Pain worse in the evening. Mild PMR or something else?

[PurpleNDH]

I'm undiagnosed and not on any meds at the moment. My GP initially suspected PMR as I had bilateral pain and stiffness and a raised ESR, but the pain and stiffness slowly improved over a couple of months and my ESR dropped back to "normal" (though I don't actually know what "normal" was for me prior to this!) so she decided to refer me.

I'm seeing a Rheumy next month and was tempted to cancel the appointment as I was feeling so much better, but in the past 2 weeks I've developed new stiffness in my left hip and a burning/tingling pain across the top of my back/across my shoulder blades that gets significantly worse as the day wears on. It's not noticeable in the morning but starts mid afternoon-ish.

Can this happen with PMR, or does it sound like something else? (I'm due to have a repeat blood test for CRP and ESR at the start of November so can't say what my levels are at the moment.)

Thanks in advance for any contributions!

[PMRpro Ambassador]

There is a form of inflammatory arthritis called palindromic rheuamtism where the symptoms start suddenly, last from a few hours to a few days and disappear again for some time (which varies) until there is another attack which can be in another joint or joints. It suggests that the immune system can become active in attacking body tissues intermittently to cause symptoms but then goes into remission. Sometimes these episodes disappear altogether - sometimes they retrun more joined up. It also happens in other autimmune disorders so I see no reason why PMR should be any different,

However - not being stiff in the morning but it developing through the day is not seen as typical of PMR - one of the criteria they quote for research is morning stiffness lasting more than 3/4 hour. Stiffness that recurs after periods of inactivity is also common and recognised as part of PMR. Increasing stiffness during the day tends to be thought more inidicative of an inflammatory arthritis.

You might find this interesting - it is a study of perceptions of stiffness in RA.

ncbi.nlm.nih.gov/pmc/articl...

[PurpleNDH in reply to PMRpro]

Thank you so much! Your help, as always, is really useful. I want to make the most of my appointment next month so the more I know the better.

Thanks again!

[vosadrian]

Hi PurpleDH,

I tend to lurk on this forum as I have some undiagnosed chronic pain that I thought was PMR about a year ago. I clicked your thread as like you, I tend to get worse through the day. I am at my best when I get up in the monring. Worst for me is if I lay down on the couch in the evening to watch some TV. The reason I am posting is that just recently (last 6 months) I have developed the same symptom you describe "burning/tingling pain across the top of my back/across my shoulder blades that gets significantly worse as the day wears on". I have had pain and a similar feel in my pelvic/lower abdominal region for a long time which is why I first investigated PMR here in the first place. I could have PMR, but the tendancy to get worse rather than better through the day does not support that. At one point I tried Pred 15mg for a week or so (before the shoulder/upeer back symptoms) and it did not seem to help me also.

So I am posting here just because you seem to have similar symptoms to me. I cannot help at this time unfortuantely, but if you do find something out, please update here.

Cheers,

Adrian

[PurpleNDH in reply to vosadrian]

Hi Adrian

Thanks for that! It always seems to help me if others have similar issues. Something about being in it together I guess!

Yes, I most definitely will let you know how I get on. Please do likewise if you get any answers too!

Wishing you lots of luck!

[vosadrian in reply to PurpleNDH]

Thanks for that. I will most definately update here if I find a solution (and I will be shouting from the roof tops with joy also!!). Wishing you all the best. Hopefully your Rheumy appointment helps. I saw a Rheumy about 18 months ago before the shoulders/neck symptoms started and that did not help me at that time (tried a few medications around Ankylosing Spondylitis which did not help). I am not sure if I should try again with the added symptoms.

All the best!

[PurpleNDH]

Well I'm still none the wiser but I'm going to be very busy having tests!

I had my first consultation with the Rheumatologist last Friday. It was over the phone but at least it happened! She didn't draw any conclusions (so she said anyway) but said she would request an MRI of my muscles and spine, Xrays of my neck and lower back, nerve conduction tests, a lung function test, physiotherapy and a raft of blood tests. It seems a pretty decent list of investigations (assuming they happen with Covid constraints of course) so I'm quite happy.

The blood test forms arrived today (LOADS of them!) and, despite saying she hadn't drawn any conclusions, it would appear that she's looking for possible signs of Myositis. I've joined that group on Health Unlocked but they don't post very much and I can't see much in the way of useful descriptions of what it feels like, other than weakness, pain and tiredness.

I'm definitely finding that I'm more or less OK in the morning but get very achey and "burn-y" by mid afternoon. I can "reset" but going to bed for an hour or so and then start hurting again mid evening.

So a cheeky question, and one that ought to be my last in this group as I don't think I have PMR, but does anyone here have any similar experiences or have Myositis?

[PMRpro Ambassador in reply to PurpleNDH]

I don't think there is a lot of difference between PMR and myositis in terms of what the patient experiences as symptoms. The difference is in the blood tests: in myositis the CK (creatine kinase) test is raised. in PMR it is normal.

[PurpleNDH in reply to PMRpro]

Thanks! At least that’s a clear indication one way or another. I hadn’t realised that there were so many similar conditions. It’s definitely a learning curve.

[PMRpro Ambassador in reply to PurpleNDH]

As long as the doctor has it the right way round - had one recently who reckoned a raised CK was found in PMR! The basic treatment is the same anyway - pred!