Symptoms post PMR ? Connected to PMR

[Bettyflup44]

I had PMR for about 6 years and have been off pred for about a year and a half. I still ache all over in bed at night with burning hands and feet and have developed arthritis in my left hand particularly that has painful flare ups and is becoming a little deformed! I wondered if anyone else still has the flu like symptoms at night although now 'over' PMR. I am assuming the arthritis has nothing to do with having had this condition. I did ask for my ESR to be done a few weeks ago and for me it was raised at 29 but was told by my GP that I had had it higher, this from the GP who 6 years ago told me I couldn't possibly have PMR as I had pain in my hips as well my shoulders. I was a nurse for over 44 years so do have an understanding of medical matters!

[Riversnan]

Hello Bettyflup44

I have a condition which makes hands and feet and sometimes other parts of the body burn.

It’s named Erytromelalgia, I have had it for over 30 years now but it is very uncomfortable and can be quite distressing. It is temperature related, much better in the cooler weather or rooms that are not heated too much. My only relief is to put my hands or feet or both in a bowl of cold water.....pure heaven.

I would check this out with your doctor bearing in my mind it is classed as a rare disease and a lot of medical people have never heard of it.!!!!

It’s just a thought,

Well done for getting of the steroids an I hope you DONT have EM.

Very Best Wishes

Riversnan

[Riversnan in reply to Riversnan]

Sorry I spelt Erythromelalgia wrong in last post.

[DorsetLady PMRGCAuk volunteer]

Hi,

The ESR could well be raised by the arthritis itself, particularly if it's painful and inflamed, but I guess you probably know that.

Although PMR and GCA come under the umbrella of Rheumatology, I don't think having one necessarily means you'll get the other.

I've had arthritis in left shoulder and knee for years, well before GCA, and although they are both worse now than pre GCA I put that down to the passing of time and natural degeneration rather than the GCA.

My ESR usually runs high teens to low 20s, but my arthritic shoulder/knee don't seem to be inflamed or hot, so I would have though that 29 was higher that it should be, but as we all know it can be affected by many things.

Do hope you get a diagnosis and relief soon. Please let us know the outcome.

[PMRpro Ambassador]

My suspicion would be that you do actually still have some low-grade PMR activity. Who cares if you "have had a higher ESR" - it is raised. It would be interesting to follow the trend - is it rising? It is quite possible to have second episodes of PMR - and they rarely resemble the previous ones!

[SheffieldJane]

Flu -like symptoms have always been a major component of my PMR, I am on 7 mgs of Pred. I found that slathering my feet in ointment ( petroleum jelly type) and putting socks on eased the burning feet. Mine burn and then the skin splits and is a Psoriasis symptom.

Are you fine during the day? It does sound as if PMR inflammation might still be present. Do pain killers help? If not then as you probably know that is another indication that it is PMR.

[Patience47 in reply to SheffieldJane]

Jane, flu-like symptoms have always been a major problem for me too. I dread it even more than the muscle pain. However, migraine headaches are the worst for me.

Edward

[Bettyflup44]

Thank you so much for all your comments and replies. I am not too bad during the day but more tired than I used to be perhaps it is age and helping with tiny grandchildren - I am 73. Unfortunately I have had to instigate every GP appointment, blood tests and dexa scan myself which is a bit galling when I listen to others who seemed to have had an interested GP. I will see how I go as my flare in my hand has now subsided meaning I will probably feel better all over!!!

[DorsetLady PMRGCAuk volunteer in reply to Bettyflup44]

Hi,

Mine's interested and very good, but he does have a habit of blithely saying, "just make an appointment if you need to come back" - that's where the problem starts!

Maybe it's because it's an offshoot of a bigger town surgery, and he divides his time between the that and our village one. But it's a bit frustrating at times.

[PMRpro Ambassador in reply to Bettyflup44]

"perhaps it is age and helping with tiny grandchildren"

Never mind age - you have a potentially serious autoimmune disorder. You need to rest appropriately and not be looking after small children. That is for under 40s - it sounds harsh but that is the reality. Autoimmune disease is almost always accompanied by fatigue - and resting and pacing is the only way to deal with that. Pred manages the inflammation, you have to manage the rest.

Don't feel too bad - most people have utterly disinterested doctors too!

[SheffieldJane in reply to Bettyflup44]

Same here re the instigating GP appointments and they don't add much value unless for specifics. I envy you your tiny grandchildren from the bottom of my heart. My great motivators have gone to Australia.