The art of being Gentle: my Ross River journey
by Sue Kira, Naturopath & Clinical Nutritionist
In 2007, when I lived at Byron Bay, I decided to increase my fitness, so I embarked on daily walks to the Cape Byron Lighthouse, an 6km round trip with lots of stairs, along with going to the gym 3 times a week. I loved it and felt great.
After a few weeks I noticed that I couldn’t put pressure on my left knee in gym classes and thought I must have bruised it. Then I had a very sore thumb and suspected I’d bent it back with the weights bar. A short time later, my feet really hurt after my walks, which I put this down to trying to increase my speed too quickly – the ‘bull at a fence’ syndrome.
I thought I simply needed to slow down and let my body catch up with my brain’s enthusiasm. However, even after cutting back the exercise, the pain became worse, until I woke one morning and could hardly walk. Over the next few days the intensity of pain increased and I could hardly move my body.
I knew something was terribly wrong and considered Rheumatoid Arthritis as I didn’t feel sick or feverish and made an appointment with a doctor. When I shuffled into the doctor’s room with tears running down my cheeks from the pain, I felt like my whole body was broken. I collapsed into the chair and fell to pieces emotionally.
The doctor said my joints were swollen and he would put me on anti-inflammatories and do some blood tests. Normally I wouldn’t take drugs, but the pain was so bad I would have taken a general anaesthetic!
Everything was hard to do because of the pain. The anti-inflammatories didn’t work so I gave them up after a few days, and tried aspro, paracetamol, codeine, all to no avail. I just had to bear it. Nights were excruciating as laying still made everything throb, but to get up and move also hurt too much. I was beside myself and just wanted the pain to end. Just when I thought things couldn’t get any worse, I got a rash all over my body and started to get fevers, mostly at night. What was my body doing?
After a few days my doctor phoned and told me I had the Ross River virus. I was relieved, in fact excited. People thought that was strange (and maybe the fevers had fried my brain) but I was happy because I knew the pain would eventually go away and not be ongoing. Knowing it was a virus that would pass was comforting in a quirky kind of way. I never realised such a tiny creature, a mosquito, could cause so much pain.
Once I knew I was dealing with a virus I got stuck into Olive Leaf extract and vitamin C in mega-doses as well as herbal anti-inflammatories including fish oil. I thought I’d at least drown the virus out of my system if nothing else.
It helped, but I was still in so much pain.
After a couple of weeks, the pain settled enough so I could think more clearly, and I started to meditate by connecting to the ‘gentleness’ of my breath. My days were filled by being gentle to myself. Three weeks later I started to get more sleep at night, which was a huge relief.
Around this time, someone suggested intravenous Vitamin C. I was still in a lot of pain, and I wanted it to work, so I made a decision with my head (and not my heart) to go ahead with it and ignored my true intuition.
That night, a few hours after the intravenous Vitamin C infusion, my body felt incredibly cold and the weirdest feeling rushed over my body and into my head and I felt I was close to having a stroke. Fortunately, this passed.
But it didn’t make any difference to the levels of pain, which actually increased and persisted at high levels for another three weeks. Then the pain settled and I started to breathe gently again.
My recovery seemed slow, and I realised that whenever I tried to push myself it really hurt for ages. So I focused on being gentle. When I approached everything with gentleness I had no pain. When I had no pain for a while then tried to do something without gentleness, I paid for it with more pain.
So, what does gentleness mean? To start with, it means choosing consciously to gently breathe in and out. Gently in…gently out. It means going about the day in ‘gentleness’, whether breathing, eating, walking, cooking, working, typing, exercising and so on.
It means not rushing or getting stressed, allowing yourself to do things with ‘gentleness’, being kind to yourself, nurturing, soothing, relaxing, instead of the usual push-push attitude of hectic life. Also, don’t allow others to bug you; let things go with love.
After three months most of my symptoms had gone, apart from minimal pain, and now, many years later, I continue to be gentle (most of the time). But if I step out of gentleness, my body quickly reminds me. It’s a great a barometer of gentleness.
I wouldn’t wish Ross River on anyone, however the virus presented me with three valuable lessons:
First: the gift of gentleness that continues to be invaluable in my life.
Second: I learnt how to say ‘no’ to people’s requests and to ask for help when I needed it. Many women feel they need to be strong and do many things for others, but this only disconnects us from our ‘femaleness’.
Third: what also helped me through the experience was my decision not to ‘suffer’ or be a ‘sufferer’, but rather to ‘experience’ the condition and not own it or let it own me. I saw it as a passing energy (although I wish it had passed quickly).
Ross River (like malaria) can re-occur. From my observations and experience, this can be exacerbated by stress, when the body is run down, or the absence of gentleness.
128 thoughts on “Ross River Virus Case Study 2”
I caught ross river virus at a remote town first symptoms were knee pain I couldn’t walk for 3 days no fever yet I got a blood test the dr asked me why I wanted the test as there was no treatment anyway bloodtest confirmed, anyway 4 weeks later my knees come and go but now I have fever on and off mainly at night. Today my body is shaking all over and I have vertigo. Hope rest works I’m on osteo panadol.
It is certainly strange how Ross River Virus effects people differently. Some get the reccurent fevers yearly or whenever run down. Hope you feel better soon. Love sue
Finally I’ve found a reference to RRV and it sounds remarkably similar to my and I’m sure to everyone else’s experience. I contracted RRV in Sydney in 2020.
I’m 50 and still fairly fit. leading up to my symptoms I was still doing 20km fast bushwalk treks and doing physical work each weekend. Then I just started to feel a little sore all over my body. I’ve been a rugby player and I caompare it to being the same type of soreness as a post game body recovery. This underlying soreness progressed to major pain within two weeks.
Incredible pain radiated through both knees including back spasms. all this pain only happened when moving. If I stayed still, there was almost no pain. Night was the worst when rolling over in bed often finding myself screaming with hurt.
For me, I found ibroprofin had no effect. Non Steroid antiflamatories also had no effect. The only thing that I’ve found helpful is a good dose of prescribed codiene that just takes the ‘edge’ off.
I’m now at three months and experienced four good days without pain over the past two weeks but of course there are also bad days. One of the days recently regressed to the level of pain as it was at the very worst of early symptoms. As of today the worst hurt is my toes, feet, wrists, hands, fingers. Combine the wrists with one of my hands experiencing carpal tunnel like symptoms. This is a nasty nasty bug but as others have said, I was very pleased to get the diagnosis of RRV because it meant that I didn’t have something worse and there are many things worse.
I know time will fix this… BUT HURRY UP.
Thanks for sharing your journey with RRV Andy. Hopefully you will be feeling much better soon. All the best, love Sue
Thankyou Sue, I am forever grateful for your true story of Ross River Fever Virus..my husband found your story by googling locked knee and joint pain…it was a gift from God to read your story although I am sad that you had to suffer.My story is similar but I am 65 so a lot older.I have had all the same symptoms that you had and after a long time am slowly starting to get better with the help of an holistic doctor in Valla with all the vitamins, minerals etc etc but they only helped a little. I have had all the gut tests and did 3 months of a gut regime last year so that is pretty good. My left knee is the worst and is still extremely painful and I can’t put any pressure on it by walking and it keeps me awake all night and pains all day. I can’t bend it without extreme pain…. However your story gives me great hope for eventual healing. I can’t thank you enough for your advice you shared !! This will help SO many people…. is it on your Facebook or website so it can be found easily ?Forever grateful to you Sue.????
Thank you for your lovely comment on the Ross River Virus post. Yes it certainly is on my website, which is where you would have read the article. It’s not yet on Face Book, but maybe I will look into that too. I’m so glad it has given you hope of healing, with gentleness. Love Sue xx
Thoroughly enjoyed reading ur journey with Ross River Fever having being diagnosed and experiencing all same symptoms..
Thanks for your comment on my Ross River article. Not much fun to be suffering the effects of RRV, but do try to be gentle with yourself as you recover as this does help considerably. Let me know if you need help with managing the symptoms and help with clearing the virus from your system. I’ve come a long way with knowing how to treat this condition better these days. If just left to run its course, some can have lifelong irritating symptoms and a less than good immune system, arthralgia pains and often gut health imbalances. Love Sue
Thankyou so much Sue, was always so active,climbing mtns, really fit, pushed myself bit to much yesterday and today can hardly walk, inflammation really bad ,very painful at night ,have trouble walking when I get out of bed , can u please send me the names of the natural medicines u used..Xo
It’s sad when we are doing so well with our health and fitness only to find these things are taken away from us by a mosquito bite, but at least it’s not a permanent situation like some debilitating conditions some people find themselves in. The natural medicines that I use with clients vary from person to person depending on other things that are going on. I like to look at gut health (leaky gut and microbiome levels) as poor gut health makes it very hard for the immune system to prioritise healing of Ross River. The immune system will always prioritise the greater need. Other testing I may use is Organic Acid Testing (OAT) to see what other systems are affected, and with this information I can then best decide the most appropriate treatment strategy. If you would like a consultation to discuss these options, please feel free to book in for an online consult via the booking link. Clinic appointments are currently not available until the Coronavirus threat has passed. Love Sue
I was diagnosed with RRV in March after severe pain in my left foot which spread to most joints, debilitating fatigue and so much pressure and pain in my head I felt as if I could feel the blood flowing around my brain.
I felt as if I had nearly beaten it and then I relapsed very badly about a month ago.
my symptoms include:
– headache, pain in left eye, jaw and ears
– stiff neck and back pain
– overall weakness
– severe fatigue
– dizziness
– tremors mainly in my legs and sometimes my head will twitch
– nausea that comes and goes
– puffy eyes
– severe joint pain
– loss of appetite
– confusion, forgetfulness and bad brain fog
does anyone else seem to get tremors and brain fog? and how are people managing the virus? I currently study full time at uni and it is a struggle and a half 🙁
Hey guys!!!
I am from Australia, went to bali in 2011 with my wife i have all these issues the pain the fatigue. Being a plumber i just pushed through the pain but it got so bad in 2017 i had to stop plumbing. I went to so many doctor’s/specialist, blood test after blood test and they couldn’t work it out! Mentally it has crushed me, physically i move like a 60 year old. Im currently 26 years old. If any one can tell me who to speak to or where to go, i would be so greatful!!
Thanks James
Hi James, try a low oxalate diet to reduce the pain and also speak to a naturopath about treatment using enzyme therapy like ‘Virastop/enzyme defence’. All the best, sue x
Hi all. Was diagnosed in April 1999with RRV after many months of toing & froing. Tested for everything possible, endoscopies, colonoscopies, told that it was in my head & anarexic. Tried acupuncture(reacted severely), olive leaf, you name it tried it. Long story short, am at the moment experiencing the same old symptoms as happens this time every year. (19 yrs. but who’s counting)Swollen joints, sore throat, eyes that burn , fatigue has always been my biggest issue, but hey never ever let it beat you. Am turning 61 this year, but love Crossfit, jogging, & really keeping myself healthy with good food & lots of exercise. I definitely back off when I need to but Always, always stay positive. Good luck & stay positive everybody.
Thanks for sharing your RRV story. Yes it is true that it seems that this virus never leaves us fully, but what I have noticed is that when a flare hits (especially around winter) that a low oxalate diet seems to help reduce the pain and other symptoms heaps. All the best, love sue xx
I first noticed something was wrong when i was training for a Nepal trek in 2015. The day I started the bricks in the backpack training, I was totally amazed at how hard it was to walk up a hill, that i usually flew up. I felt so horrible. My husband laughed at me and and told me to remove the bricks. I perservered and felt really horrible afterwards for a few hours. Work was hard because I was so tired and had brain fog. I was sleeping for 10 hours which was unusual for me, who usually has to deal with insomnia. The joints started to swell soon after and were transient. Over the course of the next few weeks, nearly all my joints became swollen and painful. Then would recede. It took about two months. After reading a lot of these stories, I know now, I was blessed not to have had too bad an experiece. I did the trek in the October, but was quite slow. It is now January 2018, and in the last six months, I had had numbness and tingling in my hands and fingers. I have a neck issue, and just put it down to that. It worsened and it is now like carpal tunnel. Over the last few weeks, I have had debilitating muscle aches, tiredness and finger and wrist pain and inflammation. I think it is RRV again, as it feels just like it.
So to heal myself, I have been doing the same as some others have adviced here, ACV, turmeric, anti-inflammatory diet, olive leaf extract, zinc, Vitamin B’s, Vitamin C, lots of water, lots of rest, lots of restorative yoga and meditation. I have a daily practice of Yin Yoga that concentrates on shoulder, arms and hands. I also have delved into the metaphysical reasons for the flare up, and I believe that due to having the RRV for the past three years, I have also been dealing with low energy and brain fog. This has lead me to be seeing everything in a negative way. I have stored up a lot of anger, grief, sadness, frustration, jealousy. This flare up has given me the opportunity to explore the inner world and change what needs to change.It wil be interesting to see if this is the healing I need to clear it for good. When I first contracted RRV, I had a busy life, travelling for work and very little time to look within, maybe I needed to get it again to do the work. Good luck everyone wiht your journey.
I’m so glad I found this site! Thank you to everyone for sharing your experiences with RRV. I was diagnosed in July 2016 and had very similar dealings with my GP and subsequent specialists – nothing is wrong with you, the virus should be gone by now etc. To date I am not back to the same level of health prior to the diagnosis. The act of being gentle with yourself runs true for me as well. I have always been very active and could handle any pressure or stress that came my way. I have learnt very valuable lessons since having the virus – to ask for help and delegate when needed. My family have been very supportive however I still find it difficult not being as independent and capable as I used to be. There are times I’m aware the virus has played a part in my mental wellbeing as well and I try to stay positive by resting and listening to my body (knowing I will be able to function if I am gentle and provide some self-care). In the last 3 months I’ve started to have lower back issues, which I now need to see a physio for. I agree with finding your own healing strategy, mine was acupuncture with a course of herbs. I found a marked improvement over a 6 month period and I attend sessions monthly to ensure I’m on top of my symptoms. I also have regular massages for the muscle aches and stiffness, which I’ve found helps as well.
I wish everyone the best with finding their ‘self-care’ strategy to cope with this debilitating virus. If only the medical professionals and health departments took as much interest in the issues as we are individually, there would have been a treatment developed.
Regards Kim
I was 36 years old and my 2nd child was one year old when I noticed one of my fingers was inflamed, swollen. The swelling wouldn’t subside. Tests showed RA (Rheumatoid arthritis). Then progressively other joints started to get affected and I had much pain, dressing myself was very painful. I would ring my mother in tears not knowing what was happening to my body. I tried numerous medicines nothing worked. Finally, the rheumatologist suggested i try natural medicines and suggested NewLife Clinic, i immediately ordered their Rheumatoid Arthritis Herbal formula and start on the 3 months treatment plan, the treatment is totally incredible, i had a total decline of symptoms with this treatment, the pains, stiffness, swelling, body weakness and skin redness has subsided.
My RRF CURE!!!
Several years ago on our outback trip across Australia I was bitten by the only mosquito in the Simpson Desert, by the time we got to Dalhousie Springs my feet were like small balloons and it was like walking on broken glass!!! From this point on things went from bad to worse as you all know and by the time we got to Ayres Rock I could barely walk, chronic fatigue, sleeplessness, permanent headache, every joint of my body was in excruciating pain that was not relieved by anything except alcohol. My husband thought I had gout, as he had a mate whose symptoms seem to match mine, and we had been living it up more than a little. So I Googled the Gout Diet and tried to adjust our meals to suit and I did experience a marginal improvement.
When we got to Broome WA I thought I should go to a Doctor and get some medical advice. His opinion was that it was RRF and the blood test verified this so by the time we got to Lake Argyle I went back to eating what I normally eat, which is a healthy diet low in processed foods high in leafy green vegetables, quality proteins and abundant seafood. By the time we got to Katherine Nt to visit family I could barely move and life was a haze of pain, but every once and while out of the blue I’d have a good day where I could walk steadily and see the sights and feel a little normal. This made me wonder why and after some mental backtracking I realised that the previous day I had eaten meals that were comprised primarily of chicken, lettuce, celery, cabbage, tomatoe, garlic, cucumber.
After we left Katherine and travelled across the Savana Way I found a very good website that had a table that rated all foods on on their Purine Level. Gout is a form osteoarthritis as is RRS in its symptoms so I adopted a very strict program of the Gout Diet. Within 2 weeks I had significantly improved and 2 weeks later when I went back to work. I had recovered my former mobility, I was sleeping soundly ALL THE PAIN WAS GONE and I did not need to have any sick leave.
I maintain this diet as I have found that like anything in life you can never go back, If I eat white fish the next day I am walking on Glass Again. All the foods I used to love are gone but what I have in return is “Tomorrow” and you can never underestimate the power of that.
This is a true Testimony of My Experience
This is great news. I do hope this helps others. I am curious to know if your levels of uric acid were high via blood tests, as mine was low when first checked for RRV and other possible causes of pain. If you were ‘living it up’ as you say, then maybe you have both the RRV and gout. Interesting that alcohol helped ease the pain, when alcohol normally increases uric acid. Be good to know for others sake. Love to hear if anyone else has had a similar experience. All the best, Love Sue
Hi Everyone!
I have been diagnosed with RRv and have had what started with flu like symptoms 6 weeks ago. I was OK ish at first, but now it feels like I am developing a chest infection which I cannot shake. I have bouts where it is difficult to walk as a consequence of feeling like I haven’t got enough breath. My take on it is that a have a grumbling secondary bacterial chest infection. I have had a short course of antibiotics which initially helped, but to my mind it wasn’t long enough and I have since deteriorated in my capacity to move. I sometimes find showering, dressing, cooking etc absolutely exhausting.
I am wondering if anyone else who has experienced this has experienced these same symptoms?
My GP doesn’t want to give another course of antibiotics as apparently it can’t possibly be a possibility as I have had one lot (but I had to move house in the middle of the course and so couldn’t rest as you would expect someone normally would).
I ask because also I have up till now not had much in the way of joint pain, Ive had a bit of muscle pain and lethargy; and 6 weeks later Ive only just got the rash. I now feel this is a battle I am losing, and I just don’t see lung creaks and aches listed anywhere as Ross River Symptoms, so yeah, would really appreciate knowing if anyone has had that experience?
Thank you!
Louise
Aches and pains are definitely part of the RRV, but lung stuff, I also have not heard of, so I would be getting a second opinion on that one. maybe ask for a sputum sample and blood test to be sure to rule out infection. You don’t want to be taking antibiotics unnecessarily, but you also don’t want a lung infection to go untreated. All the best, love Sue
So good to read these stories and know that I am not alone. Diagnosed with RRV a week ago after going to the Dr with severe hand and finger pains. I also had generalised joint pain but my hand pain was keeping me awake at night. In the mornings I feel like my fingers have been broken.
I have trawled the internet for helpful hints and have commenced a grain free diet as there seems to be lots of anecdotal evidence to support this. I have also commenced Vitamin C and Magnesium supplements as well as Olive Leaf extract. Today, my fingers feel slightly better so will continue with this regime and let you know how it goes. Thanks to everyone for your stories 🙂
Such a relief to find this site! Diagnosed several weeks ago, but probably had Ross River virus for about six weeks. Initially I thought all the pain and lack of mobility was due to me not exercising enough!! and getting out of shape. I am 72 years old but always been very fit, going on treking holidays etc and having a high pain threshold! I thought I was going insane! I raced off to pilates classes to try and unlock my body, till I finally went to a Dr and was diagnosed.
Now I am being very gentle with myself. I own and run a business so still have financials and staff to deal with, but yesterday I slept all day and refused to feel guilty at all. I have sent for maroon bush tea bags which apparently are an indigenous remedy, plus taking tumeric and del immune tablets. Sending positive vibes to all you sufferers, be gentle with yourself, and show some of these stories to those around you who doubt your symptoms. The relief from reading some of these symptoms, when I actually thought I was losing the plot was such a relief. Most of the medical sites are contradictory and do not mention pins and needle (which I get in one shoulder) which caused me to think I was turning into a hyprocondriac! BE GENTLE WITH YOURSELF>
I too have recently been diagnosed with RRV and wanted to post what has helped me. Firstly when I got the results from the doctor he said my blood test showed as well as RRV I had high inflammation all over. I then asked if it was ok if I took anti-inflammatory medication ie: advil, nurofen as I was taking 2 x panadol every 4 hours. He took my blood pressure since I am on medication for high blood pressure and it was good so he gave me a prescription for high dosage Ibuprofen 400 mg to take one tablet with food twice a day morning and night. As well as continue to take panadol rapid every 4 hours. Within 15 minutes of taking the Ibuprofen my headache which I had been suffering with for 2 weeks constantly, was gone. The pains in my neck and shoulders were gone and the fogginess from my brain lifted. However, I still was getting occasional low grade fever and night sweats (which have since gotten better) and I am still feeling very tired and drained needing to lie down in the afternoon. This is my third week into RRV and I am feeling more energetic. Now I’m not sure if I got a weaker strain of the virus (if that’s possible) but I do know that the Ibuprofen combined with the panadol has made an 70% improvement and it just gets better every day. Hopefully this will help some of you …anything is worth a try. I have also been drinking beroccas and taking it easy.
Hi Sue… Good ol RRV hey… I work in underground mining so not the most “gentle” occupation.
I remember being “eaten alive” by mozzies one evening while sitting talking to my neighbour out front of our rooms. This season seems to have been quite bad too thanks to extra rain. The company has done some “fogging” around the camp but I actually feel that it’s done bugger all to help.
I felt like I was coming down with the flu… But it was the end of our swing and time to fly home so I would just dose up and get over it during the week and fly back to work.
Fly in day came and wasn’t feeling much better… But thought I’ll be right… At this point I felt like every injury I’ve ever had over my 50 year lifetime had hit me at once!! My symptoms were.. Felt like I had a popped rib and I couldn’t cough but had to… Right ankle that I rolled badly nearly 10 years ago swelled up and felt like I had rolled it again, being a butcher for many years I’ve probably got tennis elbow and carpel tunnel in my wrists… As this is what it was like…
I worked 2 12 hour shifts like this… Weds and Thurs… Fri morning 4am..i msgd my supervisor (and friend) and told him mate I’m broken… Managed to get to the dry mess to have some breakfast and see my crew… Saw my mate(with tears in my eyes).. I said I’m sorry for letting team down but (and he could see it) I can hardly move. I went to our medic and told him about symptoms… I had 5 strong pain plus tablets that night… So I wasn’t permitted near any machinery… So I was sent home that morning.
I got my wife to book a doctors appointment that day. I did my blood tests which by the tues morning I flew back up to work said I was pretty healthy… It wasn’t til the following week that they confirmed I had the rrv.
Over my 4 days off, I just chilled out and relaxed. And thankfully that’s pretty much the worst it’s been.
I am normally quite active recreationally… Train in full contact karate and yoshinkan aikido. But this slowed me up.
I soldier on thru the days but suffer bit of insomnia and now obstructive sleep apnoea.. Made worse I think by rrv.
However, I read someone else experience with the virus… And he was told by what I call “an African jungle bunny witch dr”… The guy told him to MOVE… and keep moving… To which he replied that he was in such pain that how could he move? Again he was told.. MOVE. long story short… He did… And surprising better after a short time.
So I keep moving. And I think it’s important as it keeps our blood moving and getting rid of the virus.
Obviously know your limits but I’m still pushing myself.
2 guys here in WA say that electric shock therapy did it for them… Electric fence therapy… Look the story up… And I do think there is something to it… But just can’t bring myself to intentionally grab and electric fence…
After this swing im going to my doctor for 2nd blood test. 1st one showed that the virus was dying as my antibodies were high. He said the virus actually does die almost immediately…. But the pains we are experiencing are the “hangover” period.
Most cases are short lived.. 3 months… And only rarely long term.
This whole experience made me feel like I had aged 10 years in a matter of weeks…
This past week is possibly the best I’ve been so far being able to return to some of my martial arts training etc…
Peace everyone.. Stay strong throughout…
Hi everyone,
I just received a Ross River Diagnosis yesterday. The Dr said the antibodies showed that the infection happened in the past 2-3 weeks. I remember that a couple of weeks ago we had lots of mosquitos in our bedroom and we have experienced heavy rainfall and very high humidity this summer. My symptoms started one night in bed when I felt that my left ankle was bruised and swollen. I thought maybe I had hurt it running or wearing bad shoes. Anyway I carried on and then the next day my other ankle was sore and they both felt swollen and like I’d been stung by a bee. The ankle pain continued and increased and it became harder to walk down stairs in the morning. Then my right thumb swelled and had the same pain. After that I felt like definitely something wasn’t quite right and that maybe I had had a reaction from something. I had to keep working so I took some panadol to stop the pain. It didn’t really help but I kept working for a week and putting up with the pain. By the next week, I really was in agony, I didn’t have any other symptoms but my feet were so sore and my thumb was getting weak and very swollen. We had planned to go camping, so I tried hard to mask the pain and packed up the kids and camping gear. On the way we stopped and got ibuprofen and that took away most of the pain for the weekend. By Sunday though, my kidneys were aching and I was in so much pain. I took the next day of work and went to the Dr, feeling depressed and very flat. The Dr immediately thought Ross River so took bloods and said it might take two weeks for tests to come back. I went home and googled and found this site and thought ‘gosh I hope it’s not Ross River!’ That night I had a big fever and I was so tired and flat, my mind felt very foggy and my limbs very heavy. The next day the Dr called and confirmed that it was Ross River. He said that there is no real treatment apart from anti inflammatory medication and rest. He said symptoms could last from 3-6 months. I am trying to now eat a pure macrobiotic diet and increase my intake of vitamin rich food. I have a classical homeopath who is working on my symptom picture and I’m hoping that these things ensure that my recovery is full and not too long! It’s great to read other stories and healing ideas. The ‘being gentle’ solution makes so much sense. I have been running myself ragged the past year with a heavy work load and big family to look after. Maybe this is a blessing in disguise to slow down and recalibrate!
The whole ‘gentleness’ thing, I understand. I was diagnosed with Ross River Fever two days ago. The last few weeks have been hell and I feel like I just want to give up. All the things I can usually do, I now cannot and I find myself frustrated. The pain is immense, even for one who has a high pain tolerance. For me, it started on the 2nd of Jan and felt like I had twisted my left ankle. Two doctors told me I had sprained it, but I knew I couldn’t have as I had woken up like this. I had a rash on my arms and legs which disappeared after a few days but the ankle didn’t let up for a couple of weeks.
When the pain felt like it had finally left, I was not gentle. Back into full swing with everything, and I have paid for it. Last Sunday, I bounced out of bed, ready to tackle the day but when my feet hit the floor, I collapsed in agony. The ankle pain was now both my feet- toes, ankles, the works. My wife tried to massage them, but even to touch was too painful. I have no choice but to work, and am struggling so much. As if the pain is not enough, people are laughing at how I am walking because I look like a penguin. I found out on Friday what is going on and I need it to go away. I cannot function like this anymore. People say it doesn’t last forever yet I have heard stories of it lasting 10 years. For the pain I have been feeling, 10 years IS forever.
It is not just in my feet. My elbows, fingers and knees have started too. I just want to sleep all the time, because waves of tiredness are smashing me. I know there are people in this world worse off but I am really not equipped for this. I don’t think people really understand what is happening to me. Unless, of course, it’s happened to them. No one else fully gets it. I deal with pain really well any other time, but I think the constant, unrelenting pain is driving me to insanity. I am a 32 year old male, who has to hide in the bathroom and have a cry when it gets too much. I just want it to end. I think I really need to take it easy.
So, in summary, gentleness may be the only relief. Thank you. I will try, mainly because my options are slim and I feel like absolute shit.
I hope that your symptoms have disappeared a little, I was just diagnosed yesterday-see below and it’s not nice! I’m 36 and the Dr said that being younger helps so fingers crossed
Further to my comment above, has anyone had any good results using Rose Hip Vital ?
I have been suffering from RRV since Christmas day. Prior to that I was badly bitten by mozzies in my vege garden then I noticed my legs feeling like steel rods. Then the leg cramps started and the pain in the fingers and feet.
I have recovered from psoriatic arthritis so I thought I was having a ‘flare-up’ but the pain was different, much different. Today I have horrific pain in my legs, ankles, two or three fingers, shoulders and I am constantly exhausted. I would sleep all day if something doesn’t get me up and moving.
I was taking over the counter anti inflammatories but they are sending my blood pressure through the roof.
I make liposomal enscapulated Vitamin C (which coats the vitamin C in a fat substance so as not to upset the bowel and allow large daily dosages, many ills are being cured with it) so I am now trying that. Vitamin C is highly acidic so I am concentrating on addressing that too with lemon juice, honey and bi-carb soda.
I am devastated to read of all these stories of months and years of painful symptoms but if I have good results from the liposomal enscapulated vitamin C I will let you know.
Hi. I have just got my results 2 days ago. Positive for Ross river. I too was quite relieved that it was diagnosed as I was dreading what could be wrong with me. As a very healthy 60 year old who is extremely active my life has changed. But at least I know what is wrong. My whole body aches and my left foot right knee and right wrist and fingers are extremely swollen. My neck aches continually. And am sleeping 10 hours a day but still tired. Also I find my brain is extremely scatty and vague. I am doing a full body detox next week for 21 days. Also trying to drink 3 litres of water a day. Hopefully it will help. It’s a terrible thing and I hope I will recover soon as well as others who have it.
Reading all your comments has been very helpful. In fact I am feeling grateful that my level of suffering is tolerable compared to many of your stories. I had confirmation of RRV this week after coming down with symptoms at new year. Before I even got the results back my GP advised me the best thing I could do was rest and not push myself, giving me a week off work. My work has also been very understanding and I am doing reduced hours ( luckily I don’t have too many financial pressures). I feel the early diagnosis and rest has kept my symptoms manageable. It is taking some adjustment though- normally I am a morning person and would jump out of bed full of energy, which is not he case now, afternoons are good for me! So now I will look into the alkaline dietary stuff. Wishing you all well and sending you all a big hug down the line.
Diagnosed by blood test on 14 December. Aches in the knees and wrists, but especially the ankles, left ankle is swollen. Two ibuprofen in the morning gets me through the day, initial flu-like symptoms were fairly mild. Gym visits (formerly 5+ a week) are now off the agenda. Got a medical certificate to say I find shoes uncomfortable so I can just wear thongs to work, and still managing to hobble through a 45 hour working week. Still getting into the garden now and then – though I pay for that afterwards. Time will tell, I guess. Only other medication so far is a good belt of scotch in the evenings…… my sympathies to those who have suffered for months/years, hopefully I’ll clear it out sooner.
Hi. I was diagnosed about 20 years ago. 24 hours of agony. The next day I played 9 holes of golf with no symptoms. However 6 years ago the symptoms returned with a vengeance. Off to the rheumatology specialist who ran tests and told me that Ross River fever does not flare up due to antibodies built up from first attack. HA HA. Said I had poly myalgia rheumatica (same symptoms) After 6 years of treatment he admits that he doesnt know what is wrong with me. I have severe pain and an elevated inflammation level. I now take 7mg of prednisone daily plus panadine forte as required. I have been sedentary for 6 years with a very limited capacity to do anything, including walking. I am trying to keep my head above water and not fall into depression. Jim
I have just been to WA to visit my sister on 10th December and can only think that the one bite I got at 10.30am has caused me to come down with this horrible virus.
I am still waiting for blood test results which are delayed because of holiday limitations, but reading all your comments I have no doubt that I have RRV.
Christmas/New Year/Farm harvesting/Full time job & family to care for – great timing !! – But I have decided to rest and dose up with Panadol and that is all you can do and wait it out.
I am going to the masseur to try and release the muscle spasms although that hurts in itself and also the naturopath this week and I will put up her suggestions when I get them
I cannot believe how many people are suffering with this but there is no formal treatment…..
I suppose it isn’t fatal and the research is going in to Zieka and other worse mosquito spread diseases.
I hope 2017 improves from now on.
The start of last week, I was bitten three times on my upper arms by mozzies (rural vic) & within three days those bites had turned into clear watery blisters, & I was feeling extremely tired all the time & starting to get full body aches, & had a smashing headache.
Mum told me to go to the doc to be tested for RRF, so the doc decided to test for rrf & a few other things at the same time, Yesterday ( 7days later ) all results but the RRF are back and all my other tests have come back fine, (still waiting on the RRF) the doc seems pretty sure that my RRF tests will come back positive, and so do I .
Reading through every ones stories scares me, but also gives me relief, as I was starting to think I was going a bit crazy.
Im a 37 yr old full time single mum of a 12 & 13 yr old girls & I also have a full time 40 hr a week job, which im really struggling with.
My whole body aches 24/7, Im so bloody tired all the time, my sleep is broken cause of my constant body aches, I have a thumping headache that wont go away, I have been getting really hot flushes the last 24hrs that i feel like passing out, & i just cant seem to focus on anything ( foggy head) my knees, lower back, neck & jaw joints feel like there is a knife stabbing me.
I have gone to see a Chinese Herbalist & told him about all my symptoms, so he did some Acupuncture & he has given me so ground herbs to take twice a day, but i have had no relief as of yet, i go back on Friday (2 days time ) to see what he says.
I live about 30mins from town & just the drive to town itself is draining.
Im trying really hard to stay positive, but its hard not knowing how long i will have to feel like this for, & after reading your stories im just at the start of a very long painful journey.
Thank you for listening.
Send love to you all battling this…….
I read your account of your experience with Ross River Virus with interest. Today, I went to the doctor and having blood tests tomorrow. I got 2 bites on my foot two weeks ago and after 4 days, noticed my hamstrings at the back of my knees were tender (felt like I had strained them), then the next morning a stiff thumb, then later in the day sore feet and ankles. The ankles have small tender swellings above the foot on the inner sides. A day or two later I have developed painful wrists, and lower back. Just wondering if anyone else has had the swellings on inner ankles as well. I will have to wait until next week for the result of the test, my doctor is also testing me for Lupus, but I have a feeling it is something to do with that mosquito. The doctor says she hasn’t seen any cases of RRV this season. Oh well, just have to wait and see.
Sue…..heartfelt thanks for your story. I was first diagnosed with RRV 2 yrs ago. I mirrored many of your elements of your story. I too nearly kissed the doctor when he told me I had RRV because I’d been preparing myself for the Rheumatoid arthritis verdict. I’m an dedicated horse rider and trainer. The thought of not being able to ride in the future was almost more than I could handle. The pain and aching in my hands and feet was particularly extreme. Through trial and error, I too have had to learn to ‘listen’ to my body and be ‘gentle’ and non judgemental and to stay in the moment.
I too was horrified when the medication the Dr gave me took away my pain like someone flipping a switch but came with a warning to use them only when needed as they cause serious heart damage. WTF?! The relief of pain is addictive. And that scared me. So i kept them only for the REALLY BAD days…..and I embarked on a quest of local knowledge. Turns out 90% of northern Australia has some experience of RRV and everyone had advice. I asked everyone I met and listened to them all. Then I just had to sort the wheat from the chaff and find what applied to me. I did everything ‘alternatively’ possibly, as ‘traditional’ medicine really had nothing to offer on the subject. A big turning point came in regards to blood Ph and acidity. In short, acidity enables inflammation. Want to reduce and dis-able inflammation, get your Ph under control. This was a big key for me. I went alcohol free for a year, changed the focus of my diet to aim for high alkaline foods, learnt to tolerate Bi carb soda, vinegar and green smoothies. I reduced my red meat intake to a minimum and magnesium Chloride in liquid form became my best friend. Oddly, the mega doses of Vit C make you massively acidic…making inflammation more possibly.
My chiro said to me, “Danee the hardest part of all this for you is that you cant control it. If you try & fight it, you will end up very sick indeed, for a very long time.” So I decided to be a co pilot, a navigator. I decided to be the best RRV person I could be. I too had friends looking at me strangely when I announced I was compiling a “10 reasons why I’m grateful to have RRV.” It became my mantra. I used to repeat my list and always be on the look out for new things to add to my list. It kept me positive.
The mental health side of RRV blind sided me. Wow. I had a phase when I didn’t even know who I was. It was like having an out of body experience. I remember being in a mental loop of feeling terrified and reacting accordingly. Thank the heavens it was a short phase and my friends and husband, were very relieved when I seemed to come to terms with that bit. And yes, I was thankful for the experience and include it in my top 10. It made me more understanding of folk who struggle with metal health and life long depression. A few weeks was nearly more than I could handle! I used to think mental and depression was a sign of some degree of weakness. Now I know first hand, only the STRONGEST OF THE STRONGEST, can deal with that shite! I would have jumped off a bridge to end it. It was that bad……
I’m two years in and doing okay. I have RRV “phases.” Stress, real or implied/perceived, and extreme heat seems to be my triggers. So we sold our stock feed business, I completed my studies (no more stressful written exams and practical testing) and we are transitioning from living in remote the Kimberley’s to near the coast a few hours north of Brisbane. The horses get worked when I’m up for it and thats ok. I don’t compete at the moment as I’m too competitive and just don’t need the pressure…and I’m ok with that too!
Thanks Danee for sharing your story of RRV. I’m glad to hear that the worst of it was for just a few weeks. One thing I learnt myself is that you can get damage to your cartilage from RRV so even though the vitamin C can be acidic, esepecially in the ascorbic acid form, if taken in the Calcium, magnesium or potassium form. eg calcium ascorbate, they are more buffered (more alkaline) and this along with gelatin (pure stuff with no additives from iherb) is a good combo for cartilage protection and repair. all the best, love Sue
Hi I have been diagnosed about three weeks ago as having RRV. I’ve played Aussie Rules and had broken bones and other bad injuries but this is like nothing else. Pain in my elbow, both knees and intense pain on the top of both of my feet. I can’t sleep and struggle to get out of bed. Currently I’m still working but I’m really struggling both physically and now mentally. This has really dropped me on my back. Is massaging helpful as nothing including anti inflammatory or pain killers is helping. Ang feedback would be great. Thanks Jarrad
Personally I did find massage helpful, but mostly just whilst I was having it. Love Sue
My joints causes pain and inflammation which inflammation can cause joint erosion and permanent damage. i was diagnose with RA and the pains got me crazy, joint freezes,it feels like hell but when i got an herbal remedy which i read about. I was not only relief of the pains in my joint but was totally cured because for over a year now i have not feel any pains neither has my doctor told me about RA in my system. (sorry but advertising has been removed – not allowed on this site)
As crappy as this dis-ease is, its wonderful to read all the stories that are being shared. It helps me feel sane again.
I was diagnosed back in feb 2015 after contracting the virus on the gold coast and suffering terribly through christmas time completely down and out.
I grew and learnt to understand my body and listen to it closely and change my life to be able to accommodate healing. It took 8 months to get back to a regular routine of a full time work and life balance. But I got there.
The virus showed up alot over the coming months but it eventually petered out to one episode every other monthlasting 3 days or so. By this stage it wasnt debilitating and I just had to take it easy.
Now ive got a new problem to tackle. It turns out pregnancy brings on the virus as badly, if not worse than the first infection. Debilitating tiredness, nausea and excruciating joint pain. All the rrv symptoms on top of first trimester morning sickness, fatigue and fogginess. The joint pain was the clue.
Im finally rising from the dust of a week of being incapacitated, with the help and support from a caring work team and my wonderful partner.
Stay strong people. Like sue said…being gentle is the key.
Much love
Leesa
Thanks for your reply Sue. I’ll keep following this thread. hope we all can beat this dreadful debilitating virus soon.
Well in Dec 2015 I posted on here and again now almost a year later. I’ve had three blood tests over the last year and still testing positive to RRV. The doctor has no experience with RRV so they have referred me to the infectious disease clinic at my local hospital, although I know nothing can be done I’ll just have to ride it out, but at least it explains why my health problems are still persistant, and I am hoping one day I’ll wake up and they will be gone. I did tell the doctor if I didn’t have a job to get to and kids I would not get out of bed, and she was like “hello” depression. Well after a year of chronic pain or fatigue or both in muscles, joints, recurring tendonitis, aches and pains everywhere, nausea, and more is it any wonder I feel a bit down. My feet now hurt and the tendons down the side are inflammed so getting out of bed in the morning has become so painful, my calves are so tired all the time, and my eyes are super tired I feel like my eye balls are fatigued which is weird. I have always been quite active and now have to summon up all my strength and energy to just walk short distances (which I have to walk to get to bus stops and pick kids up) but it does take mental strength and energy every day to do simple things and to get through the day. I drag my sorry butt to work every day and it really is draining me, luckily I sit down all day, but mentally its hard to focus at work, and I would rather be at home. When the kids go to bed so do I, even just to watch TV and relax my aching body, it is hard to find the energy to socialise with friends as I can’t stay up late and it is hard to do so many things that I took for granted before getting this virus. My husband isn’t very understanding so feel I am silent a lot of the time because he can’t relate to how I feel and he thinks I’m avoiding him because I go lie down early. But I physically can not stay up or standing and need to do what helps me cope and that’s go lie down, when the kids have gone to bed. But even lying down hurts after a while, its hard to get comfortable, in the mornings I ache all over and want to get up to move around, so you can’t win really the pain never goes away. I’m a cub scout leader and we do a lot of outings, like hikes, and I had pushed along on these, for the sake of the cubs, but it takes me to long to recover, after the last hike, I could barely walk for a week, everything hurt 1000 x more than usual, the pain was unbearable, I officially reached my threshold of pain tolerance. I knew I had to explain to the other leader that it physically is to much for me, I can’t do these types of outings any more, it was a relief speaking out, but also made me realise that I have to do what is right for me and my health, its hard saying no but I have no choice for my health and sanity. I’m so over it. My poor kids are worried, one is 8 and keeps thinking I’m going to die from it, so then I try not to talk about it so she doesn’t worry, but they are both helpful when they want to be around the house. On a positive note, essential oils of Juniper and Eucalyptus in some sweet almond oil rubbed into my sore aching shoulder relieved it quite a lot, after doing this for a few weeks on my shoulder I could move it so much better without as much pain, but that’s the only area it helped. But one less painful area is nice, now if only the rest were pain free. One day I’m going to wake up and think wow things don’t hurt so much… I cannot wait!
Hi Sue & everyone on this journey…
I’m in Western Australia & have been diagnosed with RRV (Feb 2016). So glad I have just found this thread and have read all your comments with such interest. There’s not much on the subject & I feel the doctors are new to this. They have managed my pain with a heap of painkillers & it’s the only way I’ve been able to get relief and lead a somewhat normal life. It seems to return with a vengeance if I catch the flu.
I’ve just had my gall bladder removed a week ago so I’m recovering from that op. & feel the RRV is causing me pain too. The joints are not too bad as I have anti inflammatories & osteo Panadol. I suffer a lot from the chills and find it difficult to sleep at night.
Thank you so much for all the vitamin & other suggestions. I’m going to try the acvinegar etc. My dr did a blood test recently and found that the RRV was still very active ( almost 7 months later).
I wonder whether the gall stones & RRV were connected in any way. Just a thought.
I’ll keep reading & following with interest.
thsnk you so much Sue. love xx
Hi Jeanne, I don’t think there is an actual connection with gall stones and RRV but if we get ANYTHING at all RRV seems to make it worse. with love, Sue
What a blessing it has been to come across this thread, I have been suffering for the 2nd time, much the same as everyone else and thinking I am going mad. The first bout in 1996 everyone told me there was nothing wrong as I kept active and did not have the classic Fatigue symptoms that everyone talked about as there was a massive outbreak in the virus in NT at this time. Asprin at this time seemed to “cure” the symptoms, though I did have aches and pains generally in my feet over the years. This second attack is so much harsher than the first, the medical merry go round is helpful, with cutting out gluten, alcohol, sugar from a big meat eater to vegetarian, but the pain persists. I really appreciated the information on this site, it gives me inspiration to be gentler on myself & try a few more natural remedies thankyou for sharing everyone
Hi guys,
I’ve had rrv, for 20 months, and after reading all of the other histories, realise, this is a weird virus. I’m lucky to have never had lethargy, (or not yet) I’ve never had fever or rash. My hubby went camping to the south coast, we live in Byron Bay, so it was a fair trip. Got there, and sort of noticed my feet really burning, but I’m also going through menopause, so thought god I’m flushing in my feet to, dam. Then I could’nt get out of the car, my feet and knees were seized up. I had to stand hanging on to the truck, till my feet sorted themselves out. When I tried to walk it felt like every little bone in both my feet were breaking. Just like that. I thought I had sat to long. I’m a swimmer and swim for and hour every day, so I’d take a Panadol osteo, and swim, then I felt okay. Google menopause it says aches and pains. Then we went to Bali, for a holiday, and it got worse every day, I got some neurofen, and that sort of helped. The weird thing is, with me all my feet and knees were making audible cracking noises when I walked, loud crackles my hubby would just look at me. I kept swimming and that really helped, I think Honestly if I had stopped I would’nt of started again, and swimming is really passive I breast stroke for an hour, as I have a bad neck.
Back in Byron I saw my Dr and said menopause was killing me, that my knees and feet were so sore. He did a blood test, and told me I had a real big dose of rrv. To take neurofen or Panadol, but that was’nt working now either. I got acupuncture, helped a little, got some herbs, then went back to a different Dr and she gave me moxicam 15, one tab a day. Amazing relief, I now take one every 4th day, when I feel the pain coming back.
My rrv, has changed though the last 3months, it has move from my knees and feet, to now my hips, loser back, elbows, and badly in my neck, and also in my jaw, no swelling no rashes just cracking bones, which other people can hear, weird
This week, I went to the dentist, as I had a toothache and the tooth was really sore and aching, he looked at it and said it looked fine, he then did X-rays, and all was fine, that tooth did’nt even have a nerve, so he said to take Panadol and hope it settles down. The aching stopped but now the other back molar is also so sore, so two sore teeth and a cracking jaw, guess what I think I have rrv in my teeth, or jaw anyway, bit hard to eat at the moment. So back on moxicam.
The virus just keeps changing, but I haven’t read anyone else having the cracking in the joints.
I refuse to be a victim,to rrv, every day walking or swimming, without pushing myself, I eat really well, have a glass of wine or two, and stay positive.
It’s great to hear from others, (oops neck just cracked) and their stories, I was told it would last 3months and you could’nt get it twice. HELLO, we all now know that is rubbish now.
Anyway, it’s lovely to feel part of a club, the RRV a club.
,lots of love and wishes for good joints
I have had myself and heard of many people who have the cracking joints from RRV, so you are not alone with this symptom Sonia. As the RRV has an effect on degrading our cartilage, it seems that this doesn’t get any better without also supporting regeneration of cartilage and connective tissue. I will be writing more on this at some stage as I have been researching the fact that continued negative effects from RRV seem to be due to the degradation of cartilage rather than the virus still being active, but both can happen as the virus can stay in the body indefinitely and as some of the pain comes from the inflammation and degradation of cartilage, then this is a key area to work with. All the best, with love, Sue
Can relate to everything in this feed! However, I don’t see it mentioned anywhere about medicinal mushrooms (Reishi, Cordyceps and Charga). I am noticing huge improvements with my energy levels and joint pain. Just thought i’d mention them incase other people want to try them too. I won’t list everything I’ve tried that I believe also are helping me recover as others have already but the top 5 would have to be Tumeric (Relieves the body aches), Omega 3 rich foods and supplements, Probiotics (kombucha Tea), Prebiotics (Sprouts are cheap and plentiful) and taking it easy are some other helpful remedies I’ve come across. I wish everyone a healthy recovery 🙂
Hi Jojo, all of the products you have mentioned can help some, but for others, nothing seems to help. it is good to try all things that might help and see how things go
I haven’t read all of this feed yet, but was very relieved after reading the first few.
I’m a hairdresser, I run my own business from home.
I ride dirt bikes and have done for over 25 years, i kayak I ride push bikes, run 5k once or twice a week and love the gym, excercise is a big part of my life!
I’m 50 and have just become a grandmother I plan to spoil my grandson with love and adventure!
One day I’m doing my usual run and I find that I can’t finish it, usually it’s my head stopping me but this day it’s my body, I had nothing in the tank I was excused!
I found I was getting out of breath just walking up from our back yard.
Then my right ankle began hurting, I thought I must have strained it but couldn’t rember when?
Then the big one! my left hand swelled up, the pain was incredible I couldn’t open or shut my fingers, my ankle my toe joint my shoulder, neck you name it, after blood tests I was told I had rheumatoid arthritis, I was devastated. I couldn’t pick up my grandson without my shoulder hurting (I was determined to hold him)
For two weeks I couldnt sleep with the pain in my hand and for the first time in my life I experienced depression, mainly at night as I knew what was going to happen.
a week later and more blood tests the rheumatoid specialist said she was not convinced it was arthritis. I was sent for an MRI on my hand which now was being treated for carple tunnel, the second lot of blood tests came back and told I have Rrf, I was very relieved but after reading some of the posts on here I’m not so sure!
It’s been 6weeks now my hand is better and I’m able to hairdress again but only half days, I’m chewing cortisone for the pain but I don’t want to be on them for long.
Every time I stop taking them my joint pain starts up, it’s really debilitating.
I hate not being able to do the things I love, I am being very carefull and gentle with my body and have not pushed myself too hard yet, I do wonder how much I can do?
I’m following a more alkaline diet at the moment and intend to go and see a natropath soon.
Knowledge Is powerful so i will keep researching and reading what I can to get rid of this virus and get back to being me.
Cindy
Hello all fellow sufferers
I was diagnosed with RR fever about 22 years ago, along with Epstein Barr and cytomegalovirus. I won’t go into details, you all know what that means. So many times during those ensuing years, I’ve been horribly sick again but never thought to be tested again for RR fever, as I thought it was a once-only thing.
Recently I’ve been really sick again and the dr tested me for many things, RR fever included. Tests came back showing both historic and current infection. There is good news but I’m not sure if this site will publish the name of the clinic on the Sunshine Coast that has a herbal remedy that works. I sure hope so, because the information could save lives. It is the Meher Clinic at Woombye. I’ve only just started on the remedy today, but my friend has been using this product for years, whenever she has a flare-up, and swears by it. They are marvellous people who will do phone consultations and send out the medication to you by express post.
I so hope this is printed and helps people.
Linda
thanks for sharing Linda. there are many products that are very helpful to people suffering RRV and I too have my list, but what I have found is that what can help some doesn’t help others and for some nothing seems to help but time, patience and gentleness, but all should be given a go first before just waiting for it to pass. with love, Sue
I am a regular at the meher clinic . I have been suffering all this year with bloods that said I had an infection not immediately current of RRV and Parvovirus human one…. I saw a rheumatologist who put me on plaquenil and I have attended the Meher clinic. Ive actually just ditched the HRT and gone back to natural hrt medication from Roz… I am keen to see her in the new year as I’m up and down with the joint aches and I too had to give up work in July : ( . I find if I do over do it the aches recommence with more severity.
As I write this I’m yet again lying down thinking will this ever end ? It’s now been 5 Years since r river first struck . The usual swelling , fever , rash & fever had it’s initial effect for 6 months , combined with a mental exhaustion .
Now 5 years on this has been a constant battle year after year . I’ve grown to accept & deal with the swollen joints & lethargy but by far the hardest is the mental effect that still haunts me 80% of the time.
Memory loss , brain fog , vertigo , dizziness severely effect my day to day life. At it’s worst I have to keep a diary as to what I’ve done during the day , did I feed the kids ? Did I send off that quote for work ?
I wish the medical field looked deeper Into the long term effects of thes virus. !
A nice story and so typical of how we can do what we need to do to make it through. I spent 3 weeks on the recliner with my hands, feet , legs and head in a comfortable position. I would be there when my family went off and did their thing and I was there when they returned. 2 endone 15mins before bed made sure I got sleep. 2 years down the track and I have learnt so much about myself because I feel, I’m the only one who can help me. My facebook group https://www.facebook.com/Ross-River-FeverVirus-Support-Group-809537645768693/ has a growing community of RRv sufferers who, like almost everyone else who gets RRV, are searching for ideas to help them understand what is happening. Thanks Sue.
Hi Sue and all
I’ve read this thread with some excitement (weird I know) but after having been diagnosed with RRV 20 years ago I thought that once I was ‘over it’ it was all done.
I’ve just started seeing a Chiropractor who confirmed for me what I had suspected all along, and couldn’t find information for all along – his simple question of ‘how are you going with the RRV’, followed by my dumbfounded expression and ‘what do you mean, that was 20 years ago’ followed up with his explanation, and his empathy (oh wow!) has given me so much relief.
I’ve seen Doctors who have told me that my symptoms have nothing to do with RRV so now you’ll understand my excitement – days of crushing and unexplained fatigue, joint aches and flu like symptoms – that feeling of things being ‘not quite right’ – a few well placed questions from him led me to doing a bit more googling and here I am.
He’s recommended co-enzyme Q10 which I’ve started taking, and I’m also looking into Tumeric as options for ongoing pain management and relief. I don’t like taking ibruprofen and panadol all the time which has been the usual go-to recommendation from medical people.
I wasn’t diagnosed for nearly a year back in 1995, and after having every test possible with no diagnosis I went into the doctors surgery one day in desperation and struck it lucky with a Dr I hadn’t seen before. He’d just diagnosed a patient with RRV and asked if I’d ever visited Geraldton (I was living in WA at the time), the answer was yes and the diagnosis was made.
So after a year of misery, pain, fatigue, depression, and having to stop work because I just couldn’t cope with working and a small child I finally had a diagnosis.
Over the last 20 years I’ve been mostly healthy but have experienced ongoing ‘Ross River Days’ which I’m sure you will all understand but no-one else does. On those days I just want to stop, lie down and take time out but haven’t allowed myself to do that, there’s always something to be done and I’ve never been a day time rester – reading Sue’s story and everyone’s comments has been enlightening and as I said at the beginning – a relief.
I’ve always thought of myself as having had RRV, I’m changing that to ‘I have RRV’ which will remind me to take time out when I need it and look after this body even more than I already do.
Thank you everyone
Hi Sue, I am in the same boat and have suffered RRV for 20yrs. I had been a very active mother and then started to feel fatigue and pain in my joints, brain fog and depression. I went from Dr. to Dr. they had done so many blood tests. I had felt I was a hypochondriac. I had got worse and the pain unreal and could not even get out of bed to get the kids to school it was a struggle. When the kids got home from school I was still in bed. I felt so guilty. But I kept pushing myself and my weight had gone up to 30kg. I had heard of RRV symptoms and went to the Dr. again and asked to do a RRV test. Yes it was it! I have a recurrence of RRV all through the 20 yrs some worse then others. The trouble is I still work and push myself all the time. I never liked pain killers but had found 1 nurofen & 1 panadol do help. I am now 56 and just wished it would all go away. Sometimes friends and family don’t understand the virus and will say to you gosh you look healthy but just can’t say I don’t feel it. This virus is silent and debilitaing.
I contracted RRV about 5 years ago. At first it was excruciating pain in my feet, hands and hips. Was so hard to walk. I had been doing a paper round on foot for a year for the excercise, but had to stop as the pain was too great. This went on for about 7 months, I never went to the Doctor as I prefer to try to let my body heal naturally. But then I became so ill I was convinced I might be going to die! The swelling on my ankles proceded to move up my legs all the way to my thighs. And my hands and arms became swollen all the way to my elbows. So swollen that i could leave huge indentations in my arms and legs if i laid on anything or pressed the skin. The pain in my joints over my entire body, especially my back, was immense, and I lost all power in my wrists. I couldn’t even lift a cup to my mouth. When i tried to pick something up it would just fall from my hand. I couldnt grip it. I also had vertigo and tinnitus both on sitting up and laying down. Just no escaping it. I lost my appetite and litterly didn’t move from the couch for weeks except to crawl to the toilet. I lost my concentration and it affected my memory which has stayed unfortunately. After two weeks of being so very Ill I slowly started to improve, so I finally went to a Doctor. My blood tests showed a previous infection of RRV. Also slight anemia and Vitamin B12 deficiancy. This is now years later and I am really struggling with ongoing intermittent symptoms like virtigo, painfull joints, memory loss , extreme fatigue, swelling of feet and hands. I do have moments where I find I am somewhat back to normal but my energy levels have never been the same. And my symptoms flare up regularly. Glucosamine with added anti inflamentry helps a bit. As do multi vitamins and vit C. I also have to check for anemia and Vitiman B12 levels. These are often low, so I have B12 injections and take iron tablets. This virus has wreaked havoc on my lifestyle. The Doctors need to realize how dibilitating this virus can be. It does not magically disappear after a few weeks unless your one of the lucky ones. My health before the virus was good. OK that’s all for now as just typing this message makes my hands and fingers ache.
I contracted ross river fever in 2003 , this went on fore many months , eventually out of the blue a elderly gentleman friend , suggested anti inflammatory drug called brufen ,a contacted my local doctor and so he prescribed it , it was quite amazing how quickly it relieved the fever and pain associated with RRV, the pain eased quite noticeable over a period of three months, The RRV had eased to were I could carry on with normal actives , how it is 2016 and the virus RRV has returned , not as severe as back in 2003 , I am back on Brufen to settle it down , I hope this information may assist suffers of RRV ,
Personally when I tried non steroidal anti-inflammatory drugs they just upset my tummy and didn’t even help the pain, so I’m glad that it has helped you get some relief.
How amazing Sue to read of your experience regarding RRF. It is wonderful to read all the views of others and an amazing help for “first timers” with this disease. Unfortunately I am not one of those and have recently found that I have it back again – last time it started in 1988/89 and at that time it was considered ” A NOTIFIABLE DISEASE” and a score was given of 8/10 to myself. I struggled with condition for many years off and on and totally agree that the sooner you realize that you cant push yourself too far, the better off you will be… Be Gentle with yourself is a wonderful Phrase- one I had never found easy to apply with 3 growing sons, Hubby, and a busy life in general. With very little knowledge to turn to and to hear from those who suggested that it was not all that bad – they were over it really quickly, simply did not help. Even once suggested that perhaps it was all in my head.. Such was the ignorance, so I am delighted for everyone who views your site that this will be a enormous help to those who are suffering from this dreadful condition… But I guess now having just been diagnosed for the 2nd time with RRF at the age of 72 and Barmah Forest also plus a dose of Glandular Fever at some point, I most certainly will be much more gentle on myself.. I was aching & hurting so much over the Xmas period it bought me to tears and I did wonder could it be Lupus, Rheumatoid Arthritis, or something more sinister as such was my state of mind. So I do agree with others who have stated the relief they felt once they could found out it was RRF, clarifying the fact they were not overstating their situation.. It is probably the worst thing I have ever experience and yes it does go on and on. Of course over the years I have had great times with no pains and life felt normal but the times I knew I had overdone things, once I was in pain again, plus a black area would appear around the eyes and I always knew it was RRF flaring up, But this time the Blood tests, my thorough GP suggested, showed it to be so.. RRF, Bah mar Forest Virus – similar I understand and also a dose of Glandular Fever at some point. Relief also that it could have been worse than this diagnosis…. So at least this time I will take more care of myself.. My husband who like me really didn’t understand what was happening all those years ago, is so understanding and a wonderful help with things I just cant manage at the moment. It seemed to just hit like a bolt of lightening.. Personally I feel it never really goes away but this time I think I had another bite or twenty to bring this on so strongly yet again.
In terms with how I have dealt with it over the years. I tried many natural remedies to no real avail for me . I do have Osteo Arthritis in my body, some from Squash days and some from this condition and again my terrific GP prescribed Osteo Panadol which I use prior to going into the garden or a walk, shopping etc, if there is just a hint of pain, I know it will be so much more if I don’t take precautions. I do feel that water is amazing being hot or cold.. relieves the joints etc but the hot water is marvellous and such a relief.. but most of all I now give in and just rest when I can, watch a movie, do a little Computer time and have finally learnt to say “I’m sorry I just cant do that right now”. Other than that I don’t have much to offer on how to relieve the pain. I did try several alternative ideas but found they were short lived.. but I did love meditation on self healing and will return to those again now.. I do enjoy a glass of wine or a super G & T and sometimes that helps to relieve it also. I think a positive mind set is wonderful but when in pain its hard not to feel sorry for yourself and is entirely understandable, but not for too long I found. I have over the years never allowed any of the above to stop us from travelling or holidaying in our caravan.. usually in warmers spots in the winter.. I find the cold is really unbearable.
But I mainly wanted to share with you Sue my experience and thank you for your site and can only hope that people like me find you site and are encouraged to hear what others have done to try and get through this dreadful virus… Like wise I can only hope that for my family, now of 4 generations will soon be able to take advantage of a inoculation very soon. Thank for the opportunity to share my story too and be inspired by yours.
Lindsey Qld. 14.1.2016
Here’s a letter that came to me via email that I felt might be helpful to others to share. not written by anyone on the list of comments on this page….
Thank you so much for your article on RRV.. i was diagnosed about 5 weeks ago.. I have had the symptoms for 3 months now. I have gone from someone that trained at the gym twice a day every day I lost 90kg and loved every part of it.. now i can barely move, I am putting weight on and every day i hate myself and my body a little more. I have tried all pain killers and medication prescribed but only helping a little… i am really struggling as to where to go to from here…how can being gentle help when it was always going hard and working hard that made me so happy and I cant now.
And my reply was….
I certainly know how you feel, but the hard mind driven push that we use to make the body the way the mind desires, may make us look good but at the detriment of the physical body and the pain and suffering it had to endure to get that way. Sure being 90kg overweight would have been hard on the body too and not a desirable way to be, but when we are sick with such a debilitating illness such as RRV we need to be taking gentle loving care of our body. If we are feeling fit energetic and healthy there is nothing wrong with doing exercise that is suitable for where we are at in our fitness and energy levels, but sickness is the body saying slow down, take care, rest.
Pain and inflammation is the body freezing an area to immobilise to give that area a rest. Sure movement is still necessary to not freeze up the area totally but gentleness is the key here. Whenever I pushed my body a little further than what it was ready for, it would rebel with more pain, so being gentle for me helped greatly. Many other people both my clients and those that have written on the blog have found this to be very helpful. The foods we chose to eat can have an impact on increasing or decreasing inflammation, so loving choices here can help too. Often if we feel tired and in pain we can chose foods that are starchy or sugary which will make us put on weight too. If the body isn’t moving much then it doesn’t need a lot of calories so this can have an effect on the body too if we continue to eat what we normally would when very active and burning lots of calories/kilojoules.
Hating the body is coming from the mind too…saying I don’t like how you look and feel but it’s not the body’s fault that this has happened but rather the mind and what it chooses to do. By being respectful to the fact that this is a time to be gentle and loving, your body will respond quicker and heal better and then you can lovingly nurture it back to good health harmony and fitness which will result in a great body too. Rebel and fight it and it will take longer to repair. If you allow some love for your body then it will lovingly respond. Sometimes we get sick for a reason…worth pondering on.
Personally I love exercising and know how much you must be missing doing what you once loved doing. One day you will be able to do that again, maybe with more gentleness if that feels right for you to do. I have found over the years beyond RRV that if I go too hard my body will let me know and so i back off. For me pain killers didn’t help either and it seemed that nothing was working for me, but when i ate an anti-inflammatory diet of no grains, sugar, gluten or dairy then the inflammation levels went down. Since then i have discovered that there are some things that do help my clients to get some relief from their pain, but it does vary from person to person depending on how it is manifesting in their body.
All the best in your healing journey
With love and gentle dedication,
Sue
My partner had Glandular, Ross River, Dendue and Barmah River virus, and ended up with ACUTE chronic fatigue. Newcastle University had a breakthrough on this so we sent blood, nasal swabs, faeces and urine tests. One of the clinics they recommended was in Cairns, luckily. He ended up taking selenium, cats claw compound, lots of vitamins, celeriac, and olive leaf extracts. Whenever he feels well and stops taking all the supplements, down in a heap he goes.
Hi l wrote back in late October and still have it. I now have this weird swelling on the lateral aspects of both wrists. ..exactly like my ankles. My liver function has been out since l’ve had RRV. My GP keeps wanting me to have all these tests and ultrasounds as he can’t believe it’s RRV. Reckons I might have a fatty liver and recommends l get a PERSONAL TRAINER. l had to share this as l know you’ll understand the exhaustive fatigue and the idea of a personal trainer! He is kind and wants to help me. At least Ross River stayed away for Christmas. ..though is back to bite me today.
I have RRV as well since the beginning of October with blood test to confirm a month later when I finally dragged my sorry aching tired body to the doctor. It started with inflammed wrists, shoulder pain, and my neck was so sore it was awful I could barely move, my usual 5am get up and do yoga had gone, I could barely get out of bed at 6am to get ready for work and get kids to school everything just became so difficult and I didn’t know why, my husband was like “what is wrong with you” I said I don’t know I am just “exhausted to my bones” and then that weekend I got a call from the doctor as it had been two weeks since the tests and I had been to busy to get the results and they are like come in today. I was relieve there was an answer to my health problems but didn’t really know much about the virus. I still am exhausted albeit not as exhausted as I was in October, but I was a fast walker previously zipping around the city and stuff and walking to bus stops but now I can barely walk faster than what I imagine a 100year old might walk, and I drive to the bus stop and I just don’t have the body energy to do my usual walking thank god I lost my fit bit I would never get my 10K steps now. The aches and pains are recurring but I do think they are better than they were. The tiredness OMG you can’t explain it to anyone, its debilitating. I had a week of work and I had a random Ross River Rest Day last week as my boss can see I’m struggling. My brain feels foggy and I just can’t focus on work, life, kids, in my usual way it feels slow and foggy. I am resting when I can (not much) but on the weekends and at home I sit down more than I used too or lay in bed more than I did. I hate telling my kids I have no energy to take them to the park and hate that I don’t have my usual energy and I haven’t been to gym for 2 months either, but I did finally get there this Sunday morning I need to do some gentle exercise or I will go crazy. Hoping that by 2016 in the new year I feel better and life will get back to normal. I am taking Milk Thistle for the inflammation and zinc tabs but other than that not much else.
I contracted RRV in Thailand September 2014, I never had any joint pain or rash just unbelievably tired. I have been up and down for the last year. I started exercising at the gym about 6 weeks ago and I think it has set me back quite a bit. I’m now exhausted again and going to the gym 2 or 3 times a week seems to zap every ounce of energy I have. My doctor is adamant RRV only lasts for a month!! I’m trying to find as much information as I can online but unfortunately there’s not a lot out there and extra vitamins seems to be the only help there is. I’m from Ireland and am currently living in W.A. I had never heard of RRV until I last year! It’s great to read all the comments here and see what has helped other people.
Hi. ..l am so glad to have found this group. I was diagnosed a month ago though my blood tests showed l had previous exposure. I also had influenza A AND B at the same time. ..yay a trifecta! I have been extremely nauseated and have lost my appetite for real food. I mainly snack on nuts and dried fruits (and Aldi chocolate).l am taking homeopathic remedy as well as olive leaf extract. This week has been pretty bad. I started back at work and both my ankles are so swollen and painful so now I take panadeine forte. My fingers are also swollen and am tired/ headaches. I have to work as l am a casual employee and l don’t think it’s easy to get a sickness benefit. Hopefully soon l’ll be better as l’m starting to get a bit depressed. Other people’s lives keep going l feel like mine has just stopped for a bit.II’m staying positive though. So so good to talk to you. ..take care of yourselves x
Just to let everyone know you can catch rrv twice i caught it the first time dec 14 and was shown with a blood test that was active and i will admit was very painful and put it down to gout but changed my mind once pain went from my knees to ankles to both feet so Google was my friend it lasted approx a month after which i had a follow up blood test which shown was inactive in my system then about 3 weeks ago i started to have swollen ankles and sore joints didn’t really pay to much attention but thought I would get it checked out with another blood test well i only just got the results bsck and is showing active for rrv again he said i have definitely caught it twice and he has only seen 3 other cases the same i will admit its not as painful as the first time but is frustrating especially knowing if i have caught it twice whats stopping from getting it 3 times plus i live in darwin so mozzies are rampant
Hi Adam, yes you can catch RRV several times, as it can be a slightly different strain of the virus, just like any virus, it can mutate. I have a friend who lives in the bush who has caught it seven times so far. very sad indeed.
Somehow it is comforting to know there are other people feeling the same way, although I would not wish this upon anyone! I have had the virus for 9 months now. It is ruining my life.
In the beginning I woke up with a rash all over my body and severe pain. I couldn’t even lift up a fork to eat or shower myself. . I have never experienced pain like that before.
I have had my own business for 13 years but now struggling to keep it open as I am hardly there anymore . I have to pay staff to constantly to cover for me. Also a huge part of the business is my trade and the work I do is very specialised so I cannot find alone to cover for me. My hands won’t work poperley and the pain is sending me crazy. I have worked so hard for my business now I feel I have to give it all up because of one mozzie. The pain will not go away. Although it is no where near as severe as in the beginning, it is the constant pain that is driving me crazy. There are still days I cannot open a water bottle. I am an musical instrument repairer as well as a musician. Actually , I feel like I should be saying I WAS a musical instrument repairer and musician. My hands just won’t work anymore.
I feel like I have that ‘dead arm’ feeling constantly in my whole body. I have put on so much weight and I am not a very nice person to be around at the moment as I am so fatigued. My kids are suffering because of this too.
I have spent a fortune on trying to ‘fix’ myself .
I have tried- several doctors, Rheumatologist, acupuncture weekly, kinesiology, reflexology, massage, vitamin c infusions, magnesium infusions, detox diets, turmeric, fish oil, gluten free diet (this helps) , Chinese wormwood, murhr, and many many other supplements and vitamins, anti inflamitories, steroids and pain killers. And after all of that and thousands of dollars, still don’t think there is a fix it !
At this point I feel like it is never going to end, I feel like it is sending me crazy.
My family and friends don’t understand , apparently I look ‘fine.” The things I love doing I can no longer do,
Keep thinking I will be back to normal soon, but I don’t know how much longer I can wait.
I have had RRF for 8 months now and are pleased to read that others have had it for that length of time or longer. I know that sounds horrible but as you all know, you think you are never going to be back to your usual self. I was told RRF would last a few month but it is not gong away. I thought I was suffering from chronic fatigue last month but blood tests came back that RRF was still active in my body. I was very unwell in the beginning, not being able to lift my head of the pillow or get out of bed with fever but after going to hospital, blood test showed I had RRF. I have pain in my hands, feet, right elbow and now my right ankle is swollen and extremely painful. It feels like I have a bad sprain. I can hardly walk or drive my car unless I take pain killers and strap my ankle tightly. I drag myself out of bed each day and have no energy or motivation. I am self employed so my workload has decreased to one day a week. I find when I do something or go out, I spend the next day in bed as I am exhausted. It is a very depressing illness as I feel so useless but it is good to know it will eventually go. I have gained 7 kilo from not walking and moving. My Doctors has suggested 4 lots Vit C drips but I am thinking of buying the powder. I wish you all luck and good health.
Hi all
I would like to wish everyone good health very soon. Thank you for all your info & suggestions, my story sounds pretty much the same as everyone else, I seem to have the lot….the pain, no energy etc etc I feel I cant cope much longer, the relentless pain, broken sleep just seems to go on and on. I had months off work, my boss has been perfect, he started me back on very shortened hours and slowly increased my hours, but I couldn’t cope, now I’m working very much less hours, can’t go for my walks/swim, cant really play with my gchildren, my garden is a mess etc etc. When will it end??? the me pre RRV has gone and I want her back, I have gone to doctors, naturopaths, acupuncturist, I’m a meditator & really followed all directions to a tee, but the RRV rollercoaster is driving nuts. I’m not usually a negative person, but I’m really getting tired of this. Is there anyone out there that can help. I feel for you all, I’m lucky because I have a wonderful family that love me to pieces, and yes I’m not in a wheel chair (although earlier I was) but I do have my arms and legs, so I do have a lot to be thankful for. Best wishes to all.
Hi Deb,
I can honestly say, I know how you feel and it’s really not nice to experience. I used to say, I wouldn’t wish this on anyone, not even someone really evil. I have found some helpful treatments regimes that work quite well for my clients with RRV and have successfully cleared that last remaining remnants of my own virus from my system this same way. I can offer Skype, phone or clinic sessions depending on where you live to talk about this. I don’t like to publish this info as it needs strict guidance and I wouldn’t like people to self medicate this way…too tricky.
with love, Sue Kira
Contracted RRV 23 years ago in Queensland. It was a long time before a proper diagnosis; many Drs. didn’t know. Many claimed I was neurotic; may have been, but it was because I was sick not the other way round. The pain and debility caused an end to my career, often ended friendships, my working life cut short; when I could work, had to try to qualify for pension the symptoms would lay me flat again. Have learned to live with it through wholistic medicine and some fantastic naturopaths, acapuncturists, osteopaths, Qigong and me taking control of my health. Stress and pushing myself always brings on a new attack. I find diet, rest, meditation and a marvellous group of friends, family and Qigong teachers who have given back to me some semblance of what can be termed a normal life. I thank and bless them all. Having read all the letters I find myself nodding my head in agreement but the best thing is when I have a normal day I know I am alive. Unfortunately have active Epstein Barr Virus as well. Amazing how our bodies can respond to the worst of situations or events. Good luck to us all and to those who may be working to find a cure.
What a great forum … it is obvious reading this that the doctors have a lot to learn about RRV! I contracted it between Xmas and New Year 2014. I remember telling my husband for about a week that I really ached all over and felt like I had a virus. I broke out in a dotty rash and thought it was something that would pass , I’m not one to run to the Dr. if it is nothing serious. However , after several nights of restless sleep , my husband found me in the morning on the lounge asleep. I told him I got up for some Panadol as I felt rotten , but whatever it was I had , I felt it had gone. He walked past me and squeezed my foot , to which I screamed in pain and broke into tears …. it had begun. I was totally bed ridden for several weeks , the pain and tiredness was horrendous. Now, 9 months later I am still not 100% . My feet and fingers hurt , i have trouble getting up and down from the floor and general movement is limited. I was wondering if anyone has had skin nerve pain? I have recently developed an incredibly sensitive line from my elbow towards my underarm , sometimes it burns or feels prickly , but always sensitive. I asked my Dr but he had nothing …. so does that make it a non-existant pain?LOL When I mentioned that I had RRV to him ( he was a new Dr) he dismissed it by saying that it would be gone by now anyway! I wish!! I will give the anti-inflammatory diet a go … has anyone got any ideas how to improve energy levels? I am so tired all the time and getting really down with my lack of energy and constant pain. Also , has Olive Leaf worked for you ? I am 52 and live on the South Coast of NSW … thanks for your contributions. Its comforting to know there are people that understand what you’re going through
Hello sally “52” or now more… How are you with the RRV?
I am 65 1/2, with RRV. Originally form the Sth Coast, now in Sydney. But my RRV was given to me by a mozzie (I suppose) in Maleny Qld (Hinterland of the Sunshine Coast) before Easter 2016, 22 months ago. This RRV is too loyal to me, never left me. I have all the symptoms mentioned by you and the others, except for nausea. The never-going-away variable chronic or sudden muscle and joint pains and paraesthesiae (pins and needles, tingling, itchiness, feeling “cuts”, skin sensitivities), the feeling of fever (not hot flushes) especially at night or just suddenly with or without sweating, transient fast heart beat at night… I feel like my own guniea pig, studying myself, as I am a GP. How strange. The GPs I saw in Qld and NSW dismissed all the misery: it is only for a few weeks and you won’t die from it. Take Panadol and anti-inflammatories…” A past colleague said he had it, but it was gone in a few weeks. – Mine is not leaving me. Every month, when I feel some improvement, I believe, now it will go away. But, it became like a “pet”, loyally returning to me. I cannot tell what helps, but immune booster vitamins, minerals and herbs do help somewhat, even if they do not cure me. I am trying to get permission from the TGA to get PPS (pentosan polysulfate sodium, can be a curative anti-inflammatory medication, on the world market for 50 years…). In Australia, recently Dr Lara Herrero from Grifiths University has done clinical studies and wrote articles on PPS in RRV. It does work for osteoarthritis, as well, in humans and in animals, reducing cartilage damage, too. I hope, I and other RRV sufferers get acess to it. – Never give up hope …
Hi everyone,
So glad to have found this site and the information.
I was diagnosed with RRV in Feb this year and have been battling the symptoms off and on since.
I went to the doctor after two weeks of terrible pain in my limbs. I was at the peak of fitness and leading a very active lifestyle and extremely healthy. Within no time at all I was just totally crippled and it changed my lifestyle completely.
Just recently I became very ill again after thinking my symptoms had gone away. I own a busy restaurant and have found the chance to rest when I need to is almost impossible. I found myself battling through the symptoms while they got progressively worse until I woke up one day with back pain so bad that I was short of breath when I moved. Scared the hell out of me and it forced me to take a much needed few days off… That is two weeks ago and I am still feeling extremely fatigued. I forced myself to go back to the doctor and was basically told that I could expect more of the same in the future if I didn’t slow down.
The sad part with RRV is that you really do start feeling depressed when you can’t operate at full capacity that you once did. I am struggling with just simple tasks each day that I use to take such joy in doing. My family and colleagues think I am in a bad mood… but I am generally in the best possible mood you can be when your body aches like its been hit by a bus. I am trying really hard to get my husband to understand how hard it has been for me, but he treats it like my excuse for EVERYTHING. Our relationship has suffered so much that I am at a point where I feel like I just want to run away. I would be very interested to hear from others who have had similar experiences with family and how they dealt with it.
I was diagnosed with Ross River about three months ago.
I had broken and dislocated my toe early in the year and thought that was causing all the pain I was experiencing in both legs. After the toe had healed I was still left with all the pain in my legs and have long forgotten what normal ankles look like. They are now called kankles. So I went to the doctors and had numerous tests, the doctors were thinking tumor in the pelvis region, and had numerous CT scans, x ray’s, dopplers of the legs. After a CT of pelvis with contrast I was left with an all over body rash (looked like a cooked lobster) which I had put down to a reaction of the contrast that lasted 10 days. The girls in the xray clinic have told me that its not possible to be a reaction of the contrast because it is only in your system for a very short period.
Doctor had ordered blood tests that were delayed due to rash but finally when done, showed history of Ross River (had it 30 years ago) and current Ross River. I was overwhelmed by the results as I had been thinking tumor for weeks, had started putting my “affairs” in order.
I have been reading symptoms of Ross River ever since and mine do not quite match anything else I have read. It’s not so much in my joints but more so in my calf muscles. I do not have flexion any more in my legs and can not do simple little things like squat, walk up steep inclines, stand on tippy toes, where any foot wear with a heel. My muscles are very hard to the touch in my legs and swollen. It has made the cellulite in the tops of my legs very significant and soles of my feet are burning. I have started to develop subcutaneous lumps in my forearms. Not sure if that is associated with Ross River but I certainly would be interested to know if anybody else is experiencing these symptoms. I feel like I am going nutso.
I’m also going to try the IV Vit C, combined with IV magnesium and IV Vit B. I work with a nurse (I’m also a nurse) that worked with a doctor that used this combination with good results 20 years ago.
Hi how did the Vit C go? I’m thinking of trying it as my feet and hands are in terrible pain thank you
Amanda
I got Ross River Fever in 2013 and it was the best thing that ever happened to me. I feel as if that little mosquito was an incredible gift who chose me so that I could wake up. What a journey that little guy offered me. I was also lucky enough to have an immune killing parasite at the same time which nearly killed me, I don’t know which one came first, the parasite or the mosquito. Why do I feel lucky you may wonder? I feel lucky as there are not many people who get a wake up call at 35 years old and are able to completely recover and realise that the life they were leading was not a healthy one. Sickness and illness manifests in us as we are evolving so rapidly our bodies need us to slow down, rest and integrate. I learnt how to stop, slow down, hear my bodies pleas for quiet, calm, good nutrition, plenty of sun, lots of sleep. If you are suffering from Ross River know that your body just wants rest, surrender to time on the couch, days lazing at the beach as this is what your soul is yearning for. You will recover, the virus will run its course and you may look back with gratitude for the lessons learned if you keep and open mind and an open heart. Remember that your journey is your journey and cannot be compared to another persons journey, you will recover in the time your soul needs to rest and integrate, for some that may be two weeks, for others two months.
Thank you Belle for your beautiful sharing. Yes I totally agree with everything you have said about allowing the body to heal in it’s own time and that it is a journey that brings us back to feeling how to look after ourselves better and feel what is needed at any given time. The parasite would have also come from the same mosquito no doubt as this is just what happens to those that get Lyme’s disease too, they get many parasitic infections with it. The resting needed by some can be years, but that happens especially if they don’t rest and let the body heal and clear itself. Thanks again Bella, you are truly beauty-full. with love, Sue
I am of the opinion that RRV is under-reported in some areas of Australia – and sometimes local doctors are not testing for it intentionally.
We live in a region south of Perth in Western Australia. The area we live in is heavily treed, backs onto a river and is bordered by salt marsh. Originally we bought land here because it was cheap and we couldn’t afford to buy closer to the coast (where the mozzies aren’t as bad.) We’ve lived here for 20 years – some years the mozzies are so bad that I can’t even peg out the washing and the kids can’t jump on the trampoline outside even when smothered in Bushmans 80%DEET. The local mozzie management group aerial spray for mozzies sometimes but we dread it when the chopper comes over, because the mozzies are always a lot worse for the next 3-4 days after the aerial treatment. It’s almost like the chopper scares them out of their hiding places and into the cleared areas where humans live. We’re also concerned about the chemicals used in the aerial treatment because we aren’t connected to scheme water and rely on a farm dam supply for drinking water. A few years ago we asked the council for the material safety data sheet on the chemicals they were using for aerial spray and the data sheet warned that the chemical was dangerous to aqueous life (so its impact on our drinking water supply is questionable).
About 7 years ago the mozzies were particularly bad for more than six months 24/7 and that year our whole family came down with Ross River Virus symptoms – although none of us were officially diagnosed with RRV. My symptoms were the worst – perhaps because mothers are the least likely to get the rest they nee when the whole family’s ill. It began with a fever and chills for about 4 days and burning aching joints – I dismissed it initially as a bad flu. Except the aches didn’t go away after my temperature returned to normal. For about eighteen months I had tingling arms and legs. My joints all ached – especially at night – and my lymph nodes were swollen. My wrists were especially weak – I recall bursting into tears one day out of sheer frustration because I couldn’t even undo a padlock on a trailer.
I rarely go to the doctor but eventually I went to see one because of my exhaustion and ongoing aches – the doctor suggested I was just getting old and needed to slow down. She prescribed 6 osteo Panadol a day for the symptoms but it had no noticeable impact on the pain. A few weeks later I saw a second local doctor – who suggested my tingling limbs might be due to a fall I had had, six years previously. He told me to take 6 Ibroprofen a day which just made my eyes and feet swell up and my skin itchy but did little for the pain. Neither doctor suggested a blood test for RRV – even though they both knew I lived in a high risk RRV area and they could work out from my medical record that I’m not a hypochondriac (the last time I’d been to the doctor was to have a baby 12 years previously). Around the same time, my teenage daughter went to a different doctor with almost identical symptoms to me – this doctor told her she might have juvenile arthritis and suggested Iboprofen – but again she wasn’t offered a blood test for RRV.
Finally a doctor agreed to do a blood test to get to the bottom of my symptoms – the results came back saying I had chronic anemia and broken blood cells. I showed a friend (a nurse) the original paperwork and test results and she said that the doctor hadn’t even requested a blood test for RRV! (even though I’d asked him to test for RRV). She added that anemia and my exhaustion were typical symptoms of RRV. She went on to say that my experience of not being tested for RRV wasn’t an isolated incident – that she knew of other locals who’d been told they might have everything from rheumatism to lupus – but not RRV (!).
Realizing I was not going to get much help from the local doctors anyway, I went on a gluten free diet for a few months in an attempt to reduce the inflammation and I started taking liquid iron supplements to attempt to improve my anemia. The dietary adjustments undoubtedly helped my general health. But nothing seemed to help with the tinging fingers and toes – and I was still sleeping with my wrists elevated – hubby had rigged a stirrup which dangled from the ceiling as I found keeping my wrists elevated at night helped with the pain.
For me, my recovery from the tingling in my arms and feet associated with Ross River virus was almost as sudden as its onset – and I can only share how it happened for me. I recall praying one night – something along the lines of “Holy Spirit, I’ve run out of ideas – my body’s a mess – please fix it.” And then about a three days later I woke up in the middle of the night with this strangest sense that something was different. I was lying there in the dark and I suddenly realized my hands and feet weren’t tingling anymore for the first time in ages. My neck and back also felt almost back to normal – after 18 long pain-riddled months.
Everyone’s body is subject to entropy. RRV can place a heavy additional toll on your body – dietary adjustments are usually needed to restore your health and sometimes the battle for health affects your spirit (i.e. your mind, emotions and will) and you need to draw on your soul to become whole again.
I hope this helps anyone who is struggling with long term RRV or similar symptoms.
Hi there. I was diagnosed with rrv about two months ago. I’m 32 and a single mum with a 2 yr old daughter, at first I thought I had reumatoid arthritis as I was physically in so much pain at night and in the morning. My pain would always change areas, I thought around 6 months ago that I had carpal tunnel as the doc diagnosed me with that I had all of the symptoms of carpal tunnel ( pins and needles in both arms both day and night and unable to do simple things like open a bottle of milk) then only a few days later I was diagnose with tennis elbow in both arms and rotater cuff problems, the pain spread down to my hips knees and ankles and just going for a walk or walking upstairs to my apartment would cause me to tear my calf muscles. I live in melbourne and it took two doctors to finally figure out what was wrong after many blood tests. Apparently it is not common at all around here. I have nausea almost every day but there are days, not many where I feel great but that only lasts 24 hours until my symptoms come back again. I believe I have had rrv for over 6 months and it is to say the least awful. I have started to get really itchy arms and I’m freaking out that it might be the rash 🙁 I have been reading these threads and I’ve never joined a group online before until today. Thank you for writing your stories and making me feel a bit more normal. I found the discussions about dietary changes very interesting and will try this out. Jessica
Hi Jessica,
don’t fear the rash, it’s no big deal and settles quickly. I had it for one day then gone. Love Sue
Thank you Sue, your comments about being gentle with yourself were so helpful when I caught this virus from hell.
We do push ourselves to do our best but are not always able.
My symptoms started with tiredness and then feeling my legs were heavy, about 7 days later very serious vomiting and almost immediately being unable to move my legs. I was carried into ambulance and given fluids and oxygen.
My B.P was 90/52. A blood test showed a serious viral infection. My head felt like It was in a vice. My body pain extended to the soles of my feet. My G.P. took one look at my swollen wrists and said it was Ross River Fever. Blood test confirmed this. I was so happy to now have a name for this horrible virus. Bronchitis developed within 3 weeks
My optic nerve was damaged from the low B.P. and my energy levels were very low until recently which has been
3 months now. I am relieved to be retired as working would of been impossible.
Having Ross River Fever has effected so many people may we hope for a vaccination soon.
Wishing speedy recoveries to all.
Ps. Ticks can also transfer R.R.F to humans.
All biting insects can carry the RRV as well as things like Lymes disease and Borellia and the likes. Awful.
I have had RRV for 10 months with numerous debilitating relapses as bad as the very first. I had to give up work several months ago. Some days I can hardly walk, use my arms, move my head…when it gets in my jaw my bite goes out and I can’t open my mouth or eat. I have had times when I have felt ok & thought I was over it then BANG! It hits me again. I cannot sleep for the pain. My joints still swell a little. It moves around my body from one day to the next. Sometimes I can’t drive. I live on Tamborine Mountain & had never heard of this virus or I would have been more careful. People’s awareness needs to be raised. Official websites say you should be over it by 6 months & everyone recovers fully, reading what people actually go through, this doesn’t seem to be the case. I read there is a vaccine but it has been deemed uneconomical & unviable! This virus is destroying people’s lives! There was an epidemic on the Gold Coast this year. I’ve tried sooo many natural things, currently just started turmeric & olive leaf & glucosamine. Am researching serrapeptase. Would welcome other suggestions. It is scary & my thoughts are with you all for full recovery.
By the way, just wondering….has anyone else developed tinnitus as a result of getting RRV? Mine came on during a very painful patch about 4 months in, and hasn’t stopped. Thank you.
Hi Angela. How is the Rvv now? I am in Brisbane and I have had it for 9 months now. I feel like it is ruining my life. I hope you are getting some relief
Yes! I’ve had tinnitus for about a month or so; I was diagnosed in March this year. The tinnitus is driving me to distraction – my head is constantly tired and overloaded which is adding to the joint and muscle aches and lethargy.
I’m trying some natural alternative therapies. Epsom Salt baths help a little; I’ve been reading about the qualities of Magnesium Oil so will use that in conjunction with the aromatherapy. I’m continuing to seek something that will give relief.
I have tinnitus, came on after getting Ross River and I didn’t relate it at first. Some days, especially mornings it’s so loud I have to turn music on as a distraction. Chronic fatigue days are my other big problem now. Just can’t do as much as I used to. It’s been so long I have to remind myself that this is still rr.
I know someone who got rr and recovered in 6 weeks, so I wondered what I did wrong. I had swollen ankles for 18 months and could hardly walk for 6 months. Grated turmeric every day helped more than anti inflammatories. 4 months after getting rr i bent over and tore a ligament off of my spine and got a bulging disk all in lower back. I think this happened because i couldnt use my ankles and bent with my back too much. 3 years now and some days are good but if I do too much I get exhausted. I miss my energy! Thanks to everyone for comments, I now know lots of rr sufferers have years of symptoms.
I got Ross River in Berri, South Australia in Dec, 2016 at a rowing comp. I had to tell the dr what to test for as they were at a loss. My nurse friend loaned me her text books and i found it.
Hi Angela
I was diagnosed with RRV in Jan (2016) after about 6 months of feeling rather tired and sore on and off since July 2015. I only went to the doctor after I found myself sitting on the grass in my backyard with no strength to play with my dog. I found your post interesting as I live in NSW but undertook an audit on the outskirts of Brisbane late June 2015 in an industrial area, this is where I believe I picked up the virus.
I’ve since done some research and you are right, there was an outbreak just before I visited. Wish the government had told me so I could have protected myself.
Most of the time I’m fine, just every now and again I have a few days where I’m very tired and have to take extra sleeps when I can. I also run temps at night every now and again, frequent chest pains and a newish one is I have numb toes.
But all very mild compared to all the stories I’ve heard, just rather annoying how long it’s been carrying on for.
I have noticed that when I take berocca regularly I feel rather good.
Kylie
Yes I’m finally over Ross River Fever, it only took 19 odd months. How do I know I’m finally over it, I’ve managed to catch a few minor bugs going around that would normally floor me but instead haven’t seen any sign of RRF at all. I’ve never been so happy to catch a bug before, bugs have nothing on RRF.
I seemed to have a few rather bad months towards the end of 2016 and then magically nothing. A blood test was done which the Doctor found confusing as it was apparently still showing results that were only an indication of RRF. So apparently it could have been RRF or something else??????.
As long as it’s gone.
I’ve even been able to renovate my front and back yard all by myself.
Good to be back
Hi Kylie,
What do you feel helped you get to that point. do you feel you may have some good habits that helped this, if so what were they?
Is there a food or two you naturally eat a lot of etc?
Kind regards,
Oliver
I heard of a couple of farmers who hung onto an electric fence to reorganise their “electrons” and had a cure. I tried it out. The fence seemed to be fairly low voltage but it did feel beneficial….
That’s great, I have heard that too but not been game enough to do it. Thanks for sharing.
I have just been diagnosed with RRV (and have some parasites as well). I have not got it as bad as some of you. I am sleeping 10 hrs a night and feel tired some days especially if I overdo it. Several of my joints are painful, especially in the morning. There have been days where I could not walk first thing in the morning. I am not working atm and was hoping to get back into it in about a month. Will have to see how that goes.
7 1/2 years on from RRV and still not fully well. The pain was a problem the first few years, but the fatigue is my on going battle. When I first got sick I was in bed for a month! I believe I was hit so hard with it because I had no reserves. I had been studying for 8 years, working & two busy kids. Long term stress from having too much on left me vulnerable I think. However, you are all stating the best advice – vit c, olive leaf, lowering acidity, etc. Eating well is paramount, as is rest. Avoid alcohol folks, or at least minimise. One of my best self healing actions was to eat only raw food, nuts and lots of fresh fruit & veggie juices for a few weeks – it helped a lot. Now I am 2 steps forward 1 step back when trying to reclaim energy & fitness… So patience, being gentle and listening to my body are my goals! RRV really affected my happiness as I couldn’t participate in life so much, but I certainly learned to say ‘no’. Good luck everyone. There has been an increase in RRV over the last summer, including my poor mum – but sharing blogs like these are a great resource and contain the best advice.
Hi there I got diagnosed with Ross river virus two weeks ago, after waking up during the night hot like I was sitting on a furnace and them felt cold, had bad dreams, I got up in the morning and struggled to have a shower and after it felt so nauseous I was gagging but didn’t vomit, I put myself to bed then the headaches started and they were bad, behind my eyes and the high temperatures. By day four I went into ED and had bloods done lumbar puncture to check to see I didn’t have something worse, my bloods came back saying I was low very low in potassium so the dr decided to keep me overnight, I was hooked up to IV and given potassium and something else which I cannot remember as I could not think straight and I felt like I was going mad!!! I had no appetite and still was nauseous!!!! An infectious diseases’s dr came to see me and asked me a lot of questions, have I been on holidays? no! Camping? No, I had a couple of mosquito bites then I told him about my rash, but it was like sunburn covered my while lower chest stomach area. He did this thing where he placed his hands on my stomach and thighs and if left white handprints, dr was still convinced it was Ross River virus. After 4 days in hospital I had to wait over a week to see that dr again and yes confirmed RRV said I just recently contracted it told me it would nearly be out of my system??? How is that so when I’m still having pain in my joints, nausea and fatigue I have tried to drive but ended up turning around and comming home. I called pathology and spoke to a person there that told me that I should be having a rebleed after two weeks. She could not tell me how long it would be in my system so how can this so called proffesor of infectious disease know? Surely both have been dealing with a lot if cases. Still getting mild headaches, pain, nausea etc. it comes in waves. Can someone shed some light for me please.
Hi Ange,
Your symptoms are similar to mine, although i dont have a load of pain..
I wanted to ask you how are you doing now?
I rarely speak to people who had the headaches, extreme nausea,fatigue and brain fog… Most people are just so sore and fatigued.
It weird.. hopeefully you see this post and i get a reply.
Thankyou so much.
all the best
Amy
Hi Amy, I saw your message and thought I’d reply, I’ve had RRV for about 12months now and am still getting bad symptoms from the virus. Lots of brain fog, inability to concentrate, fatigue and nausea are my main symptoms. Are you getting these symptoms also? I don’t seem to have the joint pain like most people, all my symptoms seem to be all up in my head. I’ve also started getting pain in my right arm pit. Back off to the Drs next week for more tests but I suspect it’s the RRV flaring up. I do have my good and bad days but lately it feels like more bad than good. I think the heat and stress seems to flare up the symptoms. Would love to know how you’re going!
Try Vit C in high doses throughout the day as it passes out of your system quickly (I use calcium ascorbate powder). + magnesium powder + vital greens powder (to counteract acidity in the body which increases inflammation) + freshly squeezed lemon + organic ginger + organic turmeric (you can grow ginger & turmeric in pots & just cut bits off the base when you need it) or you can freeze it & grate it frozen into teas to steep or add to meals + manuka honey min 8+ strength; + Apple cider vinegar (from health store so it has the ‘mother’ in it) + fish oil (omega 3 at 1000mg dose) krill oil is even better; + pineapple which converts to alkaline in the body, as does lemon & Apple cider vinegar; + Gotu kola herbs & Devil’s claw herbs steeped in hot water as a tea ( you can add organic green tea, grated fresh turmeric & ginger, manuka honey. Drink hot or cold & dilute if necessary.(sorry one line removed as I don’t allow advertising on this site unless I support it) Google alkalinising foods & avoid acid- causing foods also follow anti-inflam diet. Also anti- inflam tablets sparingly if possible as they upset my tum. + REST!!!! If hubby or partner can’t take the chronic fatigue then show them the door. You need support but you have to take charge of your own health “Pysician heal thyself” as the Bible says. Not everyone understands or wants to understand. Good luck and I wish good health & a life free of pain to all. Be gentle with yourself.
I’m in week 5 of RRV. This was lovely to read and has given me hope. I feel despair and anger at how debilitating it is, but I won’t let it own me. Thanks for the positive vibes.
I’m at 9 weeks now it comes and goes , just when I think it’s gone it turns around and bites me on the ass. Was fine yesterday and today I can hardly walk it’s doing my head in
I’ve had RRV for 3 years. Initially I went down like a sack of spuds. Nausea, vomiting, fevers & intense joint pain and chronic fatigue. I was unable to walk for 2 weeks. My diagnosis was quick, but the medication from the dr just made me feel worse.
In desperation (2 todflers at that time) I asked an alternate practitioner to investigate. I commensed taking large doses of olive leaf extract, spirulina, probiotics & vit C. Although it took several months before I felt ‘normal’ again, this treatment gave me some vibrance which I was severely lacking. I do gentle walks and swim regularly & if I feel a little run down or unwell, i bump up the dosage of all of the above mentioned. I stay on a maintenance dose normally. Being ‘gentle’ on your body and ensuring you get plenty of sleep is an essential part of life now. Plus a good balanced diet helps.
Not everyone suffers to this degree, but if you do, look after your body as naturally as you can!
Thankyou. Thankyou Thankyou. The health sites that contain information does not do justice to how incredibly “ill” ive felt. After a week of crushing immobility, my feet eased somewhat but waves of weakness/dispair would wash over me. At night i would cry and have vivid thoughts. I actually tried to get my affairs in order. I truly felt I might pass away. When I could move (day 7) i creackd to dr for bloodwork. I cant put my daughters hair tie in, I cant hold a pan of dinner, or put pressure on the sorts parts cause they just give way.
Thanks to all for your comments. I am 47 and was extremely active until I got RRF. Its been 4 months now since. I still cant lift my right leg up enough to put on a sock standing up. This used to be very simple. My feet still ache in the morning and after driving for a while. When I walk I feel like I’m 100 years old. I have bouts of fatigue and keep putting off chores around the house that I would normally jump at to do. I didn’t realise how long this would take to shake. My fingers are crossed that a cure is found as soon as possible.
Take care all.
Yeh.. same. Muscle density reduces greatly. Somedays i cant even open a twist lid on a bottle
I got RR in 1996. I woke up in the middle of the night with a fever and collapsed on the floor. Went back to bed but acute pain in the foot made me think I had broken my foot. Pains then stopped in foot and then went to my hand. No doctor could tell me anything. I read about RR in the paper but my GP said it was not in NSW. Remember this was 1996.
Went to a PRofessor of Rheumatology at RPAH who couldn’t find anything wrong. The pain and fatigue cost me my job, and finally, my marriage.
In 2003 I had recurrence and went to a Neurologist at St Vincent’s Hospital in Sydney who sent me for a blood test which showed up acute RRV.
Since then, whenever I am ill with anything I get a recurrence of RR. I am now 68, I was 54 when I was bitten by the mosquito on the Central Coast of NSW (Killcare). It is severe this time and causing me to search for some real advice from long term sufferers.
Has anyone out there had RRV for 10 years or more?
I also was diagnosed with RRV in 1996, the bouts or flare ups have finally become less often though I am at the moment in another flare up after about 14 months or so from the last one, it took me a day or so to recognise what was going on. I had blood tests done a couple of years ago which still show the virus in my blood, so I know that’s what’s going on. When diagnosed I was given no treatment options and no support. Had to just work it through. I seem to have contracted the nasty thing when pregnant and so had an infant and a 7 yr old to look after, so no time for being too self absorbed or the luxury of taking it too easy.
Yes.. I have had RRV and BFV since 2003..
I used to always be a hard physical worker. As I get older symptoms gwt worse and intolerance to foods is getting worse.I have found that if I eliminate bread and alot of carbohydrates.. the bones dont hurt as much cos apparently carbohydrates cause inflamation. I cant yake tablets or get adverse reactions when i do… so i have found that a glass of water on wake up.. then a banana and slice of fresh pineapple for breakfast reduces the heart palpultations side of things. Then an egg.. scrambled or fried with half an onion and parsley definitely helps about 11am. Now I try to keep my diet to vegies (sweet potato insted of potato) and fruit (body rejects strawberries and mangos)… i find i feel much better. Caffeine intolerance came with RRV. And cant do softdrink or cordial or alchahol. Apparently due to * energy * factor. (Kinda like caffeine). Keep your diet as natiral and semi cooked or raw as possible and it all helps. Good luck. Medication CREATES more havoc than it fixes
I was told in 2005 I had RRFand Glandular fever and have been living with both ever since. I have flare ups, usually when I am stressed and I seem to get it after long bouts of heavy rain when the mossies are in abundance. You just keep going, look after your health. I take fish oil, vitamin e, c and vital greens (it gives you a real boost) I go to the gym and keep my body fit. I have a good diet drink lots of water and take extra protein. Somedays I fell like staying in bed and giving up but I have a husband that does let me wallow in self pity. I will not let this defeat me if I have it for the rest of my life. I am 52.
All I can say is stay positive, yes and listen to your body. it tells you when you need to slow down and when to speed up.
It has been 11 years since I was diagnosed with Ross River. I had a particularly bad case and got mine in one of the worst outbreaks in WA. I t affected me badly for about 3 years and then on off for thenext couple of years. To this day, if I dont maintain my fitness and health and get run down then I get aches in my elbows and toes, they still swell and debilitating tiredness. I have realised I have to stay super healthy to stop re-occurrences.
I have Ross River Virus – i have had it for 6 months. I got it when i went camping at a festival in the Hawkesbury River in February 2010. i arrived on the Friday and by Saturday night i was stuck in my camping bed with the worst flu like symptoms i had ever had. i felt so sorry for all the other campers because i was blowing my nose like no mans business – felt like i was trying to get something out that i couldnt. i woke up in the morning after having no sleep and went to the toilet and noticed a small red mark on my right foot (pinky toe) – like a mozzie bite that had been scratched but wasnt itchy. i felt terrible for the whole weekend and had chronic diarrohea. i took a tablet to stop the diarrohea and got through the next two days until i got home, complete with nosebleed on the way home aswell. its was horrible.
the next day (so prob 3-4 days later) the bite on my foot really stung – i thought i had been bitten by a spider and i also noticed a rash on my butt. well my boyfriend did anyway so i looked at it in the bathroom mirror and freaked out – thought i’d got meningities. so took myself to my parents house – by this time it had travelled all over my body. I thought it was chicken pox, meningitis even maybe shingles – i never even heard of Ross River before. So off to the hospital emergency ward – no luck there either – i was turned away with the explanation of ‘well we know what it isnt and it isnt meningitis’ so at that point i thought well im not going to die – maybe its just a virus. so they sent me off with a script for an anti inflammatory.
I saw my sister in the next few days and she actually diagnosed me through a friend of hers (who had gotten this a couple years ago). by this time i was in a fair amount of pain and spent days and days sleeping it all off. work was non existant for around a week and then i made myself get back into it. i had a sharp pain in my right ankle and a sore and aching index finger on my left hand aswell as elbow, hips, knees and feet aching. The pain in my ankle and my index finger lasted approx four months. it felt like my bones were twisting inside me and growing almost. it was strange and made me feel sick thinking about it. i hated it. Then the tiredness set in and it hasnt gone. im still tired all the time.
My boyfriend gets a little upset by me being tired all the time, but i literally cant help it. Although he understands, it does impact on other people aswell. i was always outdoorsy and energetic so its a big change for me to be so lazy . i am just starting to think about getting back into some excercise. my doctor told me to not excercise while my bones are inflamed as i will do lasting damage, but 6 months later, i need to do some slow excercise to start off with and hopefully i’ll get over it. i have been pretty gentle with myself – that definitely works aswell as meditation etc, baths and hot spas have been my saviour and mostly sleep. i have not taken any medication to get through it as i dont believe it would help me much and i may just start relying on it all. The only thing i do is try to eat plenty of healthy food and try to drink as much water as possible to keep my system clear. i try to get sunshine when its sunny and i take vitamin c tablets.
i have not tried the Vit C shots or anything as personally i just dont think it would do anything for me – unfortunately i think this thing just has to run its course and once its over – its over but only for now – it will come back regardless of what i do and it will come back when im sick or my immune system is down. There isnt too much i can do about it.
These days i try not to think about it too much or i dwell on it but i am constantly searching for other peoples stories and to see how they cope with it all – thanks for the threads above. However different our stories might be on Ross River – im sure that they are helping others to find out how we all cope with it.
I have found all of your comments really useful in relation to Ross River – after doing some online research on the many health sites I couldn’t seem to find anywhere that listed all of the symptoms I have been experiencing.
In late May I woke up with a swollen left thumb and my left ankle felt like I had a broken bone (very painful and very difficult to walk). I really felt like I had a severe onset of arthritis. With work pressures I soldiered on knowing that I was only a week away from a holiday overseas.
For the entire three week journey I was in pain, and became more tired as each day progressed. Being my first trip to the US though, I kept pushing myself and took rest where I could as I was very apprehensive at seeing an overseas doctor.
I returned home and the symptoms just seemed to escalate – swollen aching ankle, some fingers, left thumb and wrist, dizziness, a few night sweats here and there, inability to concentrate, fatigue, swollen lymph node under right armpit, feeling that my head was swollen and my ears needed to pop and uncontrollable shaking in my hands (and sometimes my whole body). I had gone back to work but as soon as I had an opportunity I headed to see my doc and blood tests revealed RR. That was three weeks ago so figured that I have had the fever/virus and related symptoms for about 11 weeks now.
I find that anti-inflammatories and slow release (osteo) panadol have helped to relieve some of the pain/swelling by about 50% but I will certainly be purchasing some vitamin C tablets tomorrow (although I normally have a good diet of veges/fruit/tuna most times). And yes, I will be trying to take it a little easier than I have been. I am just hoping that I can shake the fever soon.
Hello Sue,
Thankyou for your story, i have been looking up the internet for any info on people that have rrv that have had the vitamin c introvenous as i have just started 2 weeks ago . i have rrv i was diognosed 18 months ago was sick for the last 2 years, thought i was going bonkers as everything started to breakdown in my body. i can remember being bitten on the nose in china and it got very badly infected. but im glad i finally no what im dealing with, i have reserched it seems like i have a very bad case i read that some people get over it within 3 months (lucky ducks) anyway the pain in my joints is constant, especilly knee joints contant burning it travels most times in knees down my shoulders, hands burn and swollen, under my arms that muscle burns mainly left side, also down front of legs and front of arms. i have constant pain whilst trying to sleep, i have fever at night with horrible nightmares, i wake up with headachs in the morning because i clench my jaw during the night because of the pain im in nedless to say i cant sleep well. i have built up an intolerance to a lot of foods now and my body is always rejecting something that i used to eat . i have an intolerance to smells ie purfumes and products seem so strong now. i have a diguestion problem the food sometimes feels caught in the osophigus spelt that wrong? thats just to name a few symptoms, and no im not a fruit cake , i am a very strong person thats been through a lot in my life and im possitive but i have never had anything to this such extent that i would never in a millon years wish this on another human being.
i feel for anybody that ever gets this. i will when i get better try to help others with this dibiltating virus.
if anyone out there has had this for a few years and has fully gotton over this i need to hear it. also does anyone think the vit c intro works im having 30 mls 2 times a week and i feel like im in hell but i think its getting to it . need some one to reply please. thankyou maddy
Hi – a friend of 41 years duration, was so sick & in so much pain she was preparing to take her life, until someone recommended (product name removed) which is produced & sold in the US. She said her symptoms and pain disappeared within days & she is now pain free. We are in Australia & I am as a journalist, quite cynical of so called wonder cures however my sister & I & my partner have been in excruciating arthritic pain from RRV so I decided to try them. Also another friend tried them. My sis thought they made her breathless but the rest of us have had wonderful, quick relief from pain. I still take anti-inflams occasionally after or before a workout. Also I concentrate on an anti-inflammatory diet to get my body in a more alkaline state, 1000mg fish oil daily, gotu kola herb teas which help fight inflammation, Apple cider vinegar (the type which has the ‘mother’ in it from a health store), freshly squeezed lemon, pineapple, all of which convert to alkaline in the body, and I juice and eat fresh turmeric (organic) & grate into teas, adding manuka honey if necessary as a sweetner. The Buble says “physician, heal thyself” and that’s what you need to do. Good luck & I hope you & all who read this find relief from the crippling pain. Xx
A product called ZEN has given me immediate relief and enabled me to walk again. Its with the linaments at the pharmacies. Its made from natural barks. If the product name is removed from this page, you can find it by looking for the bottle with 3 letters starting with Z.
Hi I am month 5 of RRV and I had the vitC IV along with magnesium and zinc at times, and I cannot tell you if they helped: I went from having it twice weekly to once weekly and now every fortnight : just because I have the terrible tiredness now I wasn’t having…attribute to Vit C IV??? I just reassured myself that anything that is giving my immune system such a boost can ONLY help! I have cartilage loss ( MRI confirmed) and I have oste arthritis which I probably had before hand and I don’t not feel positive I am sad to say, that the joint pain will ever fully go..I certainly hope so.
Hi, I am the same as you. I have Finromylagia as well and they flare each other up. I have been sick for 19mths. I have improved slowly at times snd then will relapse, each time being less severe with longer gaps in between. My whole body burns…EVERYWHERE! No-one understands when i say im i pain, exactly what I mean by that. Its painful to move and psinful to be still. Initially i tried Pure Vit C that was really strong, turmeric, fish oil, echinacea, pro-biotics and magnesium, plus im gluten free. All helped a little but it was marginal. So i stopped. What did seem to help the most was Copaiba oil from Doterra taken orally. Its very much like CBD oil. I stopped taking it as was feeling good after 16mths, started excercising finally (was couch ridden jn first 6wks, then a 5min walk would make me sleep an hr) and caught a cold, am stressed and winter hit and im in pain again. At least i can think straight now and dont drop everything all day like in the beginning. Im hoping it clears completely eventually.
Hi Katrina, thanks for sharing about your experience with Ross Rive and Fibromyalgia. I find that a low oxalate diet can also help with pain symptoms too. All the best, love sue x
I am currenlty in week 6 of RRV after being diagnosed at week 4 and yes the pain can be terrible and nothing seems to help. My knees are swollen and my elbows and I know what you mean about the aching thumbs. I kept working until my blood test came back positive after 3 lots of bloods being done and this was hard, I wobbled around and was drained by the end of the day. Mine came on very quickly I came back from camping the Tuesday after Easter and woke on the Saturday aching from head to toe. Anyway I am at home now for 3 weeks resting, some days are good and some days it is hard to walk. I liked what you said about being gentle to yourself and I am going to take that advice for sure and start saying no and looking after myself. I know I have a long way to go but your story has been good to read. Being gentle to myself is something I have never done and it is about time I started. I have wanted to try the Vitamin C as I have read this is good as well, but I have had the trots as well for the past 6 weeks so Vitamin C is not a good idea at this stage.
Hi Sue,
I had Ross River Virus about 10 years ago (1999). I woke one morning after an extremely windy night, saw a fairly large wattle tree blown down, over a number of pretty small rainforest trees we had planted, so strong woman that I was I put my boots on, grabbed the saw and cut off the branches and freed the other plants, quite a feat. I wondered why my right hand and my left foot were rather sore, but went on for a few days at my usual hectic pace. I had a morning in Lismore with my husband, wondering why I was limping across the road after him. After a couple more days I went to the Doctor who did a blood test, which a few days later came back positive for Ross River.
Over the next few days I grew more and more exhausted, to the point where I could only have a shower after eventually getting up and then sitting/laying on the lounge while my husband got breakfast. My foot and hand had swollen up and were both very painful, and all my other joints became quite sore, but not as bad as yours thank heavens. The other thing that was very apparent was that I could not concentrate on anything. The complete exhaustion lasted for a couple of months. I improved a bit and tried to work on our property, but could only do so for about half an hour at a time and then had to rest for about an hour.
I lost all my independence, could not drive for 5 months due to my inability to concentrate and therefore could not go anywhere on my own. And my right hand was still tending to swell up whenever I tried to do anything. I learned to write with my left hand etc.
After 5 months of this I begged the doctor to put my onto a reliable alternative practitioner (he himself agreed he could do nothing to help me) and I had a very long session with a homeopath who pulled me apart to get down to ‘my personality’. He told me it would take about 3 weeks to be back to normal and that I would not suffer recurrences after. That was thankfully what happened. My sister and a friend of mine both suffered recurrences for several years after their initial attack.
After a healing workshop I had a very strong reaction, ending with several days in bed hardly able to walk and quite exhausted. I did not get my normal energy levels back for 2 months. The interesting thing also tho’ was for a couple of days I felt that I was also revisiting much of the pain that I had had with the original Ross River Virus episode. I concentrated very much on being with that feeling of pain and it passed on after a couple of days. Hopefully that helped me clear the effects of having buried stuff deeper in the body with the work I did with the homeopath.
With love,
B