Posted , 15 users are following.
Since prednisone treatment, my PMR switched from pain to severe, daily exxhaustion. Seems there are no pills for that. Some suggest forced exercise. That's like telling someone with flu to exercise. I have occasionally forced myself into some chores and nearly collapsed from the effort. The condition is not only debilitating, it triggers bouts of mental anxiety. Has anyone found any form of relief?
0 likes, 17 replies
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constance.de ron25099
Posted
Morning Ron. The quick answer to that is 'NO'. Pain we can all cope with (well most of the time), but 'fatigue'?! I've never found excercise helps, inside or outside. Exercising when extremely tired seems to be a paradox to me. If you can find an answer let the rest of us know!!
maid_mariane ron25099
Posted
Hi Ron
I find exercise does help overall but exhaustion i know is just debilitating. I've personally just recently over done it with commitments etc. during a tapper and i slept for 2 days straight and still exhausted and last night exhausted and couldn't sleep.
I wish i knew the answer. My muse for exercise is swimming and i do find if i get there when I'm tired it does help my overall feeling. It's getting there.
Mariane
constance.de maid_mariane
Posted
I agree with you Marianne, swimming is the only way I get relief from pain and tiredness - it's the getting there, undressing, showering, swimming, showering and then dressing again!! Exhausting!
We now live in an apartment, no bath tub and only a balcony - no place for even a hot tub. Ah me!
karenjaninaz ron25099
Posted
Ron, when I was first put in pred, 15mgm, I was so relieved that I took many naps. I find exercise, even just a little, with frequent rests help. I started taking B12 because I needed acid blockers for pred bellyache. We do not absorb B12 in a reduced acid environment. This is with my doctor's approval. Since then I do not have that awful fatigue. I am back up to 11.5 mgm because my arms started hurting at 10.75 but I will start slow taper soon. I take 2500u B12.
crash1949 ron25099
Posted
Oregonjohn-UK ron25099
Posted
So many of the replies you have received ring bells!! I have only recently had some relief in the fatigue and vision problems but I am down at 1.5 mg after 2 years. There is a mental aspect as well, I tried exercise and soon found that if I overdid it, even by a small amount, I paid for it - had to learn that post-PMR I had to really slow down and pace myself. I believe little and often is far better than pushing yourself. I was fit and active and didn't want to slow down as I thought I was 'giving in' to PMR - bad move !!
Anhaga ron25099
Posted
I suggest the first step is acceptance. Please do not force exercise. It sounds like you try to do too much. Most of us have learned the hard way that the old way of doing things won't work any more. In my case I'm much better with "little and often". So instead of a day cleaning the house, or going for a really long walk, or something else which I now find arduous, it's doing one household duty, then a break. Maybe I do more later, or maybe not. Or going for several short walks thoughout the day, or perhaps one in the morning and one in the evening. I've also found that even pleasureable things like lunch out with a friend can be tiring and require the same amount of downtime as vacuuming the house does!
lodgerUK_NE ron25099
Posted
. Use your search engine and on PMR GCA north east there is a whole page of exercises designed for PMR.
erika59785 lodgerUK_NE
Posted
Gentle exercise like "gentle yoga"--- not the regular challenging yoga--- has helped me since I started 2 months ago. In class we relax first with quiet breathing and continue with gentle yoga movements mainly on the floor. A calming experience after moving certain muscle and joint parts which are challenged by PMR.
ron25099
Posted
This is a reply to ALL of you and the many reasonable suggestions. First, it's comforting to hear what are "normal" symptoms of PMR. Sounds like we simply have to accept the condition and respond carefully and not overdo, and Karen, I'll check out the B12 usage. Will also compare the PMR exercise suggestions with what I've been doing. My rheum dr told me the exhaustion has nothing to do with PMR. I told him to check out you folk on the list. Don't know why I'm paying him instead of you people. Thank you all for responding! I guess we need to just take each day at a time!
- Ron
Anhaga ron25099
Posted
Does your doctor have any other ideas about why you may be so exhausted, if it's nothing to do with PMR or, by extension, pred?
How is your diet these days? Many of us have found that giving up most refined carbs and sugars is really helpful, and eating lots of veggies and high nutritional value foods is good. GFor example I used to have a big bowl of cereal (whole grain, organic) with milk for breakfast, and usually the same as a bedtime snack. My breakfast is now high protein, two eggs, usually fried in healthy oil, 1/3 c raw organic pumpkin seeds and usually an orange or some other high Vitamin C fruit. And a cup of tea with milk, of course. Bedtime snack is now seeds instead of cereal, with milk. I do tend to "graze" throughout the day and I eat a lot of nuts and a snack food like chips made from beans, not bread. My lunch and supper are small. I've not gained weight and high blood sugar at start of pred is now normal. I think my fatigue or, face it, laziness sometimes, is due to pred knocking out my adrenal glands. I am sure they are working, but not up to speed.
We are poorly folk and need to treat ourselves kindly.
lodgerUK_NE ron25099
Posted
Your Rheumy is way off beam. Fatigue is common in all auto-immune illnesses. Not everybody suffers from it - but most of us encounter it during the journey.
Never ever try to work through it - give in - chuck yourself donw on the nearest sofa, bed anywhere, close your eyes and relax - you will be amazed how that helps. If you don't give in - it just gets worse you cannot win this battle.
Sheilamac_Fife lodgerUK_NE
Posted
Totally agree! Sometimes I only need 10-20 mins and the horrible heavy feeling has lifted! Other times it's 2-3 hours.... Whatever, it works so I must need it!
mark9992 ron25099
Posted
Okay, I was just responding on a similar thread, and you'll have to decide if this is at all helpful, but...
I got PMR, and was in quite some pain. Finally had it diagnosed and went on 20mg pred. Had the miracle feeling, but shortly after that I started to feel fatigued. Then the fatigue got worse, however in my case what I found out is that I had a raging case of medically induced diabetes that I wasn't aware of (and that the Rheumatologist hadn't bothered to monitor) and that I also had a raging flare up of Mono. All three of these things produce fatigue, so I had to get off of pred, control my blood sugar, and let my immune system recover so that the mono would go back into remission. I did it. 6 weeks or more of profound fatigue, and then as the pred slowly wore off, the fatigue started to disappear only to be replaced by FULL METAL JACKET PMR pain where I could barely stand or move. One additional month of that, and I went back on pred at 10mg (that was 11 days ago). Mono is in remission, and sugar is under control although I'm a carrier for mono it seems No pain to speak of either, although 10mg isn't quite enough to take away all the shoulder pain, ...no real complaint though. Bottom line, I had to take the time to exhaust all other avenues of fatigue to make sure what was causing it since I had other underlying issues that also brought on fatigue. Maybe you have an underlying issue too.
lodgerUK_NE mark9992
Posted
Book three one hour sessions one a week for three weeks.
If no improvment then the therapist will tell you it does not work for you. But Bowen in the search box top right hand corner and it will take you to previous discussions on Bowen.