diagnosed with Fibromyalgia at the end of January 2020...
The best way to describe my symptoms is it feels like my body is destroying itself. ...
I have pain in my neck, hands, wrists, back, top of my hips, and my knees. ...
I have pain and tingling in my legs that feels like bugs are crawling under my skin....
rash all over both my cheeks, my chin and my forehead. ...
And I cry more than I smile anymore....
The most frustrating thing is I don’t feel like many people believe me...
Ever since everyone’s world got turned upside down by COVID-19, I feel like I have personally been in a constant flare...
Hi Jenn, I was dxed a 2 weeks later, Feb20, so I am in the same wake of CoV as you, my constant flare having started Oct19, but properly Jan20, having to stop working since then.
My take at trying to comfort you in your suffering is to offer alternate ways of seeing things, perhaps counselling could deepen that for you...:
My feeling living here was more one of comfort, that the whole world was getting out of synchronicity anyway, same as my whole body, somehow fitting. CoV helped me, cos of work changing, making my being off not as conspicuous, and sometimes getting appointments more easily (sometimes not), because people were scared of going to the docs (and I always just wore my surgical masks).
I do know this feeling of my body destroying itself, feverish-feelings etc. seeming auto-immune, my quick exhaustibility feeling like my body is full braking, thwarting itself, or has been in an accident, is a lead suit. So I was thinking of it being auto-immune (too), which is a doc-suspicion now, but won't help me that much. Now I've got most of the various pains down, I am reassured that it's better to see the pains as lots of small warning signs turning into one big one, saying: stop it, even my body saying: stop hurting me, hold your horses, go down into first gear. (Praps like nature is trying to tell us humans too.)
Helpful to me was dividing up each symptom into its parts: Your pain and your tingling could have different reasons, different ways of getting it down. The pain could be overexertion, the tingling could be nerves (doc) or in my case skin dryness, meaning less water contact.
If the rashes aren't lupus/autoimmune, it may be skin (atopical) and/or meds. I got severe rashes on my legs and 'burns' all over my body from COX2-inhibitors.
I do have and want to keep times where I am tired of it all, sad and depressed, usually when a new dx comes into play, and thinking, well 25 is enough, why does it have to be 30 diagnoses? (And why of all things cardiovascular?) And sometimes the pain (esp. in cold wind) gets so bad I have to cry (and I'm a guy ;-)). I think it's good not to fog this part over. But also to find resources for happiness and inner energy to get self-care up. I remember looking for comedy stuff that makes me laugh and being exasperated at not finding anything, not even things that used to make me roar. What helps me most laugh most is the antics which often come about playing table-tennis, even if it takes a lot of breaks and ache. But apart from that I'd use counselling to help coping, have done, just to be sure.
I was/am lucky in that my wife sees my pain better than I do, because she sees my stiffness (which doesn't hurt much tho, I keep trying to tell her) and sees me cry inside. It was her that sent me to 2 rheums too. But the experience is very strange when people who know me or don't say 'Oh, you look good today' or 'much better now', not realising that they can't see me a lot of the day, cos I have to be inside lying down.
It's again - out of synchronicity. But it's not just others I think, we ourselves sometimes don't believe it ourselves if we have a moment peace. I found a fibro-pic saying "my symptoms *get progressively worse*, me: oh thank god, I though I was faking this the whole time." Also the invisibility is our daily/hourly/minutely chore/job, finding the invisibly moving sweet spots for all our activities. This invisibility does feel a bit like an invisible enemy within, like you say "body destroying itself", but really it isn't the body, it is something unknown in the body. Again, our job is to uncover the invisibility as much as possible, listen to the undertones much more subtly and caring than ever before. I wouldn't prefer to have no legs or be dead, just so no-one can say there isn't anything. It being invisible and realizing that at least some of it is manageable gives me tons of hope. And if people don't accept me saying that I am in (sometimes excruciating) pain, and I'm not imagining that, it's not my job to convince them, apart from explaining a bit, it's my job to accept it and myself first. And then looking for people (incl. docs) who do believe me, who take it seriously.
Hope there's some ideas here for someone...