Newby with fatigue looking for basic info what to expect
Posted , 10 users are following.
Hi again,
Background; I was diagnosed with PMR about 2 weeks ago and am on 20 mg prednisone daily. I had a follow up visit to GP and his plan is to keep me on 20 mg daily for 1 more month th on reassess. He also cleared me for exercise with caution to ease into things.
Fatigue has been and continues to be a problem.
Is fatigue typically random or tied into activity level?
Does yesterday's activity cause today's fatigue or is it more immediate?
Also is there a way to search only the PMA discussion topics? the search icon at top of page throws me back to all topics.
Thanks for any and all advice,
Hazel
0 likes, 10 replies
garine1990 OregonHazel
Posted
Hi Hazel, I wouldn't recommend exercising randomly like you did before. Ask for physical therapy and they will teach you how to move so as to not hurt yourself. Yes, if you really exercise hard or clean your house from top to bottom you will feel it the next day. You might feel great while you're doing it and only realizing you overdid it the next day. Fatigue is both random and tied to excess exercise. You have an auto-immune disorder that causes the fatigue and there nothing you can do about it either. There is light at the end of the tunnel but you have to slow down and smell the roses. 20 mg. should have made you feel more comfortable. It never took all my pain away but it was an amazing relief from most of the pain and stiffness. I've had PMR for 3.5 years and I try not to forget the intense pain so I can be thankful for the sort of normal life I have now. It's a good idea to stay on 20 mg until you feel an improvement and your blood work also improves. One to 2 months is normal. Don't reduce fast no matter what the doctor recommends. Take it slow and listen to how your body reacts. Good luck! Garine
OregonHazel garine1990
Posted
thank you Garine, I know I have a lot to learn about PMR. I naively read up the basics then made myself a plan how to get active after 8 weeks of lazy chair watching my BBC summer pass by.
Obviously my plan isn't working.
I much appreciate you answering my questions.
I asked for a physical therapy referral but my GP didn't think it would be useful. I will ask again next visit and just try to roll with it till then.
If I over do and get pain next day am I damaging my muscles or am I delaying my recovery?
garine1990 OregonHazel
Posted
I don't understand your GP. How can physical therapy hurt? It will help you gently stretch your aching muscles and know how to do it without overdoing it. My physical therapists were wonderful and sometimes explained things in more detail than my doctor ever did. No, you won't be damaging nor delaying recovery just feeling s****y for the day. You have to get used to the fact that your body has it's own mind now and you have to listen to it. I learned to slow down a lot and enjoy the moment but that's after I went through the stages of grief. For myself, I can say that it has made me into a better person and realizing that this is not such a bad disease considering the others out there. For people like us, who have been very active, healthy and in control, it's very hard to slow down. Are you familiar with the HealthUnlocked forum? You can learn a lot there too.
ptolemy OregonHazel
Posted
It is really important you get a good physical therapist who understands PMR, there have been some horrific stories of bad ones. I use an osteopath who I think is wonderful, it is just getting the right person.
jones10939 ptolemy
Posted
In the UK I had an appointment with an osteopath - he told me that I was the 4th retired OT (Occupational Therapist) he'd taken on. My response was that was remarkable as OTs have always been in short supply; his response was that the others had said that the process seemed to suit better than physiotherapy (no mention what their conditions were).
EileenH jones10939
Posted
They are two totally different procedures - horses for courses. And I needed both.
nick67069 OregonHazel
Posted
Typically you would stay at starting dose for 6 weeks or so. When you start reduction, do NOT reduce more then 10% of the dose. Use some of the gradual taper plans that combines new dose and old dose on alternate days... It is called DSNS plan and it goes like this
1 day new dose , 5 days old dose, then,
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 days old dose
then you start taking more of new dose then old...
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
switch to new dose from here on...
About exercise... PMR like when you move, so light exercise is desirable. It all depends what shape you were before PMR. It is best to start slow and do whatever sport you were doing before. Or start with walks and stretches. First short walks, then gradually make them longer. If you can, it is better to walk 2 - 3 times per day shorter walks then one long one.
PT can help or not, it depends on the office which is doing and if they are familiar with PMR. Some people say it helps, and some felt worse after PT.
EileenH OregonHazel
Posted
Fatigue is an inherent part of almost all autoimmune disease - the immune system has gone haywire and is attacking body tissues as it is unable to recognise them as self. This tends to make you feel as if you have flu on a permanent basis. The pred rarely makes much difference to the fatigue - except at higher doses it can make some people feel like the Duracell Energiser Bunny - so they rush around doing what they've not been doing for weeks prior to diagnosis until they (often) crumple in a heap.
Not only exercise but also activities in general are a problem because your body seems unable to signal you have done enough - waiting until you hit a brick wall of fatigue. When it hits I feel nauseated and all I can do is lie down and (hopefully) sleep. After a night's sleep I am fine. But exercise needs a different approach - you will not notice at the time but the next day it will hit if you do too much and you will probably develop DOMS which will be out of proportion to what you were doing and will take far longer to resolve than usual.
You can get to a fair level but you have to start from a very low level and build up very slowly over weeks or even month to get to the stage you used to over a few weeks. Plenty of us will explain if you want to know what we mean .
The search function on here is hopeless - I find things more easily using google!!! You can go to the Homepage
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
and then scroll down through the hundreds of pages looking for post titles. When I joined this forum over 10 years ago I read every single thread on this forum before I found the courage to reply to a question I knew the answer to. No-one could do that now!
Your GP is probably right, PT isn't very helpful for a lot of PMR-ers unless they have a knowledgeable therapist and many aren't. Repetitive actions are poison in PMR. Start by going for a walk and build up from there - and start with a distance that doesn't leave you sore next day. Always have a rest day between exercise days at first - you will get to the stage where you can do something everyday and it won't take long. I did aquafit and Pilates after for years with PMR - at the time I wasn't diagnosed so they kept me mobile and upright. And now the physio here does deep massage and myofascial release. No that I like!
jones10939 OregonHazel
Posted
For the benefit of others who may be reading this thread I must point out that OH (diagnosed PMR/GCA 12 months ago and commenced on 40mg pred pd, now tapering from 9 to 8 on one of the not so slow patterns) has continued to take his classic tractors to shows and to ride his powerful motorbike in good weather.
He can be more tired than he used to be and his "get up and go" is somewhat slower in getting underway but apart from an occasional day of feeling "shattered" he says that he couldn't say that he was chronically fatigued and there will be many who don't even look at the forum.
Thee are many individual variations in the pattern.
marike57008 OregonHazel
Posted
My experience is similar to the dear husband of jones10939. My life is very similar to what I used to do minus going to Crossfit. I do get tired as I did before, the difference being that now I usually take a 15 min nap to perk up again. And, very importantly, I take care to make sure that I get enough sleep. I am also on a low-carb, anti-inflammatory diet and I think that helps my energy.
You can definitely exercise but it would be wise to start a program from the beginning and listen to your body. Certainly moderate walking and yoga could only help until you are able to find a physical therapist or OT.
All the best in this new journey.