learning to live with GCA/PMR

[bookbear68]

Hi everyone

I've never joined an online forum before but the PMRGCAuk helpline said this was a good one so here goes. I was diagnosed with GCA and PMR in late August this year and am just about starting to feel more like myself now that the symptoms are being controlled with steroids. So I'm starting to find out more about my condition and how others have coped with it. My situation is complicated by having had a major hip fracture 15 months ago and surgery which then failed and had to be repeated. Its been a long recovery so far and I don't know what the future holds in terms of long term mobility. . I am still housebound and the GCAand PMR diagnosis has made it difficult for me to progress the walking and exercise I need to make any kind of decent recovery from my hip fracture. I also have serious osteoporosis. So a pretty shit 15 months but I am determined not to give up.

Would love to hear ways that people have found to deal with pain and the up and down nature of the conditions we share.

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

Sorry to hear about your hip….but hopefully now the second operation has been a success you will be able to exercise it enough to help… many have had replacement and recovered well. … ok GCA and PMR may make exercise a bit more difficult, but you don’t have to stop it completely just be more careful and build it up slowly over time.

You might like to have a look at this intro post -

healthunlocked.com/pmrgcauk...

And also these links about others journeys etc - lot if information there - so don’t try and cram in too much too soon - take your time to read things - if there us any post that yiu think will be useful just save it.. then you can always find it again.

GCA-

healthunlocked.com/pmrgcauk....

PMR-

healthunlocked.com/pmrgcauk...

… and remember if you are concerned about anything, just ask - you’re bound to find someone who been the through the same.

[Merryfield]

Napping.

[Sharitone]

Prioritising like crazy!

[PMRpro Ambassador]

Above all - take the medication you NEED. Which may well NOT be what you WANT to take. When you are on ENOUGH pred, the pain will be much improved and allow you to do things you should be doing.

Sharing a rant/whinge on here helps too because they is almost certainly someone who has been there before and can empathise. Even if it doesn't always feel like it we DO "get" it unlike others who haven't walked the walk - including doctors.