Hi every one,long time no text, I,m inquiring if anyone knows a good forum or site to find out about fibromyalgia as my daughter has just been diagnosed yesterday and the same thing apply s as to our GCA & PMR they dont know anything about it, she is in a great deal of pain and has been the last three months, I would really appreciate any help or advice,

I am feeling much better and have been of steroids for 8 months now and seem to be OK, still got my Osteoporosis thro that has not got any worse my hips are 1.5 and spine is 2.6, but not to much pain thank god as i am now trying to look after my daughter,. many thanks for all the help over the last three years,

good health to you all,.big hugs Anne

5 Replies

  • There Is a Fibro site on here. If you browse communities (list of all sites) you should find what you're looking for. If not, I'm sure one of the site administrators will point you in the right direction. Hpe your d is not suffering to greatly,

    Take car, all of you.

    Babs x

  • There is almost certainly one on - there is:

    generally very reliable, the moderator is very clear about rubbish not being allowed.

    Are they SURE it is fibro? There are so many overlaps between PMR and fibro and there is the family history...

    And here:

  • Hello Anne

    I'm so sorry to hear that your daughter has been diagnosed with Fibromyalgia. As PMRpro has already mentioned, there can often be some confusion between PMR and Fibromyalgia, and a member of our Charity, PMRGCAuk, together with a member of Fibromyalgia Association UK, wrote an article a few years ago comparing the two. The main differences are:


    Affects people over 50 years

    An inflammatory condition

    Symptoms of severe pain, stiffness and tiredness

    Can be accompanied by inflammation of the arteries

    Treatable with steroids

    Responds well to treatment

    Many side-effects of steroid treatment

    Good prognosis - generally lasts 2-3 years


    Affects people of any age

    An abnormal pain processing condition

    Symptoms of widespread chronic pain, persistent fatigue and non-refreshing sleep

    Many associated symptoms including cognitive dysfunction, IBS and anxiety

    Treated with analgesic painkillers, low-dose antidepressants and lifestyle changes

    Treatment response is variable

    Variable prognosis - symptoms can improve but can last many years"

    Your daughter will be able to gets lots of information and advice from the Fibromyalgia Association UK on their website I do hope her treatment will help with her pain, and also that your improvement continues.

  • Hello. I'm one of the really lucky ones - I've got PMR and Fibro.

    There are some useful books on Amazon. One called Chronic Myofascial Syndrome and Fibromyalgia. It is a big book with a lot of useful stuff in it. I have lent my copy to someone. I need to get it back.

    Treating Fibro according to my Rheumy- graded exercises - go to a gym and get a program set up, swimming, aqua therapy, over the counter pain killers, rest, heat, ice.

    If you have any spare money ( by you I mean your daughter, whoever) then you could look at The Breakspear Hospital in Hemel Hempstead. See their website. It is a hospital for environmental medicine - the only one in the Uk -- and will run fine tuned testing on your daughter to see if other things could help her manage her illness. good luck.

  • There is a book called fibromyalgia for dummies which is quite good

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