Fibromyalgia

[Hodgson57]

Hi everyone well got letter through from reumatolgy he is now saying have fibromyalgia maybe that's why I am getting body tremors that's on top of every thing else feel like no body really know what I have there moan over x

[MaryF]

Please be aware that Fibro often turns out to be untreated Thyroid problems, the TSH test is c*** and lots of people fall through the net Thyroid UK is the best source of information. MaryF

[nicmaylee]

Hi! It sucks that you feel so frustrated, I understand the struggle to get diagnosed. I knew something was wrong for a couple of years before I was forced to go to the docs (I woke up half bald so finally had to go!). Initially I was diagnosed with lupus-like symptoms, on my next rheumy appointment I was tested for sjogrens- have the worst case the hospital have seen when testing my eyes! So it was then mixed connective tissue disease with lupoid symptoms as I already had diagnosed coeliac disease. Next appointment I was diagnosed with fibro on top, thankfully the pregabalin does help. Then after a sunny summer last year my lupus symptoms upped a gear so now I'm confirmed as full lupus, coeliac, sjogrens & fibro! It's a real pain never knowing what your next appointment will diagnose and never being sure how well you'll be feeling day to day. I manage with a full time job and try to keep a bit of a social life going (it's extremely sparse for someone in their 20's!) and just tried to adjust to my new 'normal' way of feeling so then I can tell the difference of a flair-up. A name helps explain things a little better but it doesn't make the pain stop or make people really understand what you're dealing with. I hope you find your way to cope with things, with or without a 100% diagnosis. Good luck. Nic.

[Hidden]

Hi there. I think you will find that an awful lot of us who have an auto-immune problem at some point find Fibromyalgia pop up in our diagnosis. If, like me, all of the blood tests are always borderline and fairly useless in helping form an accurate diagnosis then Fibro seems to be a standard fallback position for the docs. Good luck and Best Wishes. Stephen.

[Renu]

I used to get a lot of uncontrollable body tremors on left side. Was checked out by a Neurologist who said it was not related to lupus itself but was functional; in other words down to stress. I wasn't entirely convinced to begin with. However, I now get them very occasionally. Perhaps they are right, I don't know. Having to live with lupus day in day out is extremely stressful, so I could not rule out this possibility. The tremor was a release mechanism I was told. Don't know if this post will help you with your situation, but I thought I would share it with you. I now go swimming regularly, and I think it helps to work out bodily stresses and keep active and mobile. Good luck with everything. We have to remember that both our body and mind are affected due to our chronic illness. As I have more bad days than good, it is not surprising that stress is bursting to present itself in some form or another!

Renu xx

[louiseamos]

Hi.Hodgson 57.. That's what the 2 and rumotoligist said I had..didn't believe her..saw a 3 rd in Newcastle.. I've undiffrent connective disease.probable lupus.+/- antibphosphlid antibody syndrome????? Yep...?? I have no clue...I am in well..was to have my 2 and back op.my own gp said think my backs all in with this.I've osteoarthritis. So don't give up...I started when 22 ...unwell on off.now 39////// now unwell to work at mo... I'veno clue wwhat's wrong with me.arrrrrr x bless good luck

[Hodgson57]

Thanks to everyone it does help when you listen to what other people go through and you know your not on your own it just so frustrating at times thanks again xx

[notoverthehill]

i have this and recently asked for advice on getting shoes that i could walk and drive with , with some measure of comfort and safety.I have been subscribed Pregabalin and the help a little

Jean