About

Hello world! This is my first blog, and the reason I’m writing it is because I recently contracted a mosquito-borne virus called the Chikungunya virus while I was on vacation in the Caribbean. I live in New England, and the mosquito that typically transmits this disease (the Aedes mosquito) is not native to this part of the US (but is in the Caribbean). Hence my reason for writing this blog: I am pretty isolated up in New England with this miserable virus. I have never met anyone who has also had this virus, and even the best Infectious Disease doctors in the state have limited training and experience on this particular illness; although I am under the care of a couple of docs (both internal medicine and infectious disease), I feel that I have nobody to relate to or “compare notes” with, especially on a personal level.

 

I’m writing this blog to share my story of how Chikungunya presented itself in my case, and discuss how I reacted to it on a personal level. I remember on the 4th day of Chikungunya symptoms, lying in the emergency room staring at the ceiling thinking, “this is pretty scary. Just breathe.” I like to think I’m a tough girl, but the symptoms are so bizarre with this virus that I honestly had no idea what was going to happen. The first week is like the 7 plagues: each day I woke up with a new bizarre, and in some cases terrifying, symptom. And I was in pain. While I was staring at the ceiling contemplating my Chikungunya demise, my husband next to me was furiously Googling the keywords “Chikungunya rash” wondering if the scary rash I had would result in some crazy anaphylactic allergic reaction/ultimate death (spoiler: no, it didn’t). Sure, the CDC, the WHO, Webmd, Wikipedia etc. all have very detailed “spec sheets” of typical Chikungunya symptoms with respect to a wide profile of patients. There are tons of statistical analyses out there and a plethora of explanations of the mechanism of transmission. Although I had all the statistics, at that point, lying in the hospital bed, I was really looking for someone out there in cyberworld I could relate to on a personal level. I was desperately seeking a Chikungunya blog to no avail, and hence I’m really hoping to help anyone out there who may be seeking the same thing, or who’s going through the first phases of the disease and wants to know about someone else’s experience. I’m also certainly speaking to those who may not have had the virus, but who are curious as to what Chikungunya is and its effects on day to day life.

 

Some both relevant and non-relevant background on me/ my medical history: Overall, I’m a very healthy 27 year old female. Before Chikungunya, I exercised 5-6 times per week (lifting weights, yoga, spin, running etc.). I accomplished my goal of deadlifting my body weight earlier this year, and I continue to power lift toward new goals. I have a pretty high stress job as an engineer, and I commute via public transportation and walking (I’m on my feet a lot). I’m married, and we just bit the bullet and bought a house in the ‘burbs about 6 months before I got sick. I have a resting pulse in the low 50’s, and my blood pressure/cholesterol/yearly blood panel is excellent. I’m a regular flosser, so much that my dentist gave me a high five last time I was in for a cleaning. (I’ll explain why this is important later.) I take a multivitamin every day, and I eat a pretty balanced diet (except for the fact that I enjoy the occasional Sunday afternoon mojito or Pinkberry dessert.) If there was a gold medal for sleeping, I’d win it. I fall asleep instantly and could sleep for a dozen hours if I wanted. Never wake up in the middle of the night, don’t wake up with night terrors or nightmares typically, and feel well rested most days.

 

Major surgeries? Had my appendix out at the age of 10, and standard wisdom teeth removal in high school. Significant illnesses? I had pneumonia when I was 22, and I used to get frequent colds and sinus infections before I got into exercise about 4 years ago. Since then (in the past 4 years), I have had 3 colds. I’m thus a strong believer that fitness is the secret. No history of joint pain, no history of mental illness or depression (I’ll explain later why this is also important). Overall a happy healthy, and for the most, part bright-eyed and bushy-tailed 27 year old.

 

As I write this, I’m in the 5th week of Chikungunya (spoiler: i’m still feeling it.) Each day of the acute phase I actually wrote down my symptoms since I knew up front that, in this area of the world, Chikungunya isn’t hugely well defined or researched. I was misdiagnosed during the early stages of the virus by one ID doc as having dengue fever (prior to blood results, which confirmed Chikungunya positive and dengue negative), and another ID doc I went to actually pulled up the CDC website to read about Chikungunya symptoms as I was sitting in her office asking her questions. (Probably could have done that myself, but that’s a story for another day.) I wrote everything down with the intention of writing this blog, so voila — intention manifested. In this blog, I’m going to rewind back to Day 1 (and prior — I’ll discuss where I traveled) and detail exactly how I felt each day during the acute phase, and then conclude with how I’m doing now in what I believe to be the “subacute” phase, 5 weeks later. I hope this blog will end there (i.e. that I’ll be feeling better ASAP), but who knows how long this thing will last. The doctors certainty don’t!

 

Before continuing on, I must make a couple disclaimers: Disclaimer #1) I am not a medical doctor, nor am I in any way qualified or authorized to suggest medical remedies or infer that the home remedies that I tried ease pain in all cases. This is my personal experience with the virus intended to be taken at face value. Disclaimer #2) N=1. By this I mean I am only writing about myself, which means that the sample size is one here (shout out to my statistician friends). What happened to me probably isn’t representative of the greater population of those infected with Chikungunya. Again this is to be taken at face value.

 

This blog is organized into, what I found to be, the three distinct phases of the virus. The ACUTE PHASE was the first 11 days of the virus for me, the SUBACUTE PHASE was the following 3-4 months, and the CHRONIC PHASE is everything after that. If you’re on a mobile device, click “Menu” at the top of the page to navigate the different phases of the illness. If you’re on a computer, there should be a horizontal bar at the top of the page containing links to the different phases.

 

I hope you find this informative!  Happy reading!

 

302 thoughts on “About

  1. Nat

    Hi Janice yes even I feel slightly dizzy specially at night , u drink around 3 to 4 litres a day , yes chikungunia affects the skin too n muscles along with joints .. I feel heavy in the jaw too like Kim mentioned earlier specially if I’ve chewed gum the day before ..
    stay strong Janice it shall pass

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    1. Rosita

      I don’t remember feeling jaw heavy, but now, apparently I’m with a weird allergy 2 something else …as my face went with a weird rash wich I can just describe as if some1 gave a punch on my cheeks,and it itches a lot, and I’m losing hair, apart from the fact I made blood test & it did show abnormally high lymphocytes, but I have no clues on wha’ is it. Can it be related to chikungunya? Who knows. More any1 here has those odd symptoms? And happy New Year 2 y’all in advance.
      Looking forward,
      R

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      1. Tara

        Happy new year’s to all of you as well! One thing I have been trying lately is trips to the spa. Massage and reflexology actually makes things worse but a good soak, sauna and steam room helps. Of course I can’t do this all the time but when I am able to, it does help

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  2. Kim calder

    Happy new year everyone.

    Does anyone get really bad bouts of gastrointestinal problems from the virus. I have just had a very painful few weeks with upper and lower stomach pain. It almost feels like the joint pain in my stomach and bowel. I felt quite down about it. It is 2 years today since I first became ill and I am really hoping there will be an end to the virus soon.

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    1. Kimberly Taylor

      I’ve lost 40lbs in 18 months due to GI problems from the virus. I also have spots on my back and side that resemble a rash and a full blown looking rash covering my entire back when I get out of the shower/am hot. It goes away quickly but the other spots are left. I’m going to my doctor tomorrow in hopes of finding something new or at least ruling things out. I’ve held off because the only answer I ever get is that it will go away and to be patient. That’s not really helped any, 18 months of suffering has been enough.

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      1. Kim

        I agree with you Kimberley it is along time to suffer with GI problems. I felt quite down over the Christmas period. I had been careful what I ate and drank and still had problems. Over the last few days things have cleared up. I have slept a lot and took anti diahorrea tablets for few days. A lot of pain has cleared up. I find that my Gi problems are quite often the start of a relapse then the pain and fatigue follows. Janice the doctors have called the GI problems. Post viral IBS I was prescribed an light does of antidepressant and fodmap diet. I chose not to take the antidepressant as I already take a different kind for anxiety.

        My pain is variable and moves to different joints.

        My neck and back has been uncomfortable but generally I always have some pain in the bones of my feet and hands.

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    2. tara4ad

      Hi all, I was diagnosed with chikungunya in 2013. I’ve had GI problems since then as well as back and hip. Back and hip pain continues to this day and GI problems have gotten worse. Have now been diagnosed with ulcerative colitis. The infectious disease doctor I have seen says the colitis is not related but I can’t help a question that. How many others have GI problems? Has anyone else been diagnosed with other auto immune diseases?

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  3. Janice

    Hey Kim are you taking any antacids ?
    I also have to pop one every alternate day , I have omez d .. what is the doc saying about the tummy issues

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  4. Janice

    It is very tough , I felt like committing suicide the other day
    Then I keep telling myself it will pass , but everyday o wait n it doesn’t go

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    1. Kimberly Taylor

      I’ve been sick and I’m almost done with my antibiotics & my boyfriend cooked fried pork chops, I haven’t had anything fried in forever, so between the antibiotics & fried food I’ve been awake since 3 am with indigestion. I’ve taken some Pepto, starting to feel some relief. I’ve not had a lot of indigestion, but large meals make me more tired than I already am & I’m either not going to the bathroom or I’m spending all day in there, which I’ve tried to modify with diet. High fiber foods & nutrient rich veggies and such. Unfortunately they aren’t always the best for fattening up, but junk food makes me sick. I’m hoping my doctor will give me some advice today when I see him. I’m hoping to find a healthy protein and do some moderate exercises to increase muscle tone, I can’t lift a damn thing anymore.

      I started seeing my old psychiatrist about half way into it because I pretty much got the idea from everyone that I was just crazy (because, you know, ChikV doesn’t last more than a month or two according to the “experts”) & he has helped me manage the depression & pain. I’ve been suicidal multiple times, sometimes for weeks on end, yet still had to put on a good face for work and family, which made it even harder. I’m under a lot of stress at work and everyone yelling at me for being too skinny has caused increased anxiety lately. Man, those were some dark days, but I made it through somehow…. Having anxiety & depression (finally well controlled prior to the ChikV) made it all the more complicated.

      As of right now I’m mostly pain free in my joints. I’m on a clean all natural diet, I’ve eliminated all the junk from my diet, as I’m a rheumatology nurse and we advise it for all patients. I went gluten free too. That’s kind of backfired on me!! I’ve lost too much weight. I’m damned if I do and damned if I don’t at this point. I also think being too skinny is turning my boyfriend off… He liked my big butt 20lbs ago.

      My main issue is the severe fatigue, stomach issues and neuropathic pain. My body feels like it weighs 3 tons and I can’t move some days. The fatigue isn’t something 12 energy drinks could fix & if I get sick don’t even get me started! It’s all 100 times worse.

      I’ve started modified yoga, as too much and I can’t really recover well from it & I also get massages regularly. I ruptured a disc in my neck 6 months ago so I try to be very careful as to not injure myself. The yoga really helps, well it’s mostly just good long stretches! My hips, hands and wrists hurt the most right now but I have a desk job and that’s to be expected to a point. It’s pretty much whatever I’m over using at the time!

      Hang in there- at least we aren’t alone!

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      1. michelle

        Hi Kimberly
        i’m sorry you are suffering so much. I read you message and it brought back so many memories.. not great. I live in the Caribbean and its been about 4 years but about 80% of the island got sick. Most of your symptoms will go away with time.I promise. I went through days of being too sick to stand for each morning ( and I had to get to work) to just occasional bouts of dizziness and finally complete recovery. There was a day when I couldn’t get into my house because i was too weak to open the gate. it’s just a slow process and many doctors don’t seem to understand the disease well.
        Joint pains and weakness in the hands are a common feature, I used a soft ball that can be squeezed like a massage ball to strengthen my fingers. It really helped.Some over the counter pain relieving creams may also help. They work for shorter periods but do less long term damage to the body. You might want to research the side effects of Planquenil.
        Also see if tai chi works for you. i was doing it before and it helped my recovery a lot both mentally and physically.
        Most of all know there is a light at the end of the tunnel. It will get better, it is a debilitating illness and you can get relapses (that will feel like the illness all over again) but everyone I know have fully recovered. So hang in there on the bad days remember it passes.
        Oh another strange thing, It takes about 5 days for the test to come back by which time you would have already felt as if you were dying ( worse case) or had a very bad flu. so by the time the doctor tells you what it is you have, you are already experiencing the second stage of the illness which makes it more upsetting.

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  5. Nat

    Aw Janice have faith , please distract yourself with things that make u happy !
    Kimberly yes my doc said it remains in the skin as long as it remains in the joints , that’s why the rashes , I bruise a lot every since I’ve got chikungunia!
    Kim yes sometimes I feel the GI problems are worse than the muscle pain , but then on other days think otherwise , ya the pain causes the fatigue , cause everything gets so stiff it’s hard to move ..

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    1. Kim

      Janice take care of yourself and hang in there. Try to seek professional help. I felt the fatigue made me quite depressed but it did pass and I don’t feel so down about the illness now.

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  6. Janice

    Kimberly it’s been 4 months for me !
    You guys must be laughing at me that only 4 months !
    I am not mentally strong as you people !
    28 years I feel my life is over cause I can’t do anything without being scared.,
    My frnds my age are enjoying life going out travelling etc n I feel like an old lady !
    I am planning to commit suicide by end of jan if I’m not ok

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    1. Rosita

      Plz don’t do it…I have serious familiar problems, depression, GAD (Generalized Anxiety Disorder) PLUS chikungunya, I also had those thoughts, I even tried it (!), but I told a friend & she recommended me 2 go into therapy, and it has been helping me. I’m into 10th month of therapy. I know chikungunya pain is intense, and, to be honest, I’m not cured yet, even thought it has passed 2 yrs, and maybe I never get cured, but I did decide I’ll keep going. I won’t do suicide, ’cause my family and my friends need me alive. That’s why yuh shouldn’t do suicide. Think twice before doing it…keep strong, sweetie. Yuh’ll win this battle against CHIKV, just have faith and do wha’ u like, as the other person did suggest u. Try finding therapy, or even ring a national suicide prevention number, if those thoughts are uncontrollable. It’s sigilous, I promise, and I hope it helps😘
      Sincerely,
      R

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    2. Kimberly Taylor

      I was 30 when I got sick & I thought my life was over, as well as 18 months later I’m sitting here in the doctors office for more tests. When I was suicidal from ChikV I called my psychiatrist. He put me on medication for the pain and fatigue. So don’t give up. We’ve probably all been suicidal at some point during the virus & we’ve made it through so just get some help. If it wasn’t for my doctors I don’t know if I’d still be here. Just keep trying, and don’t stop until someone listens to you.

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  7. Kori

    Hey,

    Have had Chik-V for about a year now (positive blood test) and struggle with pretty much every “calssic” symptom everyone has.
    But has anyone experienced a sore throat long after the intitial onset with Chik-V?
    This was also how it started for me, like a really bad flu with a sore throat and pain. But the throat issues (along with pain) doesnt really go away. I’m much better in the flu symptoms but not completely well.
    Feels like Im having a lumb in my thoat along with “airplane ears” almost every single day.
    Thanks!

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    1. Kim

      Hi kori

      I had a bad throats with some relapses I have had. i would wake up each morning with a sore throats for about 6 weeks.

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    2. Peter GEERTS

      The sore throat and airplane ears are the result of heartburn. Need to sleep head up, slant your bed is most comfi, and take ranitidine until the gastric reflux stops. I am in my 6th month and have episodes of heartburn and fatigue that last a week. Last Saturday i had a high fever attack and i entered another episode. I am loosing weight because of the gastric reflux. I used to be a very active man, good stamina and immunity and it feels like nothing of that is left.

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    1. Kim

      Janice I do need a lot more sleep than I used to and when I had a relapse in October this year which ended up being like chronic fatigue I got very depressed. I am sure the fatigue had a lot to do with the depression and I felt like the virus was affecting my brain. I made appointments with a phyciatrist and a psychologist straight away. They helped a lot. My vitamin d was very low so I started taking a supplement and I am sure this has helped. I feel a lot better now the depression has lifted with the fatigue. Maybe have blood tests to check all ur vitamin and mineral levels as I feel being low in some of these can make you feel really fatigued and flat.

      Hope you are feeling better and have some relief

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  8. Janice

    Kimberly Taylor and Kim , have your conditions improved since 4 months into the sickness ?
    Which symptoms hav remained n which have gone , was the fatigue more 4 months into the sickness or now at your present situation? Was the GI more back then or now
    It will be helpful to read your replies
    Thanks

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    1. Rosita

      Janice,
      I still have some joint pain, not as intense as it was, of course, but I’m not a good reference since I’m suffering with this 4 over 27 months. But I’m glad u won’t do suicide 4 now. Just wait & have faith. It’ll go away..I still have wha’ I call as chikungunya relapsss, that’s when symptoms return, but with less intensity than it was on acute phase, of course! Now, wha’ calls my attention is that when I did blood test (last month,, BTW), it did show high lymphocytes & eosinophils..I’m having a weird rash on my face (I described it before, go see my comment, before I told u not to do suicide) + hair loss & sloughing of skin close 2 hair & my foot..is more any1 experiencing those symptoms? Can it be delaied CHIKV effects? Wha’ do y’all think?
      Sincerely,
      R

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    2. Kim

      For me the fatigue and GI were pretty bad at 4 months. These have certainly improved and I have some times of no GI Now. The fatigue was in relapses for a few weeks and then I would feel
      Good for a few weeks. The fatigue has been much better after the 18 month stage it cleared sometime in October and I have much better since and sometimes had glimpses of my old energy. The joint and muscle pain is also much better than it was at 4 months. When I have had relapses the pain has been uncomfortable but not as painful as in the beginning or during the sub acute stage.9

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  9. Nat

    Does chikungunia have a connection with insomnia?
    I feel sleepy but just can’t seem to fall asleep easily at night and keep having disturbed sleep !
    Anyone else experiencing this ?

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    1. Rosita

      IDK, I didn’t experienced it. I just had trouble sleeping on acute phase but I attribute this to the high fever. It wasn’t exactly insomnia, but yah trouble sleeping, but I’m fine now.
      Hope it did helps,
      R

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    2. Kim

      Nat when I have had relapses i didn’t find it difficult to go to sleep but I found I would wake in the night with pain and wake in the morning feeling completely unrefreshed.

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    3. Andreas

      Hey Nat,

      I struggle with insomnia and have a disturbed sleep pretty much every night since Chik-V.
      Had it for 11 months now and don’t really see an end to it. My pain is better overall but the tiredness I experience is enormous.

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      1. Tara

        . Hi all. I have just been diagnosed with sciatica and I am getting an MRI in a couple of days. Pain goes from my lower back to my hip and down to my feet. It started when I got Chikungunya back in August of 2013. Based on what I have read online, it looks like there can be links between Chikungunya and spinal cord nerve damage. Has anyone else gotten a similar diagnosis?

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    4. Peter GEERTS

      Chikv is neuropathological and overstimulates the fight & flight autonomous nerves. We are all short of vagus stimulation (rest & recreate) pls look for sites how to stimulate your vagus to offset the sympathetic system, which gives you alertness, stress, tense body and mind, stomac reflux, constipation, fotophobia, impotence, all very very tiring. My mind sometimes doesnt stop racing even at night. Some methods of vagus stimulation really do well in those times. Meditate and yoga.

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      1. Peter GEERTS

        Actually a bit of stretching but right enough, not too much, to the amount that you can reach a state of meditation and quietness, where nothing else matters anymore. That is the real vagus stimulation. If you stretch or exercise too much, Chicv will revenge and the next day your muscles will be sore.

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  10. Nat

    Okay cause this has never happ to me before , I didn’t sleep for more than 10 min last night , extremely tired today but gonna not sleep during the day , hopefully can sleep tonight

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  11. Nat

    Ok thanks guys ! I think I’ve been resting at home in the day too , like even working from home !that’s why hard to slep at night !

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    1. Rosita

      Cold weather do intensify my pains..warm weatherdon’t really has nothing to do with it, thankfully, considering my city has warm weather. But when it get rainy (now it’s rainy season here), it do gets worst, although I dare saying I’m not in crisis nor having relapses for now. Yuh? Warm or cold weather do intensify it?
      Wishing yuh a very fast recovery,

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  12. Tara

    I have been feeling worse this winter, I live in the Pacific Northwest and it has been a cold wet winter. I have pretty much stopped exercising except for the occasional walk and my joints are aching as if I’ve done intense exercise. So yes I think the weather is impacting me.
    On another note, I just got a CBC panel done. A number of my white and red blood cell listings are either low or high. Most website site anemia as a cause of this but I need a pretty iron-rich diet and have never had that before. I am however very tired all the time . I’m going to see my doctor at the end of the month but in the meantime have any of you had any blood work done that shows this? I can provide more detail into what what’s high and low if it’s relevant to anybody.

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  13. Janice

    Yes I think rainy weather is the worst , I remember even Chris mentioning that when it was humid she feels some joints hurt
    Tara I think Rosita mentioned somewhere above on one of her posts that she got some blood work done n her lymphocytes were abnormally high !
    Did you check your b12 for anemia ?
    If you have anemia (b12 deficiency ) then you should take a lot of iron rich food as anemia causes tiredness n weakness , u even get those pills to chew , it really helps to raise your iron levels ask your doc

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  14. Gus

    Greetings to you all. I have been dealing with this post-chikungunya chronic pain for 25 months, . The pain started on my knee and fingers but suddenly stopped and moved to my feet and has been there for the last 20 months which make it really hard to walk, I’m bed most of the day, my social life is dead, I was a super sportive person, not anymore, this is hell. Have anyone tried a therapy with prednisone or methotrexate? How did it go? I’m trying hard to stay patient but this is taking forever.

    Best regards.

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    1. Jessica

      Gus you sound like what I was feeling for close to 1.5 years. I could barely walk, climb stairs or type on the computer and I’m a real estate agent! I took prednisone frequently which is terrible. It just masks the problems and caused me to gain weight. I finally got my doctor to give me Humira and I feel virtually cured since then.

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  15. Nat

    Has the fatigue shown any improvement for you guys or is it the same since the first few months of catching chikungunia ?
    Also what are the techniques that are helpful to improve stamina, fatigue etc ? I just do daily stretches n a 1.2 km walk every night after dinner ( also helps with digesting food )
    Earlier I used to not even do this much but since I’ve been doing this I feel it’s helped me with my stamina , but I want to slightly start pushing my activity more , not heavy weights etc I’m aware but just slightly more but also don’t wanna do too much to end up with aching legs again , so just wanted to know
    Are you all working out n following your normal routine like you guys used to ?
    Just want to know if that would help me get back lol strength and stamina , and also what month since contracting it did u start working out ?
    Your replies would be really helpful
    Thanks guys 😊

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  16. Nat

    I Posted a comment don’t know where it went
    Anyway I would like to know has the fatigue got better since 3-4 months or is it the same ,
    Also do you guys workout normally ? What’s your routine does it differ from earlier ?
    I just started taking 1.3 km walks at night to help digest my dinner too , also started with stretches in the evening , been doing this since 2 months which has increased my stamina , but I would like to push my self a lil more , wouldn’t be doing heavy weights etc for sure but would like to know if a little bit of exercise has helped you people ? Do gain back strength and stamina without putting pressure on the joints , can u please share helpful exercises or how long u walk ? And if it has helped the fatigue
    Your replies will be helpful
    Thanks
    Nat

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  17. Janice

    Yes I would like to know that as well , whoever is experiencing fatigue , how did u ppl cure it , also is the fatigue better after 4 months ..
    sometimes I feel physically I can do it but mentally feel lazy like a depression , the excitement in doing things has gone ever since I have contracted this disease , anyone have any tips ?

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    1. Kimberly Taylor

      The only way I can work or do anything is with Adderall. It sucks having to take it, but I don’t have a choice, I’d be unemployed if it wasn’t for my psychiatrist prescribing it. The pain is tolerable and comes and goes, and even when it’s aweful I can still stand it barely, but the fatigue combined with pain is the worst experience in the world. I’ve fallen asleep driving twice, enough to call it narolepsy for insurance purposes & it’s just not safe. That was my last straw, I wasn’t going to die or kill someone else because of the stupid virus.

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    1. Jessica

      I feel cured while I am on the Humira. For me the Chik caused me to get psoratic arthritis which is an auto-immune disease. I will apparently have this the rest of my life. I would say I am 95% cured. If I don’t take the Humira or when it gets close to my next dose I can feel the stiffness in my hands and the bones in my feet start to hurt.

      Before this I spent countless hours at the doctors crying about the pain I was in with no one understanding my plight. Everyone said it would go away and it never went away.

      I should also mention I had the most mysterious rash A year after contraction that appeared on my thighs, lower legs and upper arms. It itched horribly. I know it had to do with the Chik. That’s when I started taking the prednisone and realized it made me feel better. It’s an evil drug and only good for short term.

      I have photos of what I looked like about five days after contracting Chik. My face looked like it had aged thirty years overnight. It was the strangest thing.

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      1. Gus

        The doctor suspects I could have psoratic arthritis but it is not sure, I only have severe pain on both of my Achilles heels, making it super painful to walk. I have never used Prednisone before, so i will give it a try, I’m aware of the side effects, but I have been in constantly pain for 6 straight months and I would like to feel relief for some days, I plan to take it only for a month, no more than that., I started today with 10mg, pain is like 20% less.

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  18. Kimberly Taylor

    Soooo. I’ve avoided this blog for a few weeks now as the more time I spend on it the more I concentrate on my continued suffering, which comes in much more manageable & shorter doses…. However I’ve come to say that I don’t and never did have ChikV. 16 months in and I finally forced my doctor to check for antibodies to confirm if I was losing my mind or what & there are no traces in my blood at all. So- how many on here are laboratory confirmed cases? I had very very qualified specialist 100% convinced from day one that I had ChikV. Now I’m going to see the infectious disease doctor to find an answer. He was consulted and is the finest in all of eastern NC, however with the information he was given he gave the go ahead with my diagnosis. No one ever thought I’d be sick this long, and now I’m going to see him face to face and hopefully find some answers. My symptoms are all related to about everything everyone on here experiences, but I think it might all be related to the fact that we’ve all been bitten by a nasty virus and this is how the body responds. I’m an autoimmune/rheumatology nurse for crying out loud & my story is so close to my patient’s stories as well. The GI problems, neuropathic pain, insomnia, brain fog, joint pain, muscle pain and countless other symptoms… All come and go and in no specific rhyme or reason. Sometimes I feel amazing & others like the day I got sick- although the reality is it’s nothing close to that bad but it sure feels like it.

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    1. Wade And Kim Calder

      Hi Kimberley

      That is very interesting to hear. What does your doctor say and did you initially test positive in the early stages of the virus. I tested positive in a blood test for chikingunya in January 2015 when I was first sick after many other blood tests ruled out other viruses. I recently had further blood tests and there were no chikungunya antibodies either. The rheumatologist could not explain why this was so or I could not really understand what it meant. I would like to find out further. Please let me know how your follow up appointments go. I have been struggling over the past few weeks with gi problems again and these have lead on to the aching joints and fatigue again.

      Sent from my iPhone

      >

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      1. Kimberly Taylor

        I was never tested for anything. They called it a cut and dry case, felt positive I had ChikV, maybe dengue but either way they expected it to pass quickly. Through this blog I’ve learned I’m not the only one suffering long term from whatever it is that I caught in the Dominican.

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    2. Rosita

      That’s so odd, Kim..I don’t wanna say that, but…don’t yuh think can it be fibromialgia? Or a psychosomatic disease? Or even Mayaro (a virus that provokes symptoms identicals to chikungunya)? But remember that this last hypothesis is only plausible if yuh’ve been 2 South or Central America & the Caribbean…Would yuh try seeking an infectious disease expecialist, a psychologist and (another) reumathologst, and keep going ’til someone discover wha’ yuh have, plz?
      Wish yuh a very fast recovery❣️
      R

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      1. Kimberly Taylor

        I would honestly have to travel out of state to get a better Rheumatologist. It’s possible I had dengue or a load of other things. I’m going to the infectious disease doctor to be tested for everything under the sun. I think a real face to face visit with our ID doc will make a big difference. He’s so smart, I wouldn’t trust anyone else. Since ChikV can mimick so many other diseases I’m sure labs and stuff will help greatly. I just kept being told everything would pass, that’s why I’ve waited so long. I knew better I just didn’t want to seem like one of those crazy hypochondriac nurses. I have an amazing psychiatrist who has prescribed meds for the fatigue and other physical manifestations. If it wasn’t for him I wouldn’t be alive today. I’m confident they will find the answers soon. I was just so shocked when everything came back negative. I just went in for a physical and asked him to run the labs so we knew for sure. I’ll keep everyone updated. Thanks for the love!!

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      2. Kimberly Taylor

        I spent 16 days in the Dominican, when I returned I thought I just had jet lag for a few days and then I woke up with a rash covering most of my body, and I was bed ridden for two weeks in pain, I had a high fever, oddly enough my lips were swollen like I recently had cosmetic surgery lol. My employer brought me in for fluids and pain meds daily, so it was definitely a carribean virus or something I caught there. It could have turned into fibro as the long term effects, I’ve considered that. The fatigue I’ve experienced since then has been the hardest, I’ve fallen asleep driving home during the daytime twice. So we’ve just been treating my symptoms and that’s OK with me as well. But it would be nice to know just in case something happens at some point and I can say for sure what happened to me. I now have a new rash that has been present for over a month that they can’t find the etiology of, seeing dermatology for that later this month. All of my autoimmune labs have remained normal.

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  19. Rosita

    I guess I don’t really need visiting this blog anymore, so, goodbye ppl. Thxs y’all 4 supporting meh through my painful although meaningful journey thro chikungunya. It has been 2 yrs & 4 months I got it, so, I guess I did learn on how 2 cope pretty well with post-CHIKV life, maybe she 2 my young age (16, almost 17) & almost total absence of sequelae, despite that occasional relapse…so, goodbye. Have a good CHIKV-free (forever, I hope!) life & fast recovery, y’all. But don’t forget relapses can (and probably will!) happen at any point, reminding us of how strong we’re really, by proving ourselves and our fams that it isn’t a psychosomatic disease, AKA that the problem isn’t in our minds, but instead a condition caused by a miserable virus, nor doing the worst, AKA suicide, due to pain, no matter on how times we did ponder on this, there’s always a good reason which makes us willing to keep alive. This pain might seems unbearable, but it’ll relieve someday, despite some occasional (and, I’d dare saying, mild while compared to first CHIKV bout, AKA that moment in which fever, headache, joint pain, joint swelling and sometimes rash – absent on my case – first appears & when u go to docs, and have yuh blood tested 2 many things & u as well as medical team go crazy with such puzzling symptoms) relapses, as that one I’m having rn. So, keep strong and have faith, ppl!!! We, the CHIKV community, r stronger than we might think. Just reminding y’all ❤ goodbye. That'll be last time I'll be visiting blog, and I did write this support message 2 y'all keep fighting & never give up due 2 that virus. May Lord bless y'all, as well. Fast recovery ppl 🙏🏼❤
    Yuh Brazilian friend,
    R

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  20. Karen Murphy

    My granddaughter was tested for Dengue a week after a trip from Jamaica this March. The infectious disease doctor stated that CHIK virus has to be done immediately for it to show up, so I do not believe that if you have blood tests taken 2 weeks or later after initial symptoms that CHIK will come back positive. That doesn’t mean that you don’t have it. My granddaughter’s Dengue blood test came back negative but both viruses have virtually all of the same symptoms, except that CHIK lasts longer. Dengue usually only lasts 2-4 weeks. It has been 6 weeks now for her and she is only 17. She has constant back, neck, and wrist pain. In the last few days she is now getting a sore throat and earaches which are related to the virus for some people. She was checked for throat and ear infections and she was fine. I feel so bad for her especially at her young age. The fatigue for her is incredible. She comes home from school and has to go to bed with her heating pad for a 2 hour nap before she does her homework. This is a devastating virus for sure!!

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  21. Dean Phelps

    My wife and I both got chikungunya virus 10 weeks ago on vacation in Malaysia. There was an outbreak in a state of Malaysia called Kedah while we were there. The mosquito that bit me must have been a tiny one. We also live in New England. I found your blog as I was searching for more information on ways to relieve the intense pain, swelling, and all the other multitude of strange symptoms that come with this. We’re both athletic, and it came as a surprise to be immobilized. We know several people in Malaysia who are dealing with it because of an outbreak there. The doctors there immediately knew what to say and do. Still reading all the posts here and want to say Thank You. I’ve tried just about everything for a cure. Some of the medicines given in other countries aren’t worth the risks.

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  22. Víctor Manuel quintero

    Soy de Medellín colombia, no hablo el inglés, pero les cuento que tuve chincungunya crónica, durante 6 meses, con problemas de artritis por chincungunya, uveitis, etc.
    Pero a los seis meses, me pico una abeja y me alivio desde el otro día ya podía trabajar y jamás me volvió a doler nada.

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  23. Geoff Counihan

    Thanks for your blog! It has been a great resource, I read it from my apartment in Boston as I was struggling through chikungunya I picked up in Peru 4 weeks ago. We shared a ton symptoms, but I feel like I got let off easy compared to what you went through. I’m just coming out of my “acute” phase and still have a fever that will punch up to 101.7 but with canadians (tylenol+codine) and ibprofen I can settle the headaches enough to be productive. Knock on wood, I’ve got only minor joint pain mainly in the knees and hands/wrists.

    This fever is such debilitating thing. I can’t say how little sleep I got or how completely drained, frustrated, and hurt I felt. It really does feel like a trip when you make it out alive.

    As for my symptoms:
    hard to find words – this happened to me as well. a coworker of mine called me out for ‘pausing’ mid-sentance a few times the week prior to when I came down with the true symptoms
    shivers – I had the same full body brutally scary shivers the first night as well and was completely off base when telling my girlfriend how cold the room was. I couldn’t even get water in the middle of the night because I’d convinced myself I’d freeze and begin shivering uncontrollably on the way to the bathroom, a room over.
    headaches/eyeaches – this was easily my worst symptom. I couldn’t move my eyes the majority of the 7 days without triggering a severe burst of headache. this hasn’t gone away but its much lighter than it had been. This seemed to be tied directly to how overheated my head felt. A few nights tossing and turning trying to sleep with a throbbing head I took showers where I turned the temp all the was down and gave my head an ice bath. Not sure how safe this is, but it felt sooooooo good and freed my head up for ~10 minutes before I would go back into headache mode.
    muscle soreness – this was bad too. when choosing to crank my neck or move my eyes I had to decide consciously which would hurt less.
    fatigue – I’ve never been more exhausted. I literally would plan out lifting my body from laying to sitting up and think which things I should reach to move closer etc.
    night sweats – this was disgusting and proved very uncomfortable. I woke up countless times in a pool of sweat from head to feet so much so that I end up moving and ‘wetting’ every spot I had to sleep in my apartment.
    joint inflamation – my ankles, knuckles, and knees were swollen the entire time. I couldn’t walk on my right foot one morning. But for the most part these were secondary to the fever and headaches for me.
    rashes – I got rashes on all parts that were swollen, and they became itchy for one night. But again this was secondary to the fever and the headaches.

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    1. Carl Walker

      carlw53
      3-2-18
      Below is my Chikungunya story that I placed in the chronic section in 2016. I didn’t know people were still talking after Chris got well and left.
      I am going on 3 years 5 months of PAIN. The doctors now refer to as Persistent arthralgia. See the link to study:
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5367425/
      I was infected in October and had my first symptoms on October 18, 2016. On December 1, 2016 I went to the Hospital on St. Croix , had blood draw and it was sent to the CDC. I tested positive for the Chikungunya Virus.
      I continued to work 12 to 14 hour days on a construction site. Worked for a year and half and took Chris’s advice and took time off. Now no job.
      I Toss and turn most of the night so I get little sleep. Wake up with Joint / bone/ muscle pain from head to toe. I have had a headache since I was infected, not a migraine or debilitating pain, just a light headache that I try to and can ignore most of the time.
      The Brain Fog comes and goes.But is mostly there, I am slower than i should be.
      The Backfire from exercise is still there. Please let me know if any one has a light exercise routine that works for them.
      I wish I could say it was getting better, but it is getting worse.
      I am researching again and will post any thing new or interesting for the treatment of the Persistent arthralgia.

      June 7, 2016 at 4:24 am
      Hello Chris hope you are feeling fine and you or your readers respond to my questions. I found your blog a few months ago.
      I was working on the Island of St Croix VI . I was on the Island for a year. On October 18, 2014 I had my first symptom of Chikungunya. I was in the local store and had a 12 pack of Coke cradled on my right forearm for about one and a half minutes. When I set it down on the counter my arm hurt. I thought “when di I turn into such a baby”, I need to get to the gym. The next day was Sunday and that is when I did my cooking for the week. I did laundry, cleaned the house and cooked. I felt great (kind of euphoric) , except my arm hurt from holding a 12 pack of Coke , what a big baby! The reason I am going over this is most people I talked to did not get 2 day notice or build up to the Virus.
      Monday Morning October 20, 2014 0300 I wake up with Joint/bone pain from head to toe. I had no clue that I would have the pain for over 19 months and still going strong.
      My back ground: I was 58 years old when I first got the Virus. I am 6’1” and weigh 208 at the time I was infected. I work for a Construction Co. as a Site Safety Manager doing remediation work. Prior to this position I worked Wind Farms. I climbed 300’ wind turbines. I was in good shape (for my age), worked 12-14 hour days. 6 sometimes 7 days a week. Now, like everyone else that is reading this I have no energy, I do not sleep, and have multiple symptoms, head ache’s, joint pain, bone pain, shoulders, elbows, wrists and feet are the worst. I know by reading this blog that a lot of you had it worse than me. I did not have much of a rash. It looked like I had sunburn for a couple days
      The only relief I have gotten was in April of 2015. I saw a Infectious Disease Specialist and was prescribed Prednisone. It helped for about 2.5 weeks and I gained 15 pounds. It was a Band-Aid, and not something that you can take forever, plus the symptoms came back slowly then with a vengeance. This was a Lesson Learned, always question the drugs that Doctors want you to take. THERE IS NO CURE FOR CHIKUNGUNYA. I have spoken to a Doctor with the Virgin Island Health Department. She is doing research on Chik V. I was able to talk to a Infectious Disease Specialist with the CDC. He wants me to see a Rheum matologist. Because the joint pain mimics RA. I
      2 WEEKS HAVE PAST
      6/6/16 (Nothing has changed)
      I really need feedback from as many people as possible that have had the symptoms for over 13 + months.
      1. Did you have a slow starting virus, 1.5 to 2 day slow buildup with a euphoric feeling?
      2. Have any of you tried OPC-3? It is a supplement I was told about. It is a powerful antioxidant. I have been taking it for 2.5 weeks. I have not noticed any change. I will continue to take it for 2 months to see if it helps. I will post. Please let me know if any of you have tried this. (DID NOT WORK)
      3. Exercise, I have tried to exercise but the Chik V fights back. If any of you have had this happen and fought through the pain and had a break through Please let me know.
      4. Please let me know what your exercise routine in detail if it works for you
      5. This is the worst part, do any of you have symptoms that include impaired memory and/or mental concentration, I call it brain fog. I cannot remember words when having a basic conversation. I do not remember how to do some basic construction procedures I did for 25+years.
      6. Is anyone feeling dizzy? I thought it was from flying, but it won’t go away. I have not traveled for a couple months. comes and goes but has bothered me for 6+ months (this was from something else)
      7. Anyone have chronic Fatigue. The joint and bone pain wake you up throughout the night? Have to nap during the day? Takes hours to complete daily tasks like paying bills, reading, having to re-read everything constantly, work reports take hours to complete that used to take half hour.
      8. I have talked to a Doctor with the Virgin Island Health Department. She gave my number to a researcher that is doing DNA testing to see if there are genetic markers to show why some people (15%) continue to have the Chik V while most get over it in 7-14 days. I am going to give her a sample. If you are interested I will check with her and post her information. (THIS WAS COMPLETED IN 2016)
      That is all for now, look forward to hearing from as many people as possible, because the Doctors Don’t Know Shit! About Chikunguyna.

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      1. Carl Walker

        Sorry, had the wrong date.I was infected in October and had my first symptoms on October 18, 2014. On December 1, 2014 I went to the Hospital on St. Croix , had blood draw and it was sent to the CDC. I tested positive for the Chikungunya Virus.

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  24. Tara Anderson

    Hi all, I chikungunya virus in August of 2013. I am currently 45 years old. Almost 5 years after Contracting the virus I still have pain in my hips and back. Has anyone had pain for such a prolonged amount of time? It’s better but it’s still there.
    I’ve also had reoccuring GI issues since getting the virus. Things in that area come to a head, and I’m getting tested tomorrow to see if I might have Crohn’s disease or colitis. I’m just wondering, has anyone else ever experienced extreme GI issues? Anyone with irritable bowel disease diagnosis? I read that IBD can be linked to a person’s immune system being impacted. So I’m wondering if there’s a connection. Of course, I think I blame Chikungunya on anything that goes wrong with me.

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    1. Wade And Kim Calder

      Hi Tara

      I contracted the virus in 2015 and still have GI issues and pain. It has been 3 years now. Things have improved this year – I don’t have the chronic fatigue and the GI issues have calmed down but they r still there. I was diagnosed with post viral IBS/post viral fatigue and I had chronic pain for more than 2 years.

      Hoping you feel better sometime soon

      Kim

      Sent from my iPhone

      >

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  25. Tara Anderson

    Thank you so much Kim. I think we chatted about all this a couple of years ago. Yeah, the pain is better but it comes and goes. I am sorry to hear you are still having issues. Take care and thank you for the information!

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  26. Kiki Dunson

    OMG! I am so glad you wrote this blog! I was thinking of doing so myself. I must have contracted Chikunguya in March 2018 in Miami. I live here and I know there are problems with mosquito borne illnesses. But I never knew about this one. For months I thought I was losing my mind. By the time I got all my tests for the chronic illnesses, the virus was “out of my system” for testing- so we had to deduce. But Oh My God. Seriously the acute phase of joint pain may be the worst pain I have ever experienced. And then the swelling for me after was unbearable. Also the stooped over feeling getting out of bed each day- with the not caring about life depression. I gained about 8 lbs of water weight. I had been feeling better for about 2 months after the 4 month mark. And I had also lost 6 lbs of the swelling. But then yesterday, 6 months after I felt the wrist pain again, and it was enough to make me spiral with worry. Today I’m OK, but if anyone can reassure me that this is just a fluke aftershock and not anything I have to worry about too much after the 6 month mark! I’m hoping everyone is feeling better, cause this thing is no joke.

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    1. Jessica Dailey

      I had very similar symptoms. I finally went to see a Rheumatologist. I have been taking Humira now for four years. The Chix caused me to get Psoriatic Arthritis. I may have always had it but it did not present itself. I am now symptom free thanks to Humira.

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      1. Carl Walker

        I have just had my 4 year anniversary on October 18, 2018. The Persistent arthralgia from the Chikungunya Virus is still affecting my Joints from head to toe, headache, and brain fog are still a problem. I was exercising 2 days a week for 9 weeks and have changed my diet. Have started a low fat plant based diet (mostly). The backfire from the exercise is brutal but I am trying to continue it.
        I have been taking Plaquenil since April of this year. I can not say it is helping yet, but I think it might be. I was told it could take 6 months (OR LONGER) before I feel any affect. I am at 7 months and hoping it will start to work.

        Good luck to all. Please keep posting any treatments that help you.

        CW

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  27. Kiki Dunson

    Yes! It totally seems now in retrospect that exercise actually made it worse.. When I started to swell, of course my first reaction was- I need to work out more! Bad idea. And in all honesty, my first weight gain assessment seems actually under the reality. I had a hard time coming to terms with it. Not to scare anyone, but I probably gained close to 15 lbs all said and done. I am now down 11. But exercise has been out of the question. I’ve had to just do portion control. I’m wondering when I will be able to work out again without flare-ups. I’m now over 9 mnths in.

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  28. Tanvi Shroff

    Hello everyone. First of all thank you Chris for writing such a detailed and descriptive blog. I’m sure it has helped many people suffering from the debilating and depressing disease. My prayers to all the healers. Hang in there, it’s going to be fine!

    I am in my fourth month, although I was never diagnosed with ChikV, my joint pain started after my viral passed. I went to rheumatologists to rule out any other conditions. The doctors said that it was a post viral arthropathy and it is similar to Chikv which has been spread in our State this Monsoon.

    Anyway, it’s the fourth month and I have joint pain rotating in each joint.. though not debilating, it keeps me occupied the entire day.

    Does anyone experience all of a sudden excessive clicking, cracking, snapping pops from their bones? I’ve been popping all the time and it’s really scary. Although the doctor has asked me not to pay attention, I want to know if there are others suffering like this as well.

    I’m going crazy with the constant new symptoms, sometimes my worry and imaginations make them worse. It’s to a level where I am no longer able to concerntrate on my daily life or be normal or happy in the best of the situations.

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    1. Kiki Dunson

      Tanvi- I sooo understand your anxiety. It seems like there is just so little information. And since it’s something that is chronic- but not debilitating, it’s hard for people to understand. But yes- it has permeated my life. Not just the joint pain but sensitivities to new things, weight gain, depression. I’m worried about the long term affects. I’m only almost 40. It’s scary to feel like you are already experiencing things that only older people deal with.

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  29. Kiki Dunson

    A few things:
    So for Tara from 2017- I hadn’t even thought about until I read it- I have had sciatica lately too- and never had before.I thought it was a bad mattress!
    Also, does anyone else feel like their lymph nodes are extra sensitive? For no reason? I’m still getting the same old inflammation (especially my knees) on planes and after exercise. But the lymph node thing seems weird. I know swollen lymph nodes goes hand in hand with rheumatoid arthritis. It seems that there isn’t much info on whether the long term affects of chikungunya can eventually turn into it. For anyone who contracted it years ago, do you think that it can happen? Starting to worry.Or maybe it’s just still in my system. Hasn’t been a year yet.

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    1. tara4ad

      For anour 2 years afyer getting the virus I had swollen lymph nodes in the groin area. Felt like tennis balls, eventually became marbles and now are gone. But stlll sore in that area. And yes I also have a lot of sciatica type pain, back and hips, it gets worse with exercise and I’m sure this point it’s rheumatoid arthritis. Since that can also be a symptom of ulcerative colitis, that’s what my doctors will blame it on, but everything started with chikungunya.

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  30. Kim calder

    Hi Tara

    I had lots of GI problems for the first three years after contracting Chikungunya. I was diagnosed with post viral IBS and I would also experience pain in my upper gut. It’s gone 4 years now and the GI symptoms are a lot better now. I still have bouts but it is a lot milder and much easier to manage.

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  31. Carl Walker

    Though I would check in to see if any one is still posting. Today is 10/18/2020, my 6 year anniversary of the Chikungunya Virus.
    My joint pain is the same, Neck, shoulders, elbows, rib cage, hands and feet. Still have brain fog. Still get backfire if I exercise or work in the yard. The only thing that has changed is the name, my doctor calls it Reactive Arthritis. Still taking Plaquenil / Hydroxychloroquine. I think it helps.
    Post if you have any news or treatments

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    1. JESSICA DAILEY

      I had the same thing and developed Psoriatic Arthritis after getting Chik. I take Humira every ten days and it has fixed all my symptoms. Go see a rhumetologist.

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      1. Carl Walker

        Thanks Jessica, I will ask my Rheumatologist about Humira. I was told I have REACTIVE ARTHRITIS. this means I have Arthritis systems and inflammation from the Chikungunya Virus, but I do not have Arthritis.
        Got this email today, very interesting. see the link:
        https://mail.google.com/mail/u/0/#inbox/FMfcgxwLsJvLLVWTttsGpbcMbwrjnqbb
        Next pandemic could be The discovery of a novel mosquito on Guantanamo Bay reveals how globalization is threatening to unleash the next pandemic.
        all my systems are the same…going on 7 years. Can’t imagine getting Covid19 also.
        Stay safe, good luck to all.

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  32. Bharat Sharma

    Hi Carl ,I am an MD I am 75 and my wife 70 we both suffered Chick V I was in pain for 6months and mildly for a year my wife took about 22 months to get closer to normal with we both have occasional flareups of pain we suffered during our sickness in different joints we tried all possible meds and consultations of specialist in the related field but no luck finally I found a cream with 16% Menthol in it I applied most of the time at night in morning pain was at lowest level measuring on 1 to 10 scale it was 2-3 and almost none after hour or two with simple activity like walking at our comfort level it’s in over the counter med call Biofreeze. -cool the pain
    Use cream only it has 16% Menthol. try it good luck

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