Fibromyalgia and CFS - Any other sufferers here?

Welcome to GN!
I have fibromyalgia and osteoarthritis. I have seen a few other mentions of it on other threads, so it's worth looking through them.
Always good to feel that you aren't alone, and maybe pick up some tips from others.

Hi Jen65 and welcome.
I've had ME/CFS for 31 years, also Fibro, Osteoarthritis, Osteoporosis, Under-active Thyroid, EPI (a pancreas condition), Asthma, Multiple Food Intolerances and a couple of other things.
How long have you been ill and how are you?

I dont but my daughter has fibro ,costochondritis,ehlers daner (sp)syndrome and a lot of other things.There are some great support groups on FB .Her last pain clinic appointment ended badly when the Doctor told her she's going to have to learn to live with the pain ,theres nothing he can do for her.
Thankfully she has anew and very good GP so we live in hope that he can find something to help .
Its a daily grind ,I hope you manage to get some decent help

Sparklefizz

Hi Jen65 and welcome.
I've had ME/CFS for 31 years, also Fibro, Osteoarthritis, Osteoporosis, Under-active Thyroid, EPI (a pancreas condition), Asthma, Multiple Food Intolerances and a couple of other things.
How long have you been ill and how are you?

I've had Fibro and CFS for 20 years now. I'm fine, going through a flare up at the moment so feeling very tired. I've been dozing on and off all day in my chair. Keeping positive though

My daughter was diagnosed with fibromyalgia & also severe reactions to foods. The Professor she was sent to see said there was no connection.
But seeing as the symptoms had escalated at the same time I wondered if there was a connection. She has EDS, a slight heart issue ( can't remember the name off hand)
Anyway by luck and chance she finally got a diagnosis of MCAD (Mast cell activation disorder) and found herself included in the human genome project . The outcome being her condition is now classified as Alpha Tryptasemia.
Her condition is managed with antihistamines & other meds.
For the bone pain she takes Sodium Cromoglycate. She still has to pace herself but life is a lot better than it was & with lock-down has worked from home which has been a big help.
I hope this info helps someone.
It's taken a while to post this as I feel were the lucky ones but don't want to sound braggy. Don't mean to diagnose either.

Thank you so much for this info,I'll pass it onto my daughter and she can take it to her GP ,fingers crossed it helps ,All information is much appreciated

Paddyanne
Doctor told her she's going to have to learn to live with the pain ,there's nothing he can do for her.

I'm afraid that is unfortunately so true. I have had Fibromyalgia for years and it's true to say the pain never goes away. It can be managed though so that it is not so debilitating.

I swear by a deep tissue massage every three weeks or so - can't manage that in lockdown so symptoms are getting worse.

I also think that listening to music helps. I'm not sure whether it is simply a distraction or whether the music actually alters the pain messages coming to and from the brain. Would love to find out.

Jen65

Sparklefizz

Hi Jen65 and welcome.
I've had ME/CFS for 31 years, also Fibro, Osteoarthritis, Osteoporosis, Under-active Thyroid, EPI (a pancreas condition), Asthma, Multiple Food Intolerances and a couple of other things.
How long have you been ill and how are you?

I've had Fibro and CFS for 20 years now. I'm fine, going through a flare up at the moment so feeling very tired. I've been dozing on and off all day in my chair. Keeping positive though

Hi Jen, Sorry to hear that you're going through a flare at the moment. I find stress is a big trigger and of course we are all stressed re Covid.

Hope you can get plenty of rest. Good news that you're feeling positive.... that's a definite plus

I have a friend with Fibromyalgia and she has B12 injections every 3 months which she says help a bit. Unfortunately she says the injections are very painful.

I have had CFS/ME and Fibromyalgia for over ten years. I was medically retired. It limits life a lot and the constant pain is hard to live with but I just make the best of the good days. Stress does make it worse. And it can be very unpredictable. Although I am a bit fed up with the Covid restrictions it has helped, as there is no pressure to be doing something or socialising. Not that I don't enjoy socialising but I find it very draining.

Just wondering if anyone on here with ME/CFS has had the Covid vaccine? If so, which one and did you have side effects?

I've been reading the ME website and it appears that no data exists yet relating to this specific group. It seems that a relapse is possible, but obviously not enough is known yet.

I don't fancy being bedridden again, but then I don't fancy Covid either!

I haven't had mine yet Squiffy. I'm 69 in NI expecting to wait another week or two. I have thought about this too and I know I will worry when I have it (what's new, I worry about everything? ). But as you say, could it be worse than Covid?