just like long covid

[rocklady73]

For years doctors have told us we just have to deal with all the problems of fibromyalgia which is jus t like long covid. It this what you are telling them?

It seems the news is all over long covid and not a word about fibro. HELP US PLEASE!

[redmaple-5]

I am watching the stories about long Covid with interest. The symptoms are so similar to Fibromyalgia. Hopefully a cure can be found that may benefit the millions affected by both illnesses. 🙏

[Jojo-Rees in reply to redmaple-5]

This would be so amazing, I don't care why they find a cure or even a way of living a 'normal' life with Fibromyalgia, I just care that they do it and maybe all the suffering and loss from Covid won't be worthless. So many lost and so many lives ruined forever and nothing gained from it would be a tragity, at least if something good can come from it then people won't feel so beat. (Hope my words make sense flair isn't great especially since having Covid to see the year in).

[bantam12]

The symptoms of long covid also exactly match thyroid diseases but no help for that either ☹️

[Hazel_Angelstar Administrator FMA UK Staff]

Many health conditions will leave sufferers with ongoing chronic health issues similar to fibro symptoms. Hopefully the interest and research into long covid will lead to answers which will help all of us

[Yassytina FMA UK Volunteer]

Yes agree a lot of people do not know what fibromaylia is when I say I have this condition, it still needs highlighting and more research as yet.

[Jojo-Rees in reply to Yassytina]

I'm finding more people know what it is now other than 6 years ago when diagnosed. I went to buy cbd oil yesterday and the person understood what I had and the main symptoms which felt great.

[desquinn Partner Volunteer FMAUK Trustee]

exactly or the same I would not agree with but similar. The body can only respond in a limited number of ways and if the body blows a fuse then this may be similar to how our body has reacted and gave us the present of fibro.

Lung damage and the type of heart issues are not the same as other conditions.

[softekcom in reply to desquinn]

No all Long Covid sufferers have lung or heart tissue damage. One of the fibromyalgia triggers listed on the NHS website (nhs.uk/conditions/fibromyal... is 'viral infection'. I developed what was diagnosed as fibro after a particularly bad infection.

[desquinn Partner Volunteer FMAUK Trustee in reply to softekcom]

There will be more people with fibromyalgia after covid is a memory and as a result of covid. That's a conclusion that is easy to come to as we believe fibro comes after the body experiences trauma of some kind so prevalence is bound to increase.

But what I was saying above was that there are people with long covid that would not be exactly the same as as those with fibro before covid or after but not having contracted covid. Therefore, long covid does not equal fibro or other conditions. It is something that follows the biological attack that covid has wrought on the body.

Will people benefit from money being spent on it, from research post covid..... most likely people with ME will and possibly people with fibro will. And hopefully the mental shift in perspective that these sort of symptoms that come as a result of covid are the way the body responds sometimes to stimuli and as a result the conditions like ME and fibro will be thought of with more compassion, legitimacy and with more funding as a result.

But to say they are different and best to understand the similarities, the differences and then realising how we can apply that knowledge. Conflation will not help us IMO.

[AllthatGlitters]

Yeah it is just long Covid and we don’t have any “fibromyalgia clinics” but they are going to be setting up long Covid clinics, which is great but it would also help us if there were more help out there for fibro suffers. I have never been sent to see a specialist about my fibromyalgia, given pills and that’s it x

[MaggieSylvie in reply to AllthatGlitters]

There are no specialists and no money available for developing a cure. Nobody is going to work for nothing. It will have to be fibromyalgia sufferers who do the research, and how many of us have the knowledge needed?

[rocklady73]

I was sent to a rheumatologist who said good news it isn't rheumatoid arthritis the bad news is it is Fibromyalgia and when I said what is that he said they don't know and that wat that. I've treated myself and done research for 25 years of pain and brain fog as well as the other things that go with it and I am TIRED

[veggiefan70 in reply to rocklady73]

Same here. I was diagnosed in 2006, and the only way I've gained info on the subject is with my own research. I rarely bother with seeing my GP now, unless there's something I think isn't Fibro related. Although that can be dismissed as Fibro, anyway. Even information on side effects of various meds has been from my own research and not the GP. The lack of support can leave anyone feeling defeated and exhausted. But... we must be an incredibly resilient bunch of people, the way we keep going against all the odds.

[Bruton]

I know many will not agree, but fibro can develop from being ill. New symptoms are always being added to the long list of fibro symptoms. It would never surprise me that in time the drs will say that these people have developed fibro... who knows they might start listening and want to help us

[Carlt]

Doctors can only work with the tools given to them.

When my GP and consultant had exhausted all the pain relief options available they were not dismissive when they told me what I'd concluded a long time before...until something new is developed I am just going to have to live with it.

Sure enough every time anything new crops up (or something old they may have missed) they call me, though this has tailed off since covid.

I know I'm one of thousands of patients on a big practice's books but I also know that my condition is still being researched...even if it isn't tabloid news.

[Ballroomdiva in reply to Carlt]

Nice to hear someone say something positive about GPs /Doctors. for a change. so many on here don’t., not just on here but on the Thyroid side too. Of course there are doctors that aren’t very good and don’t care, but you’re right they can only give you the latest info or help WHEN AND IF THEY GET IT. .. yes COVID is getting the help but they can DO something for COVID because it’s a known entity. ( well the flu is and by that extension COVID )

[sukie67]

I’ve got Long Covid, on top of Fibro. Just when I thought my Fibro couldn’t get much worse! 🤦🏻‍♀️

[Reggie28 in reply to sukie67]

I to have long covid and fybro, my life is now totally different to what it was 12 months ago, I'm now not able to work due to it all.

[sukie67 in reply to Reggie28]

I’m sorry to hear this. I’ve been off work since October. I’m on a phased return to work. On my days off, all I do is sleep. It’s very scary. I hope that, with time, you will start to feel more ‘normal’ ..... take care.

[Reggie28 in reply to sukie67]

Thank you, you also take care having fybro wasn't nice but covid on top, well you know how that feels.

[Healthychic in reply to sukie67]

OMG that is AWFUL blessings to You!

[snowyday2020]

very interesting

[CrystalGecko76]

Must admit when I read about long covid and the government setting up stuff to help those who suffer I did get angry...it is basically fibromyalgia! Yet we can't get help or even pain relief (I was sent on exercise programs which made me so sick and poorly and I mean shaking in bed and vomiting poorly for two or three days after one session and I was supposed to do that 3 times a week!)

[Carlt in reply to CrystalGecko76]

The fault doesn't lie with the doctors though. Exercise works for some folk, medicine for others.Pain meds make me react in the same way as you reacted to exercise but, until we try it, we don't know how we'll react.

The only thing that helps me is my TENS machine but I know folk who can't bear to use one.

One of the advantages of the attention long covid is getting is that there may well be developments for all chronic pain conditions.

Also it is worth bearing in mind that if Fibromyalgia ever becomes the poster boy of illnesses there will be folk suffering from less popular conditions saying "How come they're getting all the attention?"

[Tmatt]

I am a newbie on here. I was diagnosed with hypothyroidism just over a year ago, despite a fantastic doctor who started me on meds and ordered every test known to man to rule other illnesses out, I wasn't feeling any better.

I have seen many different doctors and had many different tests and scans over the last 12 months, i feel very fortunate to have been seen during covid, but every test/scan came back clear, which i felt relieved about in one sense but frustrated at not knowing why i felt the way i felt.

Last month I was diagnosed with Fibro. the rheumatologist was very good and thorough to rule everything else out before diagnosing fibro. When she gave me all the information and list of symptoms it all started to make sense. At one time or another i had suffered everyone of the long list of symptoms, many of which i still have.

The only one that i am really struggling with is my throat/neck. i don't know if its my thyroid, fibro or both but my neck feels tight, a pulling feeling, goes into my jaw and ears. Its painful and strange feelings, it is really hard to describe. I am also having lots of sinus problems.

I take warfarin for repeated DVT's over the years and levothyroxine. I am refusing other medications at the moment because i cant deal with any side affects on top of what i am already feeling. i do take paracetamol and found heat helps the pain and i go walking every day. Even if its just for 10 minutes.

Sorry to have taken up so much time but i have felt relieved to know i am not alone and to finish with 2 last comments (promise) firstly there are some good docs out there i guess you should just keep changing until you find one and the 2nd is there has been huge studies into long covid and the connection with hypothyroidism and FM.

Thank you for listening