Recovery

[cmjdexterbunny]

It can burn out. So to encourage everyone l would like to describe my progress and improvements. I was diagnosed at 54 with pmr and it was a real blow. I have fought each steroid reduction by pushing through (mostly) and gritting my teeth and moaning. Sudden improvements about 6 weeks ago with smooth transition to 1.5 mgs. Tiredness of 18 months has vanished and sore eyes gone. I can move swim. And wait for it......run up and down stairs. My doctor says it's one of the fastest recovery she's seen. To sum up l am not gloating please don't think that and l know there'll be upset and downs. But l just suddenly feel normal and realise how awful l felt?? Good luck every one. Xx

[DorsetLady PMRGCAuk volunteer]

Long may it continue, you seem to be one of the lucky ones!

[markbenjamin57]

Greetings cmj

Thank you for your thoughtful Post. It's always encouraging to hear Good News stories here, and most people in this community love to hear them. It gives all of Us Lot something to aspire to - even during the tough bits.

You sound relatively young to get done-over by PMR at age 54: but as the Aunties here say, it's not unheard of! I had my PMR initiation ceremony at age 57... Ba, Humbug!

As for a relatively 'quick' recovery (in PMR terms): yep, I think your GP is right. Maybe a combination of your age and relative fitness have something to do with this? I've also read here that there might be different forms / strains of PMR, with differing intensity and timescales to burn out. Who can know? PMRpro seems to be the expert on this one...

Main things is: you've hit the nail on the head in saying that it's only when you feel better (symptoms-free / relatively so) that you realise how awful you've felt - and for so long. When PMR symptoms give you a break, even if temporarily, the difference is night and day, as I well-know. And, yes, it CAN burn out - even if slowly and in fits and starts.

Best wishes - and please keep us posted on your Journey

'Uncle' MB

[SheffieldJane]

Actually that is quite encouraging. I would still go carefully in your shoes. I hope your recovery is permanent!

[StillBreathin]

Congratulations, that is fantastic!! Hope it sticks.

[Daisychain12]

Thank you so much for sharing this ray of hope xxx. So very delighted for you darling xxxx

[pmrkitty]

Thank you!!! You have given all of us a little hope for a light at the end of the tunnel.

[powerwalk]

Oh sore eyes!!! Very interesting - I get a lot of that. Best of luck to you!!

[3daysinjuly in reply to powerwalk]

I have that, too. Almost like that full feeling in my eyes.

[Suet3942]

When were you diagnosed. ?

[Valnvaughan]

And good luck to you.

I am reducing from 2 to 1.5 mg Pred per day after 3&1/2 years. And yes, I FEEL better.....but who knows? I can walk a bit ( more restricted due to 2 hip replacements than PMR), I can swim or exercise in pool, I can drive an automatic car. I can even help with decorating. But I get tired and need lots of rests. I have “ jelly legs” after 1 year of wheelchair use after 2 years of stiff movement with PMR......so am really happy. Just know I have to be careful.

I am happy for you.....Enjoy your remission, I hope it lasts.

Will you be keeping a Pred supply handy just in case.....I will, when my time comes.

A bit like depression.......one always fears IT returning.

I am encouraged as I have weathered sad family news as 2 of my dads brothers have died in this month.

But cheered by the prospect of family arriving for Christmas and actually wanting to MAKE things....food, decorations, pretty gifts.....that’s something I only tolerated these last 3 years. HAPPY DAYS!

Also for next year.....we have bought a share in a Dutch Barge cruising the French wayterways. 🛥 Valerie

[Marijo1951]

Thank you for this. I'm having a bad day today. I need to go out but haven't the energy to put my walking shoes on. I have to believe I will get through this. Your story gives hope.

[Marilyn1959]

Fabulous uplifting post. Thank you and long may you be fit, well and enjoying life.

[Jackoh]

So pleased for you. Long may it last!!

[PMRCanada]

It is so inspiring to read your post. My PMR journey started at age 56, next month I will have one year in.

You must be so relieved and excited!! Yes, looking back at earlier times (for me pre-diagnosis for 5.5 months), I am struck by what I have survived during those dark, scary, painful days.

May I ask, how long did you have PMR?

Thanks again for bringing us some cheer and hope today!

[Hollyseden]

Great news. Lovely to hear success stories