Fibromyalgia and the COVID-19 Lockdown: Feeling Alone with Illness
14 May 2020 • 2 comments
Vivichronique, a 39-year-old mother and member of the Carenity's French platform, has been living with fibromyalgia for 12 years. She wanted to share her story about the loneliness she has encountered in facing her illness during the COVID-19 lockdown.
How long have you had fibromyalgia? How do your "attacks" manifest themselves?
It was officially diagnosed 12 years ago. My "attacks " are becoming more and more severe and even excruciating. Sometimes I feel like I've been run over by a truck because the pain in my bones is so bad. I have an unpleasant feeling of being "tapped," as if I were bruised. Noise and light are sometimes unbearable for me. My body is also triggered into tendonitis. There is so much to say...
Does this require regular or even daily care?
I take many different medications every day: morphine, antidepressants, sleeping pills, anti-epileptics. I use a TENS device for pain relief as well. I've also tried some hypnosis exercises that I listen to at home after having tried it with my doctor. I am also seen at a pain centre.
Are you still receiving care during the lockdown? If not, why do you think that is?
No, I haven't received any care since the start of the lockdown. My pain centre was immediately mobilised, along with the doctors and medical staff to deal with the COVID-19 pandemic. The rehab centre as well.
I also haven't had any in-person session with my physiotherapist. We've been doing them by teleconsultation.
What kind of impact does not receiving this care have on your health?
I have regular flare-ups and tremendous insomnia. Plus, I currently have three children at home during this lockdown. I feel exhausted. My morale has taken a hit and I feel very lonely despite the fact that my husband is here to help me. Poor thing, he's helpless and can't do anything about my pain and flare-ups.
Are you able to make up for this care alone or with the help of your family and friends, by practicing self-rehabilitation for example or physical activity?
No, except for the TENS (pain relief device). My husband knows how to put it on because he used to come with for the training sessions. If I have unbearable pain, he puts a Versatis patch on me as well.
Are you worried about this lack of care? And if so, why?
In the long term yes, absolutely! It jeopardises my health, my morale, and amplifies my loneliness and isolation!
What piece(s) of advice would you give to patients in the same situation as you?
I would advise those who can still access their pain centre to actually call them. You shouldn't stay feeling this way in lockdown. In addition, I would also advise those who are lucky enough to have people they can trust to talk to, to do so. And finally, if possible, to take the time each day to sit down and rest, and above all not to feel guilty about doing so.
Many thanks to Vivichronique for sharing her story. And you, how are you doing these days? Have your symptoms evolved or changed during the lockdown?
Take care and stay home!