What is fibromyalgia?

Gp finally referred me to rheumatologist for severe joint pain. She says it's fibromyalgia?? I tried to explain about thyroid my tsh is 3.7 now and low b12 but she agreed with my gp that my results normal. Wants me to have pain management advice and physio?? And also to consider cbt. I have looked at a few fibromyalgia websites but it doesn't seem to fit how I feel??

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  • Hi Nursey.

    my tsh is 3.99 and I have been told that I have CFS, very similar to fibro.

    You have the same symptoms as hypothyroidism, but until your tsh gets above at least 5, many quacks refuse to treat. Some want your tsh to get to 10.

    With fibro/cfs/me, if you have a busy day then 24 to 48 hours later you are supposed to be in a lot of pain, unable to function properly. I am still waiting for this to kick in. I supposedly have cfs, I tell them that I am doing what they advise, but I am not!!! I did try for a couple of weeks, but as there was no change in how I am, I am positive that I do not have cfs.

    There are not many in the medical profession that believes fibro/cfs/me exists!!

    Hope you feel better soon

    Ann xx

  • There are some of us outside the medical profession that don't believe it exists either! I'm probably one of the most vociferous (read stroppy c*w). Imho, as somehow who has had "ME" for 37 years it is a dismissal not a diagnosis. It just means "go away, I can't be bothered to do enough tests to find out what is really wrong with you". It is undiagnosiable and untreatable. I totally refuse to believe that a "disease" that has hundreds of thousand of sufferers worldwide is not and cannot be diagnosable. It is absurd (imho) to think so when even the rarest of chromosome disorders can be and is diagnosed.

    No - it is a dismissal. It cannot be cost effective. The cost to society in lost employment and tax contributions simply has to outweigh the cost to the NHS but, of course, that's a different budget.

    /rant for day and crawl back into hole

  • Fybromyalgia, like CFS and ME is a symptom of something. It isn't a disease in its own right (imho) and you need to find out what is causing it. The most common cause seems to be thyroid/adrenal issues. With a TSH of 3.9 you won't feel well. I still felt ^%$& when mine was 2.5. Ask your doctor, if she was to treat your thyroid, what TSH level would she be aiming for? The answer should be less than 1.

    Has she measured your FreeT3 and T4 levels?

    Classifying fibro, CFS and ME as discrete conditions is simply a ruse to offer no treatment and no further tests. They are, allegedly, undiagnosable and untreatable. In other words - cheap. Don't let them fob you off.

    If your GP steadfastly refuses to help then can you afford an appointment with Dr P? Clinic dates here tpauk.com/content/1330/dr-p...

    Failing that, read around this site for options for self-treating. I take a lot of stuff my GP knows nothing about - he apparently hasn't stopped to wonder how my TSH is now 0.2 on just 25mg thyroxine. However, I have Dr P to guide and advise me.

  • It's so annoying that you can't edit posts. There are many things you can buy to help yourself, including herbal and vitamin supplements, but ALWAYS ask your doctor to test your levels first. And ALWAYS get your results.

  • Nursey, I have had years of pain in my neck, shoulder, arm, breast and more recently my leg. I've had physio, attended a pain clinic, even had minor surgery. The only thing that truly relieves it is having an adequate dose of thyroxine. I had other symptoms going on as well but my TSH was the high end of normal or 'borderline' for years.

    It will help if you can get your B12 higher by supplementing as this will help your body use the thyroid hormones. Have you had your Vit D, ferritin, folates tested? These are all important too - and don't take the doctor's word that these are ok as they will only be interested in them being 'in range' and not optimal. Get a copy of the results and post them in a new question (with the lab ranges) and someone will be able to advise you.

  • I have been that route also rheumatologist, pain clinic, physio, neurologist etc.

    From experience stress and depression exasperate the symptoms which ironically are caused by their attitudes which leave us with not only the abundant symptoms but worse after tests return normal we are left with "is this my life from now on" When I am left with little stress and took myself an additional 25mg of levo my brain fog lifted! and decreased my severity of symptoms. I have a long long way to go but with the knowledge from here and support we can all certainly improve our quality of life without the NEW Nhs collaborative healthcare approach. Putting the burden of heath care budgets on GP's who have to follow guidelines, achieve targets hidden as incentives whilst still attempting to put risks before budgets is a minefield of potential risks to patients and also subjects us to far from optimal quality of life unless we have the funds to go private. x.

  • i think these illnesses are all one and the same. Before I was diagnosed hypo. I spent year under rheumatology. I have psoriatic arthritis but since being prescribed T3/T4 joint and muscle pains well under control.x

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