Testimonial: "More than two months later, I'm still not completely recovered!"
15 Jun 2020 • 3 comments
Bybyche, a member of Carenity France living with ankylosing spondylitis, wanted to share her experience on being infected with COVID-19. She tells us how she went through the ordeal and how the virus contributed to the aggravation of her ankylosing spondylitis.
Hello Bybyche, you have ankylosing spondylitis and are treated with NSAIDs (Non-Steroidal Anti-Inflammatory Drugs), did your doctor advise you to stop taking them at the start of the Coronavirus pandemic? If so, what difference did this make to your health status related to AS?
I was having an inflammatory flare-up 15 days before the start of the lockdown and was therefore on NSAIDs.
The weekend before the lockdown, given the information in the news in France about taking anti-inflammatory drugs and not having been able to reach my doctor, I stopped taking them out of precaution. Later my doctor told me that I could have gone through with the treatment but that it had been wise to do so because I was infected with COVID-19 very soon after I stopped.
Sometime later, you were infected with COVID-19. What were the first symptoms? What made you think it was a Coronavirus infection?
I went into lockdown on March 18. The first symptoms appeared 3 days after lockdown began. I noticed a much more intense flare-up than usual with excruciating muscle pain, really horrible. I then thought it was a relapse of my ankylosing spondylitis attack since I had stopped the NSAIDs. I didn't have any suspicion of coronavirus infection.
I then had a kind of burning rhinitis and then a fever.
I became aware of cases of infection among my colleagues. That's the main thing that tipped me off. Yet we complied with all the barrier measures and recommendations.
Were you tested for Coronavirus?
My doctor immediately thought of COVID-19. However, I was not given a PCR test (a diagnostic test) because there was no screening site or test available. I was not treated at that time. Luckily, I did not need to be hospitalised.
Later, at the end of April, more than a month after the onset of symptoms, I had a serology test (an antibody test not reimbursed at that time at 54€) which showed the presence of IgG and IgM antibodies.
I treated myself only with paracetamol with codeine to relieve joint and muscle pain and to lower my temperature.
How long did you feel the COVID-19 symptoms? How did the illness progress?
The joint and muscle pains persisted throughout. Fever lasted for two days on two occasions. I had diarrhoea and intestinal pain for two weeks. Migraines and shortness of breath lasted 5 weeks in total. I lost my voice 3 weeks after the onset of the symptoms and this lasted for a month.
I still have neither taste nor smell (anosmia and agnosia). And fatigue is still present.
The symptoms have varied considerably and have relapsed. For example, after the first 2 weeks of illness, I experienced a lull of 2 days, then a rather severe relapse.
Do you have a special protocol in place for your usual treatments for ankylosing spondylitis?
No, none at all. Aside from discontinuing my NSAIDs.
However, I have been fortunate enough to be able to continue my remote physiotherapy sessions twice a week. My physiotherapist also gave me a list of exercises to do at home.
What are the predominant symptoms of ankylosing spondylitis? Did they intensify during this period?
The most significant symptoms are joint pain, especially in the lower back, hips, heels and neck. These pains intensified during this period, especially when I stopped my anti-inflammatory treatment. This resulted in an alternating sciatica causing pain in both buttocks and extending from the legs to the heels.
Recently, my doctor felt that I could reintroduce NSAIDs since I was still shielding and therefore away from potential sources of COVID-19 exposure.
What barrier gestures have you put in place at home to prevent transmission to family members?
We disinfect our hands at the front door and undress in the garage and then wash our hands with soap this time, before going upstairs.
We disinfect door handles, light switches and toilets after each visit. We air the rooms of our house for a considerable period of time every day.
We do not wear masks inside. This is mainly due to the fact that there were no masks available for a long time in France.
How are you feeling today? Do you feel completely recovered?
I still have intense pain, I'm exhausted and tired. I'm out of breath when I walk. I don't feel recovered at all.
Many thanks to Bybyche for agreeing to share her story on Carenity.
What about you, did you have to deal with the coronavirus? What were your first symptoms?
Feel free to share your experience with the virus in the comments, we are here to support one another!