PMR or Myofascial?

[ClioMcM]

I’ve been treated for PMR since November 2020 and am now off steroids but feeling really quite unwell. I’ve now been told I have myo fascial, not PMR. I am unsure what to do next.

[DorsetLady PMRGCAuk volunteer]

hi,

Well you could be a bit more specific about ‘feeling unwell’….do you have aches and pains like pre diagnosis. …and therefore PMR . Some people manage to be free of PMR within 2 years, but there are a lot that don’t, despite what you doctor may say/think.

Could by myofascial pain, could be adrenals not working correctly…..

So more info please.

[PMRpro Ambassador]

One expert in Aus considers there to be a very close connection between myofascial pain syndrome and PMR - something I have maintained for years. They are caused by the same inflammatory substance,

But without a lot more detail, difficult to say anything.

[ClioMcM in reply to PMRpro]

Thank you for this. I was originally diagnosed with PMR by my GP over the phone early during lockdown without any tests and prescribed 20mgs Prednisolone and instructed to taper 5mgs per month for 3 months and then 1mg per month after that. This helped but anything below 4mgs made me feel really unwell again, so it took a while to get to a really low dose. I have trouble sleeping and feel very fatigued and often low. I have privately consulted a rheumatologist over the past year and the most recent visit involved a blood test which showed a ESR of 10 and a CRP of 3. His conclusion was that the PMR is not clinically active and that no steroids should be needed. He think it is likely that I have myofascial pain consistent with fibromyalgia syndrome. I finally came off steroids early September 2022. I am in quite a lot of pain and struggle to get in and out of the car and getting up out of any crouching position. The pain is bilateral. It is acute around the neck region and while I don’t feel I have headaches, my head feels ‘thick’. My eyesight has deteriorated, although this could be simply ageing. I take 2 paracetamol daily and this does help a bit. I am not sure what to do for the best.

[PMRpro Ambassador in reply to ClioMcM]

That's a right load of "what????????"

It is bad enough to diagnose over the phone - but his use of pred bears no relationship to a recommended taper I have ever seen, and I've seen a few! I'm not sure that his conclusion is right - BUT the fact paracetamol "helps a lot" does suggest that the PMR isn't that active and his suggestion of myofascial pain syndrome may not be far off the mark.

A lot of how you feel MAY be secondary adrenal insufficiency as well as low activity PMR - or even fibro though I am sceptical about that.

Not sure what to suggest - except a different rheumy.

[DorsetLady PMRGCAuk volunteer]

couple of points -

“His conclusion was that the PMR is not clinically active and that no steroids should be needed,

The only way he or you know that, is if you come off Pred completely and no pain returns…unless he has a crystal ball and/or X-ray eyes.🤔

If he’s basing that opinion on CRP/ESR levels of 3 /10, then he doesn’t fully understand how Pred works - it should be keeping the inflammation caused by PMR under control (as they are) but do nothing for the underlying illness itself.

The pains you describe with resonant with many with active PMR.

As for the fatigue and feeling low that could be associated with your adrenals - specifically not working to their full potential - which can take anything up to a year after finishing Pred. Perhave a look at this -

healthunlocked.com/pmrgcauk...

[ImC_]

I'm posting to this thread on behalf of ClioMcM. I've been talking to her today. Her update accidentally went to a new thread. A bit unorthodox but she is feeling very fatigued and I said I would do this for her.

ClioMcM says:

I just want to clarify that the blood test results I had (from the only blood test I’ve had since diagnosis) for the inflammatory markers were done in the beginning of September, when I was still on around 1mg Prednisolone. Also that the painkillers I take in the morning only help a bit, not a lot. Having spoken to someone who also has PMR, I am wondering if I should ask my doctor for further tests, including tests to establish whether my adrenal glands are working/whether what I am feeling is primarily AI. Also possibly to consider a short term return to Prednisolone to see if that relieves all the symptoms.

[DorsetLady PMRGCAuk volunteer]

ImC_

For completeness have added comments I made in her second post here -

I sent link re adrenals above -so worth getting them checked..

But if painkillers aren’t helping then you probably still have PMR so therefore do need to go back on Pred, which may make testing adrenals meaningless depending on what dose you are taking. 

Whatever, you do need to contact GP….although some do manage to get through PMR in 2years -there’s an awful lot that don’t.