How do I get diagnosed I’m suffering with bad pain.

[Twinkle26]

Hi don’t know if this is what I have but I’ve had excessive pain in upper arms both sides and progressed to shoulders around clavicle and back of neck. I’m struggling to get in and out of bed slide out side of bed and hope I don’t fall off. It’s now affecting my legs thighs mainly. Can only sleep on back can’t put any weight on upper arms . I’m on tramadol for the pain, I already have PBC under active thyroid alopecia,

Diabetic reynards, it’s never ending. How do you get diagnosed I’m waiting a scan at hospital it’s been over 6 weeks so far and not getting any better even painkillers are just scratching the surface.

[SnazzyD]

Sounds grim. Presumably you think it might be PMR as you’ve posted here. Have you tried suggesting PMR to a doc? What type of scan and of which part of the body are you waiting? Have they given any opinion at all?

[Twinkle26 in reply to SnazzyD]

No opinion blood test they said was negative for arthritis, only one significant was my liver test as I have PBC. I’m having ultra sound scan.not said anything to go as it was 4 weeks of just phone consultation then last week an actual appointment. More tramadol. Scan appointment sent for arms. Still suffering with pain 6 weeks plus.

[Twinkle26 in reply to Twinkle26]

Gp

[SnazzyD in reply to Twinkle26]

Do tell the GP what you are experiencing and suggest possible PMR as the picture sounds likely. Is the scan of the shoulder joint? It won’t say if you’ve got PMR or not so I wouldn’t wait before pressing for more ideas. As SJ says you need a trial of Pred because you can have PMR but still have normal inflammatory markers (ESR/CRP), but it is not clear if they’ve checked that. If I read correctly you’ve not told them about this pain pattern so what are you getting Tramadol for?

[Twinkle26 in reply to SnazzyD]

Tramadol is for the arm/ shoulder pain.

[PMRpro Ambassador in reply to SnazzyD]

Does help diagnose PMR if you have bursitis:

pubmed.ncbi.nlm.nih.gov/113...

If Salvarini says so ...

[SheffieldJane]

You need to explain these symptoms to your GP and request CRP and ESR blood tests that will give an idea of inflammatory levels. Some people’s inflammation does not show in the bloods so diagnosis is made on symptoms alone. If your doctor tries you on Prednisalone ( UK) Prednisone (US) for a week or so and you do have PMR, then you are likely to experience profound relief from symptoms in a very short time. This is how my diagnosis was made. Your symptoms do sound familiar. You need to put this in motion immediately, don’t be deflected.

[Twinkle26 in reply to SheffieldJane]

Thanks I will call them again x

[Mary63 in reply to Twinkle26]

The picture you describe is very reminiscent of mine before diagnosis. My shoulder scan showed calcification and my GP said it explained my pain. That doesn’t make sense when the onset had been relatively sudden does it?

My pain like yours started with upper arms shoulders neck and then, like yours moved to lower back.

My feeling is it is highly likely you have PMR.

Push the GP for blood tests and even they are not raised (as mine and 20% of others are not) push for a trial of prednisolone 15mg to 25mg daily.

I wish you the very best of luck.

[Charlie1boy]

Hi,

I feel for you with all that pain!

It does sound like PMR, and my diagnosis was just as descibed by Jane. They took the blood tests for ESR and CRP, which did show inflammation, so straight onto prednisolone at 20 mg. this brought pain relief after about ten days (for some the pain relief is instant).

For my GP, this was proof of PMR, and I have been tapering down for the past five and a half years! Now on 1 mg. this can be a long term affliction, though some, about 20%, get away with a couple of years.

Good luck.

Paddy

[Twinkle26]

Thank you all I will keep you updated when I have some info x

[1jamaica2 in reply to Twinkle26]

Hi. I hope they diagnose you quickly. The problems you are having sounds just like mine at the start. I couldn't get out of bed,then couldn't get dressed properly. Had to get girls in my office to do my bra up some days. All my GP told me to do was go for physio. It was when I did this that they told me I should see a rheumatologist. It took 3 months for GP to give me Pred 15mg which helped straight away. 18 months later I saw a rheumatologist who agreed with what they had said. Told me to reduce Pred by 1 mg every three weeks. I had a bone scan about 3 months later,but have seen nobody since. All that started 3 years ago. I now take 3 mg each day and sometimes I am in a bit of pain,and as I work full time,I get very tired.

I hope you get better treatment than I do in my area.

[PMRpro Ambassador]

What sort of scan?

You could try giving this

rcpe.ac.uk/sites/default/fi...

to your GP and asking if they would be willing to try the diagnostic test described in it. It was written to help GPs diagnose and manage PMR without waiting for a rheumatology appointment which can take a long time anyway - never mind the delays due to Covid.

It isn't uncommon for liver tests to be raised in PMR - are yours higher than normal?

[Twinkle26 in reply to PMRpro]

It’s an ultra sound scan. I phoned Gp he has left me a prescription for pred 20mg but said wait to see what scan says. If nothing then take pred but if the scan shows something else then wait.

[Suffererc]

My daughter , a nurse practitioner in another part of the country to me, looked up and printed of the symptoms of PMR for me. Showed to my nurse practitioner and he just dismissed it and said I had flu symptoms. (My PMR was caused by adverse reaction to a medication). Had to shout at receptionist when she tried to refuse me a DOCTORS appointment. Got there in the end and have now had treatment for over 2 1/2 years

[piglette]

Similar symptoms to me. I was in excruciating agony by the time I got diagnosed, my GP said I had a virus, a long term one! Diagnosing PMR is really a matter of excluding everything else. If tramadol works it possibly is not PMR, as PMR really only responds well to steroids. What you can do is ask your doctor if you can try steroids for a week or so and if magic happens it is very likely to be PMR. If it does not work, you can then just stop them.

[Twinkle26]

Hi all I had the ultra sound scan my Gp said for me not to take the steroids just yet as scan showed a small tear on right shoulder and calcium deposit on left shoulder. He wants to wait until he receives the report. She said I have arthritis but more investigation before know which one. I will need op on left shoulder to remove the calcium deposit.

It’s really painful and I’m doing what he says but can I have pmr and still have this going on.

I also have PBC. Under active thyroid.

[PMRpro Ambassador in reply to Twinkle26]

Yes you can have both - and very often patients are misdiagnosed because of doctors thinking in only one direction.

[Twinkle26 in reply to PMRpro]

What do I do know I’ve been told that I need to have physio I’m in constant pain and he wants me to do exercises. Everything else is almost back to normal but physiotherapists are still doing video calls. So my so called physio will be by video call. My Gp has said he’s waiting on my report from ultra sound scan. I told him what she said but he’s waiting on report. I’m still taking tramadol and paracetamol but again only taking edge off pain not taking away.