Has anyone else been told this - Fibromyalgia Acti...

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Has anyone else been told this

Poppylop profile image
10 Replies

Hi everyone, I had a muscular skeletal appointment this week, the Dr said he thinks i may have Polymyalgia Rhuematica which is an inflammatory condition that affects the muscles, it is my muscles rather than my joints that are hurting but when I read the symptoms i still feel that fibromyalgia seems more likely, as I have lots of other things going on, has anyone else been told they may have this. I had a load of blood tests and I have to see a rheumatologist and have physio x

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Poppylop
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desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

it's a common differential diagnosis and the treatment provides relief quite quickly.

in reply to desquinn

Hi Des- can you say what treatment you know exists for polymyalgia? I am chaperoning my sister to her rheumatologist 2 Sept and would like some ammunition to take with us..

Many thanks

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

Steroids are the treatment for PMR and provide relatively quick relief.

in reply to desquinn

wonderful thanks- at the moment she has Humira sub cut along with tramadol omeprazole paracets nothing helps the strong muscle pain in her arms and shoulders, her g.p said it was PMR but we need her consultant to confirm,I guess he,ll take bloods to check her rheumatiod factor and her FBC,s (well he will if I have anything to do with it) She applied for PIP 14 moths ago, we are at Court of Appeal stage waiting.

Rose54 profile image
Rose54 in reply to

Hi

Can I just add that many dont show any inflammation in blood test but still have PMR my bloods have never been raised and it took 3 years to get diagnosed .As Des says only treatment for PMR is steroids normal starting dose is 15 to 20 mg a day .

Many have instant relief re pain but some take a week or so.

Pain is mainly in shoulders hips and large muscles and always bilateral

Autoimmune GP will say it last for 18 months to two years but latest research says up to 9 years of more.

HU have a fantastic PMR/GCA site

Dinkie profile image
Dinkie in reply to

Hi NurseGladys - replied on your other post. My other half has PMR and GCA and I have to say the treatment works quickly - as Des says its steroids - usually pred on a high dose to begin with then tapering off as symptoms ease. Other half never been able to come off the steroids though although now on much lower dose. Lots of info on the HU PMR site. Other half has regular blood tests and they do show inflammation but as we know different people show different symptoms.

Yes I hear you- my younger sister has this she is 52, she also has ankylosing spondilitis which is a rheumatic inflammarory disease that hits mostly hips joints, neck and jaws, in men it gets their neck rigid so that they can only move their eyes or swivel to look around, unfortunately she has the mans ..I had A.S initially and fibro came off the back of that, my A.S went into remission after 17 years and I,m not sure I wouldnt rather have A.S than fibro at least the pain can be kept under control..Insist hun that they treat you properley for Poly, bang on the table wave your fists whatever but dont walk away with paracetamol as my sisters rheumo docs assistant tried on her.. good luck let us know how you get treated, maybe ask about some hydrotherapy my sis finds it wonderful as I do

Lou1054 profile image
Lou1054

I have recently been diagnosed, make sure this is followed up properly x

Manaus profile image
Manaus

The GP tested me for it too but my inflammation markers are borderline, most of my pain is thighs. I have finally got an appointment in a couple of weeks. I do hope it is PM rather than Fibro as at least there is treatment.

Reykua profile image
Reykua

Yes. My GP suggested the same thing and I was equally bewildered at the time and I drove myself crazy looking up everything I could about it on the net.

Fortunately, she didn't give me ANY medication for it at all, instead, she prescribed Amitriptyline and gave me a referral to a Rheumy and Physio.

The Amitriptyline worked well and I started to feel somewhat better - and drowsy immediately. The aftereffects of the time delayed fatigue and pain of the physio was much more difficult to cope with.

The Rheumy appointment six weeks later stated that I had Fibromyalgia, not Polymyalgia Rheumatica. In fact, I had absolutely no rheumatic markers at all at the time so all that worrying had been a waste of my time and energy.

As you know, many symptoms of various ailments overlap with fms so don't treat yourself kindly and don't anticipate anything until you've actually been given a diagnosis by the Rheumy ok.

Wishing you all the best going forward. The appointment date will be here sooner than you think. Then, you can start to worry if necessary.

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