Feeling well: just been reading posts about... - PMRGCAuk

PMRGCAuk

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Feeling well

suzieh profile image
suzieh

just been reading posts about dizziness, feeling weak and faint. I remember those feelings- awful especially thinking this was what I'd be like forever. I've been off pred for 2 years now and no relapse. Feeling well and energetic most of the time. I get an occasional day lacking in energy and have learnt to do nothing much on those days apart from resting

Hope this post encourages others- you can recover from PMR and steroid treatment and live a busy life again. As I've said before this website was the main thing that kept my hopes high. Lots of advice and answers when you need them

20 Replies

Woo hoo!

Thank you suzieh that is just what I needed to hear right now, sofa bound and fed up. I wonder, did you also get breathless upon exertion? This is an unwelcome addition to my miseries today.

suzieh profile image
suzieh in reply to SheffieldJane

Don't remember feeling breathless, just weak, dizzy, tired, no energy. Knew the steroids controlled the pain but blamed them for feeling unwell a lot of the time. Get Dr to check out breathlessness

SheffieldJane profile image
SheffieldJane in reply to suzieh

Thanks susieh, the doctors are well and truly on to me.

Hello SheffieldJane. I get breathless too and don't know whether to blame the pred or PMR or just me. Sometimes going up a single flight of stairs seems like climbing a mountain. Even a slight slope gets to me and my legs just want to buckle, not a good look. Ho hum

Hi Hollyseden, I am currently waiting for an ultra- sound at the end of the month because there is a question mark over whether I have Stenosis of the Aorta. This can be a complication of Vasculitis. Please ensure that your heart is healthy. My breathlessness is a new symptom. So report the symptom, mine was picked up by a very vigilant Registrar who ordered an MRI scan.

I'll mention it next week when I'm back at doctor for BP monitor results 🙄

PMRpro profile image
PMRproAmbassador

Long may it last!

suzieh profile image
suzieh in reply to PMRpro

I'm always aware it may re surface- know to rest when feeling tired. Dread the day it may reappear

Try to eat well, keep fit and happy- maybe I'll be one of the lucky ones

Oh suzieh - I so hope that you're speaking the truth because the thought of being this way forever is unbearable. What on earth would be the point? Such a waste of life - mine and everyone else it affects. :(

suzieh profile image
suzieh in reply to Bennifred

Keep positive and use the very slow method of reducing. Stay on the same dose for a while if you need you Treat yourself well as much as possible and hopefully you will recover too

Bennifred profile image
Bennifred in reply to suzieh

Thank you, susieh.

PMRpro profile image
PMRproAmbassador in reply to Bennifred

It is possible for the majority of people to live well with PMR or GCA until they go into remission. I have had PMR for nearly 14 years, it didn't stop me altogether when it wasn't treated (the first 5 years) but since being on pred there isn't a lot I can't do. Except the housework - so that is fine...

Bennifred profile image
Bennifred in reply to PMRpro

I suspect that the reason I'm having a tough time is the combination of different conditions I have, the treatments for which work against each other, it seems. :( In addition to PMR I have PPMS (primary progressive multiple sclerosis) and AVN (avascular necrosis).

PMRpro profile image
PMRproAmbassador in reply to Bennifred

Does the pred not help the PPMS? I know the AVN is a problem.

Bennifred profile image
Bennifred in reply to PMRpro

There are no disease modifying drugs (DMDs) for PPMS, and unlike the most common form of multiple sclerosis (relapsing-remitting or RRMS) there aren't relapses in PPMS. RRMS relapses are often treated with steroids, you are correct!

suzieh profile image
suzieh in reply to PMRpro

Is PmR always going to be something I am likely to get again? Remission suggests it is. Must say I still have pred in the cupboard - and still in my holiday bag just in case of the awful pains starting again

SheffieldJane profile image
SheffieldJane in reply to suzieh

Oh dear Susieh, this is in reply to you saying "Is PMR always going to be something I am likely to get again?"

Your post was all positive and encouraging to others and it seems that we've all combined to drag you down. SORRY!

As I understand it, this is a disease that burns itself out in most cases. You may well have slain ( slayed?) the dragon and its gone and you just need to build your strength up.

I have learned from this though and I won't make the same mistake again. Just about all my recent working life was about helping people in unhappy or even dreadful situations. It was as if I was a magnet for misery and stress and when my own stressful situation struck my body said enough!

I am going to be frivolous from now on and seek out happy light fun. Perhaps I could be a disgraceful old lady?

PMRpro profile image
PMRproAmbassador in reply to suzieh

suzieh: Don't forget to check the expiry date!!!

The potential for it to hit again is always there - but it isn't really very common for it to happen more than once. When it DOES happen it can be totally different from the previous time.

Great to read about your progress. Gives us all hope and something to look forward too. Thanks for that 😊

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