fibro and covid

[Belleross]

hi, I had Covid over Christmas 2021 (15 months ago) since then I constantly feel I’m in one long flare of relentless fatigue and pain whereas before I had times of feeling ‘better’. Anyone else noticed this since having covid? Thanks

[Dizzytwo Moderator]

Hi there, maybe its the continuing effects of long Covid rather than fibro. Or may be a bit of both. Maybe a word with your GP may be helpful. I hope you feel better soon xx

Momo

[DavidCB]

that’s exactly what I’m like !

Just been referred by gp to long covid clinic (he wasn't sure it wasn't 'just fibromyalgia' but I pushed that I've been very differnt since then, and the covid drug trial- hoping it will help - it was on the long covid bbcradio 4 podcast.

[Belleross in reply to DavidCB]

thank you, I’ll see GP

[Judithdalston in reply to DavidCB]

I’ve had long covid for nearly 3 years, with last positive covid result over 18 months ago …so accumulative problems…when asked about LC symptoms I have said to medics my fibromyalgia is probably 25-50% worse ie no real relief from all over pain ( except long hot bath), worse exhaustion/fatigue, more fibro fog etc, but with breathlessness, and raised BP and HR. Been thru the LC clinic here which was ‘soft’ breathing exercises, without benefit. What covid drug are you to trial?

[Judithdalston]

see my answer below to DavidCD…I have found LC over nearly 3 years has made all fibro symptoms worse with little or no relief, and Gps who, to quote, are ‘not interested in LC’ so have had piecemeal referrals that end up as dead ends (various breathing/respiratory phone appointments/clinics, 2 chest X-rays, echocardiogram, 2 ECGs). Hope you get better service!

[EarthSitter1]

I’ve been the same since having Covid last October, I’ve mentioned it to the doctor but he wasn’t interested, but I know the fatigue in particular has been a lot worse since Covid ☹️

[DavidCB]

yes these all resonate with me, my flares used to last 1-weeks if stressed or unwell and now it’s constantly worse than any flare was before, and the new flares are 75% worse than that, and all since covid which is why I pushed they can't just blame fibro as fibro does normally get worse suddenly like that and flare go down again etc, the dr was originally 50/50 referring me but I pushed my point and asked what other options were; I also said refer me and they will tell me if I'm not suitable; I have to provide heart rate and SP02 reads when resting as well as before and after any exercise/ activity to make me breathless etc over 14 days for them to review.

Just had a 50 min MRI scan on the torso organs and hopefully will hear somthing in a few weeks time. Thankfully I've not had the soft breathing stuff and was kinda dreading that I'm already trying those kind of things and some exercises if I can to help but after 15th months i wasnt improving, though when I had covid I had pneumonia and the next few weeks struggled to do stairs - well for months properly, even now I notice though. See what happens.

[south1966]

Hi Belleros😊I'm sorry to read that you have been in an ongoing flare since you caught covid😫. I caught covid twice in 2020 and like you my fibromyalgia is now unmanageable, no treatment whether its perscrption meds or alternative therapies eases my pain😫I've been under the long covid clinic and the specialist explained that the 2 conditions are working in synergy with each other, they are unable to offer any treatment and my Drs just at a loss on what to do with me🤔, I've been off sick over 12 months as no 2 days are the same it's either ongoing pain that renders me bed bound or the long covid symptoms, I'm sure to finish my civil service career next month, I'm devestated as I don't know how I'll manage financially and if I'll ever work again. All I can suggested is that you take each day as it comes no matter how hard that may be. I have found this group to be a massive support as family and friends don't understand. Be gentle and kind to yourself, are you under the long covid service? If not I'd get your GP to refer you.

Take care and gentle hugs xxx