Been on predisone 3 weeks. just can't shake how terrible I feel. Can anyone out there tell me if someday i will feel like myself again. I know I have asked many questions but I am so depressed. went swimming this morning, is that why I am exhausted..I did aerobic with a belt on. Nothing to crazy. thx
When you say you feel terrible has the awful PMR pain disappeared or reduced drastically once you started taking pred? If so what are your symptoms now?
So sorry you are feeling badly and I can tell you are miserable. I was too, it was scary and I cried a lot the first six months... Do you still hurt? If so it may be that you are on too low a dose. I hurt all the time but I choose to stay on a low dose. Give us all some more details and yes exhaustion is one of the worst side-effects because Pred messes with your adrenals.... Eileen and also ptolemy/karen81902 are very knowledgeable responders here so keep writing to us/them. Be brave,
I thinbk it's important to clear the inflammation out before embarking on a taper. There's not much point putting up with pain and the side effects of prednisone.
Are you possibly doing too much? One thing I didn't know and had to learn early on in my PMR journey was that my body required more rest than I expected. Relief of pain didn't mean that I could suddently do a lot of things, although until I learned better I did. My husband said I was like that (insert pink brand name) bunny when first on pred. There are so many things we can do to improve our health and wellbeing - improving diet, making sure exercise really is the right kind for our stree-intolerant muscles, reducing psychological and emotional stress, maybe trying an alternative treatment which others have found helpful. That kind of thing. We can be quite proactive in looking after ourselves, and that in itself can help us gradually lower our need for prednisone a bit more easily. But it will take time.
sorry about the typos. suddently= suddenly......stree=stress.....
3 weeks?! PMR is an illness that takes time. The average is 2-3 YEARS (or longer). You must be patient. We have ALL been where you are now. It does get better, but not in 3 weeks or 3 months.
Try not to get depressed, easy to say I know, but it will knock you back even further. Keep posting and keep resting.
I never did clear the inflammation out even after three years! So I self medicate 2 to 5 mgs and hold the line with Advil, Aleve and Excedrin. I am a regular little rattling bottle!
I put up with what I call "niggles" but they do not require any other meds to keep them tolerable. None of the PMR disabilities, like trouble rising from chairs, for example. None of your analgesics are a good idea to be taken on a regular basis with pred. Aleve is naproxen, Exedrin contains aspirin among other ingredients and Advil is ibuprofen. I do take aspirin for headaches, as I have no other medication that will touch them, but not frequently
and I'm really careful.
Karen - what is your current dosage? Generally one starts out at 15-20mg. If your dosage is lower it may be insufficient to bring relief. Most folks find the initial dosage to be somewhat of a magic pill. Sadly, it's only a mask. But a good one.
Thanks Daniel. You are right on the money. My mother had PMR 35 years ago and it was badly diagnosed and poorly treated and the drugs eventually killed her. Today, we are fortunate to have far more understanding and better drug therapy for PMR and most of us sort ourselves out in one way or another especially with this chat room.
Charko you really should be careful, you could be playing with fire taking NSAIDs with pred over such a long time. Do you get your other drugs over the counter or have they been recommended by your doctor?
I hear you. I am very circumspect. At the most I take 2 to 4 pills each 250mgs Advil or Aleve, that's 500 to 1000 mgs only per week. One week I might take nothing the next 2 Advil. The following week I will take 2 Aleve. I am having a flare up right now so think I will go back up to 5 mgs Pred which means I will not take ANY NSAIDS. My Rheum is comfortable with this cocktail.
When I say i feel terrible I do not mean the pain, the pain is gone started on 15mg 3 weeks ago. Yesterday i felt pretty good, this morning I felt pretty good. people atarted saying i sound so much better. Now this is where i may have messed up so please help me out on this. Went swimming this morning for 45 minutes. wore an arobic belt but today i took in hand weights and used them the whole time. Since in water they feel like feathers. Ran an errand after, came home and could not function Went to sleep for 2 hours. That is what I mean when I say I feel terrible. Not because of pain. I am starting a yoga class next week that deals with inflammtions, very slow. Do any of you do that. Have more questions but i will ask later so this does not get too long. Thanks again for all yuor help and support. I have learned so much for all of you.
Karen, time for a reality check. On this site and around the world, there are many committee athletes who have had to deal with the reality of PMR. And here's what experience tells us: exercise is good; acute exercise is bad.
i have been a competitive oarsman and hockey player for 50 years. Two years ago I rowed 47 races. Last year with the burden of PMR staring me in the face, I tried to power thru it. Big mistake, and I suffered for it. PMR is bigger than we are. So when I read your missives, I understand the psychology. You want to maintain. You want to do what you love. But you have to come to terms with the fact that you cannot. You have a to ratchet back. Yoga for inflammatory conditions sounds to me like whiskey for alcoholics. Sorry, but that's my read. Swimming with a belt on, or an intensive aerobics class? Flies in the face of what this disease is trying to tell you.
When I say i feel terrible I do not mean the pain, the pain is gone started on 15mg 3 weeks ago. Yesterday i felt pretty good, this morning I felt pretty good. people atarted saying i sound so much better. Now this is where i may have messed up so please help me out on this. Went swimming this morning for 45 minutes. wore an arobic belt but today i took in hand weights and used them the whole time. Since in water they feel like feathers. Ran an errand after, came home and could not function Went to sleep for 2 hours. That is what I mean when I say I feel terrible. Not because of pain. I am starting a yoga class next week that deals with inflammtions, very slow. Do any of you do that. Have more questions but i will ask later so this does not get too long. Thanks again for all yuor help and support. I have learned so much for all of you
I am swimming alone with a belt. Not a good idea? So you believe the yoga can be more harmful. This class is for peopel with inflammations. Now I am really confused. Any one else have an opinion on this before i start the class. So what is the best exercise. And is physical therapy ok?
Karen, we all feel cr@p at the start of this. I've been on Pred for 6 months now and can say that I feel normal for the first time for ages. I don't mean back to the normal that I used to be. I still can't run. Walking is ok but I find that while I'm on a taper I can easily overdo it. It's a real ballancing act. But what I mean is that I now understand my aches and pains and my fatigue and even my mood changes and accept them. This isn't gonna get better anytime soon so the best thing is to accept what you can't do as easily as before and enjoy what you can. It's an illness that can't be rushed so don't try to.
You will feel better soon.
all the best
Ron
I understand better now. You'll soon learn to pace yourself. You likely needed to have a break between water activity and errands. As it is, your body told you to take a break after you'd run the errands and wouldn't take no for an answer. You did the right thing to rest, even though it sounds like you were kind of beating yourself up over it. With PMR our bodies are intolerant of too much physical stress. Even what was easy before illness struck may not be possible right now. It seems counter intuitive, because you'd think, now the pain is gone, that everything would be back to normal. But it isn't. It's under control, but there's still an active disease process going on, and your body needs rest so that it can gradually heal. And I know how you feel. I don't think I believed a year ago I'd still be on prednisone today, and that I'd be living my life at a different, slower pace. But it does get better. You may find this hard to believe, but in some respects PMR has been a gift to me, a reason, as I guess I needed one, to take time for me at long last.
Try the yoga. I've done yoga for many years, not a lot but a few poses every day, and unlike physio which I'd had for my back for a long time, I was able to carry on with most of the yoga even through my many months undiagnosed. If you find the poses cause you pain, or if you feel worse the next day, then you'll know they aren't for you. But if, as you say, they are designed for people who have inflammation, they are probably going to be fine. There is a fine balancing act. First of all, you sound like you are pretty fit, generally, which means you can and should carry on with physical activity. But as others have said and I indicate in another reply, you almost certainly can't do what you did before you came down with PMR. Maybe it means something as simple as a little less time with the weights in the water, and a rest afterwards instead of rushing off to buy the groceries. If you start something new (like the yoga) take it slowly and judge how you feel. Build up slowly. I can't jog any more (hurts my osteoarthritic back) but I've taken up Nordic walking and that's helping to strengthen my back a different way - just giving that as an example of how activities can be adjusted.