Recently diagnosed PMR

[Mintymow]

I have been recently diagnosed with PMR but I'm not sure about it. I don't seem to have the classic symptoms. I'm not stiff in the mornings, I have had trouble with my right shoulder and some pain in my neck. What does concern me is the odd like shooting pain in my scalp, lasts seconds, and the sometimes tenderness when I touch it. I have a raised ERS and have now been put on Pred which I have been taking for 6 days now. My shoulder is more or less ok now and symptoms in my head less. I am under a lot of stress caring for my husband 24/7 due to a stroke. I'm wondering whether my symptoms are more stress related than anything else. Anyone have an opinion please.

[PMRpro Ambassador]

Really very very difficult to say. Who made your diagnosis and what dose of pred are you on?

You don't HAVE to be stiff in the mornings though some degree of stiffness at some time is one of the criteria. In fact, there are criteria which should be fulfilled in order to say "this is most likely PMR" and you haven't mentioned much that sounds familiar other than the raised ESR. How high was it?

The pain in PMR tends to be bilateral and fairly equally so - unless a shoulder has a bit more bursitis for example. I had had shoulder, neck and head pains similar to what you describe for some time before the PMR appeared and it was due to pinched nerves from a trigger point in the trapesius muscle (that's the one that forms your shoulder and where your bra strap sits). I had a brilliant osteopath who helped keep it under control and any opportunity for massage aimed at that shoulder was wonderful! I also went to a Bowen practitioner and she did a lot too - really worth a try for neck and shoulder problems as well as low back.

When the PMR set in it brought back those problems but they are definitely something separate that is made worse by the PMR - I've had a few episodes as I have reduced the pred dose and an orthopaedic specialist who has done research says it is something called myofascial pain syndrome which forms hard knots of muscle fibres in certain trigger points in shoulders, mid back and low back. These are relieved by higher doses of pred because it is also inflamed areas of the same substances that cause PMR when they are all through your system. I have had cortisone injections and manual mobilisation of the trigger spots and that is almost gone - no neck and head pain any more! Other bits aren't quite as good but it is manageable now. But the heavy work of caring for a stroke victim would definitely make it worse - I can't lift or carry anything heavy without pain.

[Mintymow in reply to PMRpro]

Thanks for your reply. My ESR was 50 but GP, who diagnosed PMR, said it has been going up steadily over the past few years. I have had a Bakers cyst and bursitis in my right knee for some years and it is always swollen so I wonder if it could just be that. I have an apt. on the 30th to check progress so I will definitely raise my concerns over PMR. I am on 15mg Pred daily. Certainly the pain that other seem to be experiencing appear to be more than mine.

[PMRpro Ambassador in reply to Mintymow]

What were his grounds for choosing PMR? It is a clinical diagnosis - i.e. on the basis of symptoms. ESR is only one and very minor part of it. If you have unresolved bursitis in your knee and it has not been treated I would think that is enough to raise an ESR, especially if you also had shoulder problems.

You can have very mild degrees of PMR - I had it for 5 years before getting pred. I could function though was never pain free and to be honest it wouldn't have been worth much pred! Then it hit like a 10 ton truck!

[Mintymow in reply to PMRpro]

I think his decision had more to do with the discomfort in my scalp than anything else. that's the impression I got. Thanks again.

[DeliaGray in reply to Mintymow]

Has your rheumy considered GCA? My symptoms were similar to yours, starting with neck pain, and developing into shooting head pains with scalp tenderness. My ESR was at 120 , much higher than yours and it was my wonderful GP who finally diagnosed GCA .He had never had a case before and referred me to the rheumy, who immediately started me on 80 mg of prednisone as I had had problems with my vision by that time. I am doing well now with no PMR pain, and my prednisone is now down to 13 mg a day. I was diagnosed last July after 6 weeks of tests for everything imaginable it seemed.!

I am so thankful for this site, and the helpful information that I have received. I live in the USA but am a Brit. GCA is pretty rare here, but incidences are increasing. Be good to yourself.