New pmr sufferer

Wenjemima - Hello and welcome although sorry to hear of yet another PMR sufferer.

Fatigue is one of the horrid symptoms of PMR as I know everyone on this site will agree. I so sympathise with your feeling of not wanting to give in but I'm afraid that is exactly what we have to learn to d. We often use the expression \"go with the flow\" so that if you're having a not so good day then it's best to give in in order to restore your energy levels. When you are having a good day it's important to really pace yourself so that you don't once again overdo it. It's a steep learning curve following diagnosis but you soon discover that it's a case of listening to your body in order to achieve the best quality of life that is possible with PMR.

Very best wishes and do hope you keep in touch and let us know how you are getting on.

MrsO

Wenjemima

Its difficult to change your lifestyle.

Visit www.pmr-gca-nprtheast.org.uk

Go to Useful Information and there is an article on Coping with Fatigue.

Quite a few of us found it very helpful.

Mind the rest of the site is worth a read as well.

Good Luck and keep on coming back to this site for a moan and a groan and a laugh as well.

OOPs

typing error

www.pmr-gca-northeast.org.uk

So Sorry

Thank you to Mrs o and Mrs K I have printed out the article on Fatigue and Im sure I will find it helpful Wenjemima

Hallo Wenjemima. Iam sorry and pleased to hear that you have joined us. None of us would wish PMR on anyone but, onthe other hand, if you have to have it this site is the place to come.

One of the interesting but also inconvenient things about PMR is that there do not seem to be any 100% rules either between sufferers or for individuals on different days and occasions so it really is a case of listen to yourself on a day to day basis as Mrs.O has already said.

I and one or two others who post am in the middle of a second episode of PMR. First time around I had a text book experience. Took three years to taper to nil Prednisolone but with few set-backs and never in that time did I experience any fatigue at all. Got through an enormous amount of work of all kinds. Full of beans but could not sleep. Some slight weight gain and some hair loss but it all resolved so not to woory about that.This was eleven years ago which might have something to do with it!

This time, after five years symptom free, I thought it would all follow the same pattern. Wrong.

Steroids took the pain away but jazzed me up so much that I had to stop taking them for a while. Then the pain got too much so am now back on them ( Since ten days ago. ) Again, blissful pain relief. While taking the steroids I again never had any tirednes; quite the reverse. But when I stopped I was absolutely wiped out for part of almost every day. Now my problem is trying to adjust my activities and eating to take account of the swings in energy levels. Several people on here are very generously giving thought and time to suggesting possibilities and I thank them all.

Good luck and keep coming back Betty

I was like Betty, not feeling fatigue very much, but oh boy, I just wished I could sleep!! I spent months and months awaking at around 2am and then not going back off. Now I can't go off and really find I want to sleep at about 6 in the morning, just when it is time to get up. I get a weary feeling, but I think it is more a sort of fed up feeling in that I can't manage to do what I want to do - like I can't manage a shopping spree witout additional painkillers, but then find the next day quite a lot of stiffnes. My symptoms still vary from day to day despite steroid treatment. I think someone hit the nail on the head by saying this PMR goes when it wants to! All the best with pacing yourself - it will gradually fall into place, what you can and can't manage to do in a day, and how often to rest etc.

First a procedural query. How do all of you who ( as I do ) post under multiple headings answer and respond to the right person/post?Apologies if I address/thank the wrong person. Here goes then

Eileen: high protein lower carbs: bacon and egg breakfast??? I couldn't. Breakfast is two very large spoons organic yoghurt ( Mrs. O I think does the same ) then pred. then more yog with some Jordan's muesli. Has plenty of oats, raisins and nuts in it and I love it. I've never needed the coated ones. Didn't know they existed

Wholemeal bread. I take your point about the need for the real thing. The best I can do is hand-make my own as I have for more than thirty years as I always hated the shop stuff that dissolves before you can have a chew. I use Doves Farm organic wholemeal and I think it makes a pretty robust loaf. Have just found a recipe in Elizabeth David's Bread and Yeast Cookery which uses a proportion of oatmeal. Making some on Friday. Will let you know whether this helps to stabilize the blood sugars if that is, indeed, contributing to my swings and panics; Also whether it is fit to eat!

I've never given much thought as to what to eat with what ( Hay Diet ) It seems very contrary at first sight. No poached egg on toast?; no potato salad with ham or cold shicken? I know that my diet is very varied. Not very much meat apart from chicken but lots of different home grown veg, plenty of fish. Only have dessert if there are guests ( and they have been thin on the ground for the last eighteen months. All I could do to feed us! ) Do enjoy home made cake and cup of tea PM and a Famous Grouse ( or Highland Park if someone offers ) before supper. Must have some vices. As I have only needed the doc for allergic reaction to stings and a suspected but non existent gastric ulcer (unconnected with PMR ) until PMR and my weight never varied by more than 5 or 6 pounds from nineteen to sixty eight I felt I wasn't doing too badly nutritionally. Even with 30mg pred I just had a moon face ( prefer chipmunk cheeks on second thoughts )for a few weeks while dose was reduced.

My reactions to the pred. seems very odd. If I set to immediately after breakfast and do something VERY energetic like steam clean the kitchen floor (yesterday );prune a huge shrub and drag to bonfire ( today ) this seems to use up all the excess cortisol if that is what it is and I stay calm and sensible. If, though, I slob around with the Sunday papers and natter to the family on the 'phone, by mid morning I am a jibbering weak legged heart thumping wreck. No wonder I don't put on weight!

Thanks again to everyone. Betty

BettyE

You do not need to apologise on this site - we all suffer from CRAFTs as well as dyslexia KO.

That is what is so great about it.

The Moderators are laid back, if you have a problem they help

Folks star each other and there are no kicks.

Just help help and help.

Joining in a bit late as I have been enjoying the Spanish sunshine !!

With my first bout of PMR which went with no blips in 2 years I had quite a bit of complete exhaustion and I do find it very frustrating This time around I have now had it for 18mths and had lots of ups and downs but not really so many days of complete exhaustion so very strange really

There seems no real pattern to this illness but I do find the exhaustion sometimes makes me want to get on the roof and scream !!