Out of the frying pan and into the fire! - PMRGCAuk

PMRGCAuk

20,119 members37,700 posts

Out of the frying pan and into the fire!

15 Replies

First diagnosed with fibromyalgia, looked at all the information about it which frightened me to death. Saw the registrar at next visit to clinic who went through everything with me, then announced that I have polymyalgia and that he could do something about that. It was like a dream come true, a stay of execution. So been on the pred for 2 weeks (yes I know all you long timers) no miracle, but not much pain, very tired after light morning housework, that's it for the day. Reading this social network the reality is dawning, it's a long haul illness, looks like I won't be better by Christmas! Big respect for you all with your self help advice and humour, as I begin my journey looks like I will need all the help I can get. I will walk my dogs and maybe some day get back to my hobby of running my dogs in agility comps. xxx

15 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi ChrisMcT,

Welcome,

You are correct in that you will be in for the long haul, and no you won’t be better (meaning over it) by Christmas, but hopefully on the right level of Pred you will feel better (meaning not in pain) by Christmas!

Take care.

PMRpro profile image
PMRproAmbassador

You sound to have got the measure of the situation!

However - you will FEEL better long before Christmas so I wouldn't say you were in the fire! Fibro is far worse - same problems, no way of improving them. Pred has its pros and cons - used properly the majority are pros.

Leave the housework - do the things you enjoy. That makes it all so very much bearable. I used to have a cleaner - now I have a Roomba and a slightly dusty home. Who cares...

SnazzyD profile image
SnazzyD

Welcome. The early weeks are difficult digesting the diagnosis and the dawning realisation you are getting. It will get better when you become more accustomed to the Pred and your pain improves. It is much easier if you roll with it and not ty to fight it by trying to live life like you did before PMR. Expect tiredness and muscles that protest when you exercise too much, so pace yourself. The go slow life has taught me many things and opened other doors, it’s not all bad once it is under control.

SheffieldJane profile image
SheffieldJane

Hi ChrisMcT and welcome to the forum. I hope you find it to be the life saver that so many of us have!

Fire away with your questions as they arise! You will be helped to navigate this period in your life.

Best wishes Jane, PMR 2 + years 7 mgs of Prednisalone .

Welcome chrismcT...

I have fibro and PMR (15yrs and 2yrs) and I can tell you that despite the occasional flare at least pred manages the symptoms of PMR. Hopefully as the pred helps you will feel better, as I am sure you must have read by now, the illness isnt cured by the pred. The key thing is to pace yourself. As pmrpro says...leave the housework and use the energy you have for something that brings you joy. Tapering is usually a big discussion point. Slowly slowly is the way. Most of us can probably tell you if at least one flare due to taper being too fast so I hope you don't join that club!!🌻

in reply to

My doctor reckons I'll be off pred in 6 months and cured!

piglette profile image
piglette in reply to

Does your doctor know there is no cure for PMR as yet, PMR can go into remission but it is still lurking there asleep. Also the PMR decides when you will be “cured” not your doctor.

in reply to piglette

Bit of a worry, yes. Husband says go with the professionals they know what they're talking about but I'm not that sure.

PMRpro profile image
PMRproAmbassador in reply to

He does does he? How ignorant on all counts...

And sorry Chris's husband - there are a lot of professionals who don't know what they are on about when it comes to living with a chronic illness in general and PMR in particular...

in reply to PMRpro

Yes I wouldn't mind but Mike takes no notice of the things the doctor says to him about his problems. Everyone I speak to seems to know someone with PMR, I wonder if they hear the poly and connect it with something else. Xxx

PMRpro profile image
PMRproAmbassador in reply to

Don't be silly - he's male... ;-)

What do you SAY? PMR or polymyalgia rheumatica? If it is the latter they only hear the rheumatica - and everyone has rheumatics. Just like they don't know the difference between rheumatoid arthritis and "arthritis".

in reply to PMRpro

I am now saying 'chronic arthritis' it's easier to say anyway! xx

PMRpro profile image
PMRproAmbassador in reply to

That will just mean they ALL think they know what it is and a paracetamol will cure you!

CT-5012 profile image
CT-5012

Hi and welcome. I have PMR and GCA, two years three months now tapering from 9.5 to 9mg of pred very slowly. Everyone here will tell you to take it easy do one job then rest, do something you enjoy, sitting in the garden watching the plants grow is now a valid hobby! Cured in six months 😂😂😂😂😂

Lots of good advice here there are no stupid questions just help and occasionally humour. All good wishes.

in reply to CT-5012

I'll ask the doctor how many PMR cases he has treated. I have more confidence in the people who are experiencing this deasease.

Good day today, sunshine, great nights sleep, time to face the allotment, I know, just for half an hour!

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