Polymyalgia

[lyndaferrin]

just diagnosed. Any tips to help with the pain/mobility?

[Charlie1boy]

Hi Linda,

I'm sure you will get lots of good advice from others on this forum. I've had PMR for over two and a half years and have found the forum to be absolutely excellent in almost every way.

Thinking back to when I was first diagnosed, one of the best things I did was to get hold of two booklets . These are - Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. This is written by Kate Gilbert and is available on Amazon. And Living with PMR & GCA, which is available via pmr-gca-northeast.org.uk. They both tell you lots of things you need to know.

That apart, my only advice I would give is not to taper down too quickly, and to give yourself plenty of rest ( that is essential, as I guess you will find out!).

Anyway, good luck.

Paddy

[DorsetLady PMRGCAuk volunteer]

Hi Lynda,

Good advice from Paddy. Also have a look at this -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Pacing and resting are key - just because you feel better once you are on pred does not mean you can go back to normal activity! Your muscles remain intolerant of acute exercise - you will find you get over-tired and very sore after if you try to do too much at one. Break things into small doses and build up slowly - and if you do go into "training" it is a good idea to have one day doing the exercise and at least one day rest to see how you recover at first. You will be able to do more, just not yet.

This post gives some links to allegories and articles about the fatigue of chronic illness:

healthunlocked.com/pmrgcauk......

There is lots to read on the NE charity site Charlie1boy mentions

pmr-gca-northeast.org.uk/

and they have a forum of their own with a whole section of that sort of post with advice collected together:

tapatalk.com/groups/pmrandg...

Beyond that, you can always try using the Search box in the top right corner to find old posts here and if all else fails - ask a specific question in a new post.

[CT-5012]

Accept offers of help. Best wishes. 😊

[SheffieldJane]

Hello and welcome lyndaferrin !

They've said it all really. Use this space for specific concerns and questions and sometimes just to vent. You'll be amazed at how self sufficient you become and good at training doctors.

[pollyg263]

yes just take 1 step at a time, and DONT rush your down dosage of pred do it very slowly. the slower the better. if it means staying on pred longer, do it rather than have flares xx

[Rugger]

Welcome Lynda,

I agree with everything said above. I tapered at 1mg per month and then flared at 4mg and had to go back to 10mg, effectively 'wasting' 6 months, when I should have taken that time to taper at 0.5mg per month or even more slowly. We live and learn! This time, I'm more mindful.

You'll learn so much here. Best wishes.