Worried Newbie

[Fluffyjellytot]

Hi everyone

I’m hoping someone can give me some advice or help put my mind at rest.

I’ve had pain in my shoulders and arms for over 2 months now. Much worse in one arm than the other and this shoulder is locking up.

I’m seeing a physio who went down the trapped nerves route and now frozen shoulder route.

I am concerned that this doesn’t explain the pain in my other arm.

I don’t really have pain elsewhere except at one spot in one hip which has recently started.

My mum has PMR.

I am almost 51 and getting night sweats which I had thought were menopausal.

My doctor hasn’t seen me due to Covid but on the phone dismissed PMR as a possibility.

I don’t know whether to phone back and try and insist on a test, or whether the symptoms should be elsewhere in my body as well.

Recently the stiffness is extending up to my neck and jaw which is making me doubt frozen shoulder.

I’d be so grateful for any advice. i know my mum wishes her symptoms were diagnosed earlier but I don’t want to waste the time of the medical professionals if it’s not likely that I have PMR.

Thank you so much.

[DorsetLady PMRGCAuk volunteer]

Hi

I see you’ve read my introductory post - hope it helped a bit.

My concern is that it sounds very similar to my introduction to GCA- GP went down the “frozen shoulder” route for much too long.

So I urge you, please get an appointment and blood test - and don’t be fobbed off by anyone - untreated GCA can lead to eyesight problems. Even though you do not have head issues - it needs to be checked. It’s not a waste of time - if it’s not GCA, good - but as your mother already has PMR it definitely needs checking.

Please keep us informed.

[Fluffyjellytot in reply to DorsetLady]

Thank you DorsetLady

My mum have severe pain in her arms AND legs - she could hardly walk when finally diagnosed. Comparing myself to this I would not have PMR so I really appreciate hearing others experiences. It’s hard to insist if your Dr is being dismissive.

Xx

[DorsetLady PMRGCAuk volunteer in reply to Fluffyjellytot]

No you might not have PMR- but you most certainly could have GCA - that doesn’t affect hips/legs - just shoulder/neck /head and sometimes torso!

[Fluffyjellytot in reply to DorsetLady]

Oh! Thanks for the clarification. I has spotted GCA but did not know that it could exist without PMR.

[DorsetLady PMRGCAuk volunteer in reply to Fluffyjellytot]

Yes. I only had GCA - as did/do many others.

[PMRpro Ambassador]

Do you have an alternative doctor to speak to? Why was PMR dismissed?

[Fluffyjellytot in reply to PMRpro]

Hi

It was dismissed as my physio had asked for me to be referred to a frozen shoulder specialist. Based on advice from DorsetLady I am going to go fill in another online form for the Drs. I may get to speak to a different person next time.

[DorsetLady PMRGCAuk volunteer in reply to Fluffyjellytot]

Please do.

[Fluffyjellytot in reply to DorsetLady]

Just filled in the form. Thank you very much for your kind advice.

[Louisa1840]

I think the fact you have a mum with PMR should be a major flag. My brother and I both have it and there is no doubt there may be a genetic factor. Can you consult another GP? I think it's VERY likely.......

[Fluffyjellytot]

Thanks for sharing Louisa1840. You have strengthened my resolve not to be fobbed off again. The pain is really getting me down this weekend. X

[DorsetLady PMRGCAuk volunteer in reply to Fluffyjellytot]

Although we know that only Pred really sorts out the problem - do you have any painkillers around- they might dampen it down just a little.

Warm might also help - although a hot water bottle in summer is a bit incongruous!

[Fluffyjellytot]

Thought it might be helpful to leave an update. Since my original post I started with pain in my hips so I was expecting the worst. I got my blood tests back 3 days ago. ESR was 2 so pretty conclusive that I do not have PMR (Dr thinks so anyway). Markers for osteoarthritis also low. In light of the tests drawing blanks over what is wrong and being in quite a lot of pain and losing muscle, I got a prescription for Naproxen. 2 days into taking this now and it is helping. Why no one offered me this before is beyond me but better late than never.

[PMRpro Ambassador in reply to Fluffyjellytot]

Up to 20% of PMR and GCA cases don't have raised markers so I'd dispute the conclusion on those grounds. But if Naproxen helps he may well be right - it really doesn't help most people with PMR. If the symptoms and pain return without Naproxen try to get the GP to refer you to a rheumatologist: a presentation very like PMR that does respond to Naproxen may be ankylosing spondylitis and worth a scan to rule it in or out. Do you have sacroiliac pain?

[Abbey17 in reply to PMRpro]

I agree my markers always come back as good and apparently this is a common thing - I fortunately have an amazing GP & Rheumatologist who don’t rely totally one these

[Kimmylaw]

How annoying when GP dismissive. When there are many symptoms. They seem to think it's older people who are affected

[PMRpro Ambassador in reply to Kimmylaw]

They are justified in that belief!!!!