Chikungunya – A Personal Horror Story
Monica Tindall
Earlier in August this year, within 12 hours of each other, both hubby and I became very unwell. We had fever, chills, a rash that covered our entire bodies, every lymph node swelled (I didn’t realise we had so many!), we had severe, disabling pain in every joint and muscle weakness.
We were so crippled from the pain that we were near bedridden for over a week. We were too unwell even to consider leaving the house (unless someone carried us out in an ambulance). Instead, we consulted a doctor online. He suspected dengue. He told us to get bed rest, stay hydrated, couriered us pain medication and told us to get blood tests ASAP.
Mosquito-borne Virus
The following morning we went to our local clinic for a blood test, where the doctor again told us we had dengue. She said it was too early for it to show up in blood tests, but given all of the symptoms, low platelet levels, and that we’d reported an obscene number of mosquitoes in our condo, it was the most likely diagnosis. They also carried out a Covid-19 test – negative as well.
We continued with the daily platelet tests. They kept dropping, and then finally, on the seventh day, they began to rise again. At this time, my rash was severe, covering my entire body. Another dengue test came back negative, as did tests for chikungunya, rubella and measles. The doctors said it could be a new strain of dengue or any number of unidentified viruses. No matter, there are no cures for viruses other than just treating the symptoms – rest, hydration and pain medication. On the ninth day, we were able to waddle around, the rash went away, the fever and chills diminished, but the joint pain remained.
Severe, Disabling Joint Pain
For me, the joint pain and muscle weakness continued to be crippling. I was unable to kneel on the floor and get up again without assistance. I couldn’t open bottles, turn doorknobs, wash my own hair or dress completely, and my body aches prevented sleep. The pain, inflammation and stiffness were generally worse in the morning, easing later in the day with gentle movement. I had gone from intense daily exercise – kickboxing, yoga, HIIT training and Latin dance, to not being able to lift my shoulder high enough to brush my hair.
Hubby had less joint pain, but the virus has affected his heart. He felt constant pressure, shortness of breath, and discomfort in the chest in general. Hubby (who generally avoids doctors and hospitals) visited the emergency room on several occasions, worried about what was happening. Doctors confirmed that his heart had been affected by a virus and was inflamed. They gave some medication for the inflammation but said it should self-resolve in a few weeks.
By this time, the feeling of being disabled started taking its toll mentally. Exercise is a huge stress relief for us both. Not being independent, being sorely reduced in the number of activities we could carry out daily, and having no release through exercise left us in tears on more than one occasion. At work and with friends, I tried putting on a happy face and pushing through, but inside, I wondered if this would affect the rest of my life (I know, drama queen).
Chikungunya
Six weeks on and with our daily activities still severely limited, I returned to the doctor and this time tested positive for chikungunya. Apparently, tests in the early stages of infection can be inconsistent. It’s generally at three to five weeks that IgM antibody levels are at their highest.
Although, like most viruses, there is little that can be done other than rest, drinks lots of fluids and take medication for the pain, it was a relief to have a name for what we had. Now we had something to work with, documented research to investigate, and experiences from others to offer comfort.
What is Chikungunya?
Chikungunya is a viral infection transmitted through the bite of an infected mosquito. Similar to dengue, the Aedes aegypti and Aedes albopictus (the mossies with white dots on their legs) are the primary carriers.
Chikungunya Cases in Malaysia
The most recent outbreak I found reported in the news in Malaysia was March 2021. However, recently, we’ve also seen posters up around the Ampang Hilir area warning of the dangers of chikungunya, and our condo was visited by the Ministry of Health this week. They checked for possible breeding spots for mosquitoes (both in common areas and inside our apartment) and fogged the entire property. The Ministry of Health’s most recent report seems (translated from Bahasa) to indicate that they have recorded 968 cases this year.
Chikungunya Symptoms
The main symptoms of chikungunya are fever and joint pain. They can also be accompanied by headache, muscle pain, rash and inflammation around the joints. Less common, conjunctivitis, nausea and vomiting may also be present. The name means “to walk bent” due to the posture often caused by severe joint pain. A systematic review of clinical findings also indicates cardiovascular compromise, which explains hubby’s chest concerns. The reviewers found cardiovascular manifestations such as hypotension, myocarditis, murmurs, heart failure and more, common.
Treatment & Length of Illness
Medical News Today reports that “The virus is rarely fatal, but the symptoms can be severe and disabling. Most patients recover from the fever within a week, but the joint pain has been known to persist for months. Even after 1 year, 20 per cent of patients report recurring joint pain. There are no specific drugs to treat chikungunya; doctors simply recommend rest and plenty of fluids.”
In two large-scale studies in the Americas, 25% of patients reported joint pain 20 months post-infection. A study carried out in Southern Thailand says 1.7% of cases continued to report persistent arthralgia five years after the disease onset. Additionally, several studies found depression and anxiety symptoms higher amongst those with post-chikungunya chronic disease.
Prevention
The only prevention is not to get bitten by virus-carrying mosquitoes. In and around your home, watch for and remove any still water mosquitoes breed in (EG garden pots, blocked drains etc.). Get mosquito netting for your home. Cover up and use repellent when in areas prone to mossies.
Quality of Life Seven Weeks On
It’s now been seven weeks since the onset of symptoms. My days of kickboxing and yoga seem like a distant memory. I wake daily with joint stiffness, pain and muscle weakness. I do light stretches and mobility exercises in bed before putting my feet on the ground, but it takes great determination to get moving with the pain. I force myself to stretch and do very slow movements. Lifting my shoulders above my head now takes the same effort it used to take to do burpees or push-ups. I feel stress hormone from the action shooting up my body, but I know I will lose mobility if I don’t work through it.
General pain medication such as Paracetamol does not work for me. I have had some success with Prednisolone and Celebrex, but neither of those can be taken for extended periods. I already lead a very healthy lifestyle eating loads of whole foods, a mostly plant-based diet, drink lots of water, value rest and early bedtime, don’t smoke, and I’ve barely had a sip of wine in two months. I’m trying homeopathic remedies to reduce inflammation, such as ginger and turmeric shots, and am doing gentle movement and stretching morning, noon, and night.
Once I’m moving, I can hobble quite quickly. I embarrassingly look like I’m 90, going downstairs sideways and taking a full minute to get into or out of a car. I’m trying to stay positive, but it’s challenging. The pain, disturbed sleep, and sense of loss of my previous rich, active, movement-filled lifestyle is taking a toll. I’m trying to intellectualise it and find some opportunity in the experience – a lesson for future-proofing our retirement strategy, gaining compassion for those with arthritis or restricted movement.
It’s not working, so the best I can do is raise awareness and hopefully prevent you from being bitten by a virus-carrying mosquito too.
References
Overview
https://www.scielo.br/j/mioc/a/JqRqyjsdtdVJrYSPwcrs9Tz/?lang=en# Excellent review of research.
https://www.medicalnewstoday.com/articles/306828
https://www.cdc.gov/chikungunya/index.html
https://www.who.int/news-room/fact-sheets/detail/chikungunya
https://www.iamat.org/country/malaysia/risk/chikungunya
Chikungunya Cases in Malaysia
https://www.moh.gov.my/index.php/database_stores/store_view/17
Long Term Effects
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5405794/
https://www.pasteur.fr/en/medical-center/disease-sheets/chikungunya-0
https://www.sciencedaily.com/releases/2019/08/190829150818.htm
https://www.amjmed.com/article/S0002-9343(19)30911-8/fulltext
Mental Health
https://academic.oup.com/ofid/article/5/suppl_1/S161/5206994
https://ard.bmj.com/content/76/Suppl_2/989.3
https://www.ijidonline.com/article/S1201-9712(18)34341-8/fulltext
Treatment
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6771335/
Have you heard of or had any experience with chikungunya? I’d appreciate reading your stories in the comment box below.
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Oh dear! Thank God both of you are all right now.
I think I had it many years ago, before I retired, and I had quite severe symptoms. I remember the body pain, the joints especially and the lack of strength to do anything and though it lasted only for a few days, I was weak for quite a long time before I fully recovered, back to my usual self.
Gotta be very very careful with those mosquitoes!
They sure are nasty little creatures – so much damage from such a tiny thing.
Gosh…this is just scary…I am glad that you are doing better now.
We’re still taking it day by day.
I am glad to know that you and your hubby are now cleared of the virus. It must have been scary to have such severe symptoms especially during this pandemic. My area is also infested with dengue mosquitoes and they had a team to spray the area and did house to house checking. Thank you for sharing your experience and also the useful information. Take care, be strengthened and get well soon.
Thanks. There’s a big construction site next door. I think a lot of mossies come from there.
I am so sorry to hear about this and I hope you both are doing well now.
You can grow some lemongrass on your balcony, it contains citronella which can repel mosquitoes naturally. On top of that, you can use the lemongrass in your cooking.
Great minds… we have citronella growing in our home. Maybe it’s time we grow some more.
Hi Monica, so sorry to hear you’ve been afflicted by this horrible virus. I’ve had dengue before and had joint and body aches as well as exhaustion which took months to recover. I hope your path to recovery is faster.
Glad to hear you are well again. I had dengue maybe eight years ago now. The two are similar but the joint pain is distinct with chiku. I’d say with dengue it took me at least a year, possibly 18 months, to fully recover.
Oh Monica, I just read this and how awful. I am hoping for a full recovery for you and Caning. I can’t imagine you not being able to exercise…you are both always so active. And lack of sleep is so debilitating. Stay positive, surely your health will return. Keeping you in our thoughts.
Yes, the exercise restrictions are doing our heads in. Still taking it day by day. Thanks for your kind words.
Oh dear… Hope you are both feeling better as the days go by. Yes I heard the joint pains will take a while but do what you are doing to maintain mobility. Hugs to both of you and wish you a speedy recovery
Thanks, Aileen. It’s hard to get started some days, but I’m always grateful afterwards when I’ve forced myself to move.
I am so sorry to hear that you have both been unwell but glad that you have a diagnosis.
I hope you both recover fully soon xx
Thanks for your well wishes.
Gosh .. the photo you used is outside where I live . I came down on Aug 6 and discovered I got it a month later . It’s been 2 months and I’m still not doing well in my joints
Li from RGB sent me your link after I told her about it this morning
Thanks for your input
Thanks for reaching out, Zarul. A couple more people in my building have it too. We’ve just passed week 8 and I’m still having trouble with my joints. Ups and downs. I had two pretty good days this week but also some when I was crying with the pain and it took every ounce of will to even stand. Have you found anything that helped with the pain?
It’s been the same here with me . Also into week 8
I’m on my way to see a blood specialist this afternoon
Please let me know how that goes.
I’m on 90mg of Arcoxia for the next 10 days . I’ve been avoiding this, I didn’t want to take this route but after 2 months and dealing with the arthritis in my joints ( I already have polio in my legs ) I decided to take the prescription
I have had relief since , fully aware that’s the Arcoxia is working but worried about long term dependency
Thanks for sharing. I’ve already taken Prednisolone and Celebrex for several weeks. I’m no longer taking them because of the long term effects but I am back to having so much pain. I don’t know what to do next. Possibly physiotherapy.
I’m thinking the same . I’ve been running a movement studio here for the last six years, OurBodySpace . We have yoga and pilates teachers . My partner is a body worker , she’s away at the moment . It’s been quiet with the lockdowns
Otherwise , just like you , I need to figure this recovery our properly too
Here’s my number if you’d like to connect 012 3624894
Thanks, I’ve put you in my contacts. 🙂
By the way , it was our pharmacist Jessica in Hock Choon who advised I go and get tested because she also came down with it around the same time too
From what I’m hearing, it seems to be undertested. I’ve got lots of messages from people talking about lingering joint pain after an initial week or so of fever, rash, and body aches. They were tested for dengue but not chiku.
Hi Monica, thanks for posting this article with all the links, which have answered so many questions I had after falling ill with this virus 2 weeks ago and having an identical experience.
I was diagnosed by Prince court and they have informed the authorities, however I just wanted to post here that there was Chikungunya in Bukit Damansara as of 18-OCT-2021. 3 people in my household were infected.
Thanks for sharing your story, Christopher. Kindly keep me updated on your progress and any successful treatments. We’re into our 11th week now. Hubby is slowly getting back on track but I am not able to life even a semi-normal life wothout medication. I am slowly reducing the dose but the pain is still there. Unfortunately, it’s a raw statistic for females over 40.
Hi Monica, at 2 weeks I have only just got through the active viral stage and am a bit shell shocked to be honest.
I have been given Celebrex 200mg. It is working, but I am still waddling (and like you say – walking up stairs sideways). The pain is centered in my calves, ankles, feet, wrists and hands.
Do you have any recommendations for specialists in KL with actual experience with this disease? The doctors I have seen so far are aware of it, but I get the feeling that they haven’t seen many cases before.
I have searched for specialists in KL but have not yet been able to find one. So far, I’ve seen a GP, an endocrinologist (I have an autoimmune disease so need to make sure medication is okay), and a rheumatologist. All have recommended the same – corticosteroids and Celebrex only if there is breakthrough pain. I’ve also searched the medical journals for treatment studies and they pretty much say the same.