New to Forum | Arthritis Information

Just saying Hi. I just joined this forum and although have been reading here for a while have decided to join. I'm 69 and diagnosed with PMR for a year now. I started on Prednisone at 20mg and even after a year am still on 10 (sometimes up to 15 when I have a flare up). My biggest concern is the accompaning fatigue and inability to do anything without feeling totally exhausted. I'm not sure if its the pills or the PMR. Then the weight gain didn't help either I am sure. Have tried mild exercises but if overexert myself -end up in bed for a day. Not sure if this is a normal occurance or not.ValerieJoan

visit www.pmr-gca-northeast.org.uk.

There is an article on how to 'cope with fatigue'. Exercises designed for PMR patients and how to 'go with the flow'. People's stories and medical advice.

Worth a visit.
I dont know if I can add anything pertinent but I do remember once PMR had come to stay for a few weeks as just thigh pain and some neck pain thats when the fatigue started to set in Im only 58 and at that time was quite active at the gym etc worked full time I agree the fatigue comes on with no warning or just prior to a flare (also unpredictable) I just ride it out and baby myself once I feel better I have to give myself an extra nudge to get to the gym or do an extra chore I know from being a nurse if you dont exercise you feel more fatigued and I have noticed that as crummy as I feel sometimes after work I push myself a little to get to the gym (and the heated pool which my body loves) and I do feel better and it boosts my energy level and stamina so coddle yourself when you have to but work that body when you canHi ValerieJoan!

'Fraid so! Very normal - I too have had diagnosed PMR for a year now but had had it for about 4 years before. I assume that you are now retired? I know you tend to work longer in the USA than we do in Europe. The fatigue is very much a part of PMR and you just have to learn to know your limits. Try to take note of what you did the day before you feel bad and the next time stop sooner. Learn to say NO - don't let people talk you into doing something you know at the back of your mind you shouldn't. I know it's difficult - you don't look ill and people just don't understand - they have to learn, the steroids are just helping you to have less pain, they are not a cure.

Like Parker I find I am less tired after exercise - I know it sounds stupid but I suspect the exercise gets the blood flow to the muscles going and they get more oxygen - which is part of the pain and stiffness in the large muscles in PMR. If you can't manage other other sorts of exercise, try aqua aerobics as your body is supported by the water and that makes it easier on you. I also did Pilates and Iyengah yoga which helped the stiffness. Even going to the pool and just walking in it against the water is very good exercise - everything you do in water takes 7 times the effort but your joints are protected and supported. They have just started using jogging in water for group classes in Germany as it has been used for some time for athletes after injury! And, yes Parker, I do wish I had a hot tub or sauna - brilliant!

anyway - good luck, keep in touch and someone will come up with an answer if you ask a question. Go try Mrs UK's site - it's really helful too,

MrsE

Your steroid dose sounds quite reasonable after a year and your PMR sounds to be still quite active - some people reckon it burns out after a couple of years but I think that is far from the norm and some people take steroids at low doses for years. Don't try to go down from one dose to the next in a big jump though - I don't know what tablets are available to you, we have 1mg tablets as well as 5's and 2.5's so we can go down 1 mg at a time or even a half but never try to go down more than 2.5mg - that's too big a jump for lots of people and you will feel worse again. And it is difficult to tell whether it is the PMR coming back or because you are suffering from steroid withdrawal.

BTW - I've got mincemeat brain this week again (PMR flare strikes) hence the sign-off inthe middle of the post after I'd gone back to add something! Idiot!

MrsE

Thanks all for your comments. I've just got back from doctor. ( I live in a small town in Newfioundland Canada - and have to travell 450 kms to city to see specialist). Thanks for information that I got here through this forum and the uk forums I was able to inform the doctor of some of my knowledge (which sadly I'm not sure he had). Anyway we are going to start reducing the Predisone 1 mg at a time and see how that works (instead of trying the 5 mg change which obviously didn't work for me). As I am unable to avail of doing exercises in water which has been recommended (no pool in our area). I am going to try and increase my walking and low impact exercise. Thanks again and will keep you posted.VJ, your fatigue may definately be from trying to taper too fast. If you read my post about listening to your body while tapering you will see what I went through. My biggest complaint was constant overwhelming fatigue. It is better now since I am back at 12.5mg. When I tried to taper to 10mg one day then 12.5mg the next and so on, my body rebelled. Hopefully next time we will try 1mg at a time.

Glad to hear you are feeling better!