Any help would be appreciated

I am new to this site although have been reading some of your posts over the last week or so and would be very grateful for some advice as I don't really know what fibromyalgia is...I will try to make this as short as possible.

A couple of years ago I was diagnosed with hashimoto's and sent to a rheumy because I had a high titre positive ANA, anti Ro antibodies and anti-adrenal antibodies. First I was diagnosed with primary sjorgrens syndrome...then with an overlap sjorgrens/lupus.

I did all of this privately because, although I wasn't feeling very well, my initial appointment was made because my face was always red and I didn't want to waste my very busy local GPs time with vanity. Now he (local GP) knows all about it and manages my medicine...however, he has never referred me to a rheumy, and I always feel that he doesn't believe the original diagnosis. I went to see him last week because I have been feeling so tired that I can't function for the last 4/5 weeks, burning sore eyes and my legs feel as if they have constant toothache that my strong headache painkillers don't get rid of it.

I have lot of sjorgrens/lupus symptoms...butterfly rash, sensitive to sun, gritty and really painful eyes, brain fog...so much that I can't remember them all now. But, in the last few weeks my leg pains, knee/hip joints, fatigue that is all consuming is constant. My GP asked if I'd ever thought about Fybro or something called Behcets disease...he'd speak to my old rheumy, and never did anything about it.

Actually, I don't know what to do next. Every day is a day I want to be over, so that I can be asleep (if one can ever sleep). I know that I match the autoimmune symptoms..but perhaps this is something else, or it has been wrongly diagnosed. I just really need some advice on what to do that will help. Could this be fibromyalgia..and is there something that can help the ache.

I'd be very grateful for any advice.

Thank you.

4 Replies

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  • Hi puffyface

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of your suffering and struggling my friend, and many medical conditions such as Behçet's disease do have some similar symptoms as Fibro. I have pasted you an excerpt form the *NHS Choices cache on this issue:

    *Behçet's disease, or Behçet's syndrome, is a rare and poorly understood condition that results in inflammation of the blood vessels and tissues.

    Confirming a diagnosis of Behçet's disease can be difficult because the symptoms are so wide-ranging and general (they can be shared with a number of other conditions).

    I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Hi Puffyface, So sorry you are having a time of it. A friend of a friend has Sjorgrens,Lupus, and also Fibromyalgia which seem to go together at times. Another friend has lupus but has had a hip and shoulder replacement due to being on high doses of steroids over the years which if I am correct in saying can thin the bones. She has been particularly bad since a young girl with Lupus and always seemed to have a permanent limp. Your Dr should really be trying to find out if you definately have Fibro or not and I can only advise that you go back or see another Dr. I hope you get some ease soon and there are lots of lovely people belonging to our Fibro family who will be able to advise and help more than myself but a big Welcome!!! x

  • Afternoon Puffyface welcome to our very friendly Fibro forum and know you will get lots of help and advice we aren't doctors so can only say how we're feeling etc.

    I've had spondylitis since 1986 - HBP Asthma 1990's - which are now controlled- last June diagnosed with Fibro then in December hyperthroid - and studying Fibro and thyroid probs they mimic each other in quite a few symptoms - so you probably do have Fibro running alongside your Hypothyroidism

    What I would do is seek a second opinion from another GP as you can't carry on like this - no sleep = more pain and more stress and so the vicious circle goes on.

    Take Care hope this may have helped you. 😀😀😀

  • Thank you all. It makes it all easier to cope with sometimes to know that there are people who understand.

    I would love to seek a second opinion, but don't feel that I can. This particular GP, whilst not helping much with getting me to the right people, is providing my thyroid medicine (T3) which is very expensive (about £600 a month). I am too scared to upset him as I know that most nhs doctors will not prescribe it. I had a horrid reaction to T4...in fact, nearly all of my symptoms kicked off when I started taking it.

    Thank you for listening. I will be watching this site and will hopefully be able to support others as you have me.

    x

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