Good days Bad days

[Oldman-1]

I`m not long into this very strange nerve problem. I`m quickly coming to the understanding that if I try mind over matter, physically, boy do I pay for it later.

There are times I`m close to total collapse, I feel like a a very worn out Boxing Ring punch bag. Conversely, There are other times which I actually feel good. Still have to see a consultant.

[SheffieldJane]

Pacing is the name of the game Oldman. Short bursts of activity then rest. It's a lovely sunny Autumn day here in Sheffield and I've just been for a walk amongst the beautiful golden trees. That will do me for today, feet up now.

[DorsetLady PMRGCAuk volunteer]

Hi,

As S/Jane says - pacing is the key. Trouble is, on the good days we do more than we should, hence the following bad day!

“Do a little bit, have a rest, do a bit more, have another rest” should be your new mantra!

It does take a bit of getting used to, but it works.

Take care.

[Hollyseden in reply to DorsetLady]

Absolutely agree with do a little bit then rest etc. I find that even just hoovering gets me out of breath and my face is soaked with sweat. Not a good look. Adjusted to this by hoovering before I dress or shower. Lessons learned every day 😊

[Grants148]

I know how you feel Oldman,l thought l would do some gardening yesterday as it was such a nice day,but l am suffering for it today and the preds l take had no effect on all the pain etc,so have had to put my feet up all day. It is the only way really,we have to be careful not to overdo things or else we suffer afterwards,very frustrating when you want to get on with things but have to pace yourself.As for vacuuming the house........

[PMRpro Ambassador]

PMR/GCA is not a nerve problem - it is a vasculitis, inflammation of blood vessels.

The others have said it: PACING!!!!

Here is a link to post about it with some other links:

healthunlocked.com/pmrgcauk......

[Oldman-1]

I`ve looked on Wiki, yes it does say just that. I`ve been a Bus and Truck Mechanic for most of my life. This is a very odd debility. Having been so fit, understanding it leaves me disbelieving what`s wrong, if it wasn`t for the pain which is retrospective, I`d just say it`s old age.

[PMRpro Ambassador in reply to Oldman-1]

"... I`d just say it`s old age."

That is the main reason it doesn't get reported to doctors or doctors fail to diagnose it. Our parents generation just assumed it was rheumaticks...

[Hidden]

Hi Oldman-1, I'm Pastit !

I'm another Old man, 73 years young and trying to make the most of this wearisome disease which I have now had for 3 years I am on 5mg and reducing from 5.5mg using a slow method. Today I feel a bit achy, shoulders and top of legs and I haven't been overdoing the activity, but I make sure I get exercise, I cant sit down for long, I always have to be doing something.

Polymyalgia Rheumatica (PMR) is not a nerve problem as PMRpro has mentioned and has provided you with a link for further details. So we assume that you have definitely been diagnosed with PMR.

PMR is the Master - and you are the Slave, so to speak. You have to follow the rules of combat and do your part in an attempt to lead as comfortable life that the prednisolone enables. You are on steroids for the long haul, at least two years in my opinion if the diagnosis is correct. Many have had PMR for much longer and you never know for how long it will last until you get there.

So getting the balance between correct dose and activity is the aim. Reducing the prednisolone is the plan, so you should have been given some guidance from your doctor at least. I found that I was told that I would be on steroids for 18 months. I look back now and laugh at that, if only it was that simple.

So in summary Oldman-1, once you know what's going on with this disease they call PMR you will find a way forward, it can't be rushed and you will find lots of virtual friends on your journey to provide advice. You will learn how to manage your condition. It does take time, but the outlook is good.

If you have any question, just ask, you are amongst friends.

Pete

[Oldman-1 in reply to Hidden]

I`m not on any drug atm other than co-codamol. I`ve got a meeting on the 13th of Nov with a Consultant Gyno who is going to tell me I`m Fkd. That`s the funny side, I`ll update everyone once there`s a decision made. So long as there`s no amputations ...lol

[Hidden in reply to Oldman-1]

I don't quite understand your thread, but I do hope you get some resolution soon.

[Oldman-1 in reply to Hidden]

Sorry pastit, it`s my sense of humour. I can`t let this pain make me depressed.

[Hidden in reply to Oldman-1]

Oh I see what you mean. I agree with you it's a constant battle 🤗

[Rugger]

Are you still on prednisolone, Oldman? I can't tell from your other posts. If not, that is the drug which will help to control the painful inflammation caused by the PMR, but you still have to pace yourself and not do too much on the 'good' days, as the others have said.

I hope you get to see a consultant soon.