Help

[joat]

Sorry to be asking this as I believe it has been posted a couple of times before but I found it the first day I joined this forum and unfortunately did not take a note of where it came from. I think it was written to inform others how devastating the pain/stiffness/fatigue affected most people and tips for adjusting to a new life. Was it from PMRpro or DorsetLady?

[DorsetLady PMRGCAuk volunteer]

PMRpro ...

Fatigue, pacing, spoons - and a gorilla posted 2 months ago.

If you select About button (under banner) on this page you can Find a member - type in PMRpro and it will bring up her profile and posts - just scroll down it's not too far.

[joat in reply to DorsetLady]

Thank you DorsetLady for your prompt reply. I clicked on About but no page with Find a member so I think you probably have much more updated computer than mine!!

[DorsetLady PMRGCAuk volunteer in reply to joat]

Sorry, didn't explain very well!

Try again, on the About page you will find a paragraph about the charity, then scroll down to the administrators details, underneath - View all members - select that, takes you to new page - then you should be able to type in PMRpro's name!

[joat in reply to DorsetLady]

Found, but not anything on there that seems to be what I am looking for, still many thanks for taking the time to help this oldie.

[PMRpro Ambassador]

Or do you mean "I suddenly felt I'd aged"?

healthunlocked.com/pmrgcauk...

[joat in reply to PMRpro]

Thanks, how do I find it?

[PMRpro Ambassador in reply to joat]

Just click on the blue bit in my post - when you see something in blue in a post it is usually a link. Clicking on it takes you directly to the post.

And here is the link for the fatigue and gorillas...

healthunlocked.com/pmrgcauk......

[joat]

Done and have printed out. Do not remember this is what I was thinking of - probably at the time of first reading I was suffering from foggy head! I admire you for all the wonderful advice you have put (and still doing so) on this forum. I have read a great deal of posts since joining this forum. I was diagnosed with GCA fifteen months ago and now believe that I was not given enough Pred 40mg and also told to reduce quickly. PMR came after about four months when I was on 15mg. For the next six months I was unable to get out of bed without wanting to cry with the pain and stiffness, even going to the toilet was a battle. At one point I spent 14 days just wandering round the house as the pain was so severe. Doc put me on Codeine/Paracetamol but not a lot of relief. I am on 10mg and am able to get out of bed, with pain which wakes me during the night, but I am better than a couple of months ago and I can put up with it during the day.

The bruising is really bad on arms and legs, some are 2"x1/12" and just appear over night. Find it painful even to wash as skin is so thin and sensitive.

I have now come to terms with this illness and am pacing myself and being honest with family about what I can or cannot do. Sometimes I think I have dealt with it better because being on my own I have had to get the cuppa or something to eat (not easy).

The doc is trying to get me to reduce again but I said no and think I will stay on 10mg for a while or until the pain lessens

Apologies for the long post but I felt I needed to today.

[PMRpro Ambassador in reply to joat]

Have you seen a rheumatologist? I'd suspect your GCA is not being managed by the dose of pred you are on and causing PMR symptoms - and far from reducing, you probably need a bit more.

[Mai45]

Joat, I'm not one of the experts but like so many I've found the sudden overwhelming fatigue one of the hardest bits to handle. Think I'm getting on top of them now, oddly enough by giving them a name. I call them my SDORFD moments (sit down or fall down).

When one hits me I just think "oh heck - or words to that effect - SDORFD again" and sit down for a bit with my eyes closed. Doesn't seem so bad when it has a name - and if I'm with someone else at least it makes them laugh

Also, thanks Dorset Lady and PMRPro - really useful to have those links

[joat in reply to Mai45]

Thanks - I like the bit "with my eyes closed". Made me smile as that is just what I do.