Pmr and pain - where do you get pain?

[Claremarie83]

Hi,

I have recently been diagnosed with pmr after covid. I'm wondering if it is pmr or if it's 'just' long covid (which in itself is pretty awful) so ... If you have pmr and if you have pmr and long covid/M.E would you mind sharing where it hurts you and any tips on how to balance exercise and rest because I'm really struggling here..

I get pain and stiffness in my shoulder blades and across the shoulders along the back and tops, pain across the back of my ribs when I breathe but only when I walk too far, pain in my hips which get better with movement, pain in the back of my thighs, glutes and calf pain which can be excruciating! Also foot pain on the tops of my feet with redness on the left, but that could be due to an old injury (I tripped on a non slip mat 🤦‍♀️🤣)

Also I bruise really easily and catch everything going, which then turns into a secondary infection (chest/ pleuritic pains etc) this is all before prednisolone, I'm currently on 14mg, been tapering since last week from 15

Thanks for reading

[PMRpro Ambassador]

There is often little difference - PMR isn't the disease, it is the name given to a set of symptoms which were triggered by an underlying disorder. So if you have these symptoms they will label it PMR.

In our case, it is due to an underlying autoimmune disorder, the immune system is not able to recognise the body as self and turns on it in error and attacks various tissues, causing inflammation and the symptoms we call PMR. Many different events can be the final straw that upsets the immune system and sends it haywire - no single thing does it, it is the accumulation over years until one things is the straw that breaks the camel's back and the immune system goes mad. It may be an infection, other illness, trauma, stress, environmental conditions or chemical substances - no way of knowing.

Covid itself can cause symptoms that could be labelled PMR or it, like any other infection, may have been the final straw. There is no cure except time until the autoimmune disorder burns itself out and the immune system calms down. In the meantime, all that can be done is symptom management, usually with steroids though occasionally other so-called steroid-sparing medications may be used. Lifestyle adjustments are also useful - being on pred which may relieve the symptoms isn't a free pass to go back to normal activities. Everyone is different and you have to be aware of what you can manage.

This post may be helpful

healthunlocked.com/pmrgcauk......

and I'm sure others will be along, DorsetLady has an introductory post which probably also includes the link I have given you but also other important stuff.

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

As PMRpro mentioned my introductory post which might throw some lIght on things for you.

healthunlocked.com/pmrgcauk...

I didn’t have PMR but GCA , but others will be along to give their experiences on your question.

[AtopicGuy]

Chronic fatigue syndrome (CFS/ME) does not respond to steroids. Nor does fibromyalgia. PMR is an autoimmune disease that usually comes on suddenly and causes severe pain and stiffness in muscles. Often patients feel worst after waking up in the morning and the symptoms ease somewhat after 45 minutes or more. Usually, the symptoms affect both the left and right sides (bilateral). The areas of the shoulders and hips are often worst.

[ChrisBeeLoop]

My understanding, which is nowhere near as good as others in this group, is that with PMR the pain is normally bilateral. Mine certainly was in my hips and thighs, but not so in my shoulders. My GP, who was very quick to identify the problem, kept asking me about my shoulders and, in my innocence of PMR, I kept saying no, this arm is OK. Thank goodness she didn’t listen to me. Furthermore, my 20mg of Pred didn’t take the pains away immediately, but took a week or so to kick in fully. But my CRP blood test result was high at 79. The point I am making is that you may not have classic symptoms or test results but a good doctor will see the wood through the trees and bilateral pain is certainly an excellent indicator.

Good luck on your journey. I think the most important thing I have learnt from this group is to slow down, be patient, and accept that you are in it for the long run.