learning to live with pmr

[dillydally1]

hi everyone, I am newly diagnosed pmr age 56. is fatigue normal once commenced on prednisolone, I started 20mg, dropped to-day to 15mg. will this fatigue ease over time. the other day I did lots of cleaning and washing because my mum/dad were coming to stay, I found it really hard work, to the point of exhaustion, I looked that bad all the family were concerned about me, feeling a little better 3 days later. is this normal.? any advice of any symptoms to look out for and ways to live with pmr would helpful and appreciated x

[DorsetLady PMRGCAuk volunteer]

Hi dillydally1,

Welcome to the club, yes feeling exhausted after doing too much is par for the course. You really have to retrain yourself to take things easy -very difficult at times. Do things in short bursts, like one room at a time, not the whole house in one go. And then take a rest!

Even on a day when you feel really good, try not to do too much - you will suffer for it the next day or so.

But it's not all bad news, things do get better, but you cannot rush it. I've been on Prednisolone for two years for GCA (starting on 80mg, now down to 10mg), and it only the last few weeks that I'm beginning to feel almost normal, and can do housework and gardening without feeling like a wet rag afterwards.

Have you read Kate's book about PMR - it's very good from the sufferers point of view and also for friends and family to get an insight into this problem we have, I thoroughly recommend it.

Good Luck, and don't forget - take it easy. DorsetLady.

[dillydally1]

Hiya dorsetlady, much thanks for the info, it will be very useful. great news you are down to 10mg prednisolone and beginning to feel normal again, wishing you all the best for the future x

[Badgergirl]

I agree with DorsetLady. I have learned the hard way to do things in short bursts. My family are coming for dinner tonight so I have already started cooking. I will lie down for 30 minutes after making each dish one at a time. Last time they came I did it all at once and felt so exhausted and ill when they got here and they all told me never to cook for them again. So, I promised this time I would take it easy. I hope I look OK when they get here or they won't come again! So, take it easy too dillydally1 and good luck on your PMR journey. Things do get better over time as you reduce the steroids.

[dillydally1 in reply to Badgergirl]

thanks badgergirl, hope the meal went well and I'm sure you looked ok x

[Annodomini]

I know that when I first started on pred, I felt like a million dollars but had to be very careful to conserve my energy or I would feel like something the cat dragged in. As you reduce, you will still have to look after yourself and not overdo it. It's a delicate balance between maintaining a degree of physical fitness and not wearing yourself out. Good luck.

[dillydally1 in reply to Annodomini]

thanks, it seems as though life has to change quite a lot. I'm going to have to be very strict with myself x

[PMRpro Ambassador]

Read this:

butyoudontlooksick.com/wpre...

You may feel full of beans when on pred - it doesn't mean you are cured! The pred is to control the symptoms - it doesn't have any effect on the underlying cause of those symptoms, an autoimmune disorder that makes your immune system attack your body as if it were "foreign". One of the main symptoms of autoimmune illnesses is fatigue that doesn't improve with going to bed and sleeping! In PMR your muscles are unable to tolerate exercise and a small task will have the same effect as a real hard workout and your muscles will protest. So when you overdo it you will take ages to recover and Christine Miserandino explains what that means for everyday life.

When I lived in Germany I learnt a few important lessons: being together with family and friends is the most important thing - not that the menu was home cooked and cordon bleu standard!.And a clean kitchen is good enough - if they don't like the dust they can get the hoover out themselves. A take away or going out is just as good as you having cooked. Or even sandwiches. My favourite mantra is "Dust is very patient - it will always wait".

And when you reduce - take it easy for the week after if you go in one step like that. But anyway, 5mg at a time is too much for comfort. A reduction should never be more than 10% of your current dose - a drop of 5 at 20 is 25%. I have been posting a slow reduction of a type that has worked for everyone who has tried them so far, even doctors like the slow approach. It avoids the risk of steroid withdrawal pain which is very similar to PMR pain resurging and it is difficult to tell the difference.

[dillydally1]

really good advice, thank you. I read but you don't look sick, what a good way to explain things.

[Hidden]

DVD - 'You Are Not Alone' - made by patients for patients newly diagnosed. Helps you to understand PMR & GCA and also helps family and friends to understand, that although you look well you are not. Follow this link pmr-gca-northeast.org.uk/dv...

[dillydally1]

thanks smoky I will order the dvd x