Hello everyone, Have been feeling much better pain and weakness wise since increasing Pred. to 20 mg. Tiredness remains a problem. Went away last week to my sons. 1 hr flight and of course 1 hour 2 hrs before and after, getting through airport and driving to destination. Next day spent the day at my 9 year old granddaughter 2nd riding show ever. Some walking. 3rd day off with daughter-in law, 9 year old and 13 year old to Canadas wonderland amusment park. Used a walker there but gone from 10 to 4, then at 6 pm off to watch the 9 year olds riding lesson. Fun Fun Fun but I paid for it with 2 days of exhaustion and having to nap frequently on those days. Does this happen to others. I no you are supposed to pace yourself but sometimes it is hard. Do some of you push yourself more when feeling exhausted. Wondering if I should be doing that. Through the winter before diagnosis it was difficult sometimes even to find the energy to shower and wash my hair. At least I can do that now. Again just wondering if this is relatively normal with this condition.
It's normal, Carol Ann, to have spikes in energy level with PMR and Prednisone. Sometimes I feel a burst of energy and I could go on and on and if I don't force myself to rest, I pay for it the next few days with sore muscles and fatigue. It's got me into a lot of trouble, thinking I had some other condition or a flare, before I learned about pacing and not over doing. When something extraordinary comes up, though, like travelling or a family event, I was advised on here to take a little more pred to compensate for the extra stress and muscle exsertion. It works really well for me.
Your visit with your family sounds like fun!
This totally mirrors
This totally mirrors my own experience. I was with my grandson of two and using muscles differently, even went kayaking for a little while, came home to a duvet day. I was tapering to 18mgs but went back to 20 for a couple of days before starting again. It's hard to pace on a 'good' day but it definitely helps. Sometimes life takes over and is not perhaps a bad thing in terms of making you feel good - as long as you get a chance to restore!
After you take the extra pred, how long do you stay at the higher dose? Then how do you reduce again? Do you use the dsns method again, or just drop back all at once to where you were? I just went up to 6 mg; am staying on it for a month because I'm feeling a little better...so do I use the dsns method once the month is up to get down to 5 1/2, or would you just immediately start with 5 1/2 and see what happens! Thanks!
You can take the extra pred for five days and then drop straight back to your original dose but if you stay on the higher dose for longer you need to use the DSNS method to reduce.
Definitely does happen Carol! You most definitely pay after exerting yourself too much. The ideal is to pace yourself and not get into a situation where you exhaust yourself but life happens and sometimes situations arise where you just have to push yourself past your limits and then unfortunately you pay for it. You could increase your dose for a few days and see if it takes the worst of it away or rest, rest, rest and catch up on yourself! Sounds like you'd a fantastic time with your family and sometimes it's worth pushing yourself at times like that and great for them to see you so well!
Oh, thanks! I gotta remember this....
it took me longer than 5 days to recover from the setback, so looks like I'm doomed to returning to the dsns method when it comes to the next reduction. I know it's not a race but...it's hard (as you and everyone on here knows all too well).
All that will happen if you push yourself beyond your limits is you will end up good for nothing for days - and if you REALLY overdo it there are people who have taken weeks to recover AND have developed a flare that meant they had to go back to the beginning.
But the fatigue won't respond to extra pred nor will sore muscles of the sort you get after too much exercise. Pred helps the PMR, nothing else. The fatigue has to be managed by pacing.
Yes, I know it is hard, yes, I know we all want to be back to the normal we were pre-PMR. But that isn't going to happen - and in order to live best with PMR you have to know your limitations and stick to them. Long term it will improve if you work at it slowly - but you can't jump in and run a marathon when you have only been training by walking round the block.
What I find difficult to grasp is what my limits are... Sometimes I think I've overdone it but nothing happens, other times, after say, walking around the block or sitting in a cafe for a couple of hours , I feel exhausted and sore all over and need complete rest for a day or two. Is that "normal"?
We all over do it from time to time Carol Ann 35477. If you can plan an activity routine and try to increase a little at a time either in time or activity, you can build up more endurance. Then you might not over do it as easily. It is a pain, but just part of the journey. Good luck think positive and put a smile on your face. 🙂
Inasmuch as anything is normal in PMR - probably! Sitting can be very tiring - it is standing that absolutely finishes me off! Did a bit much of that at the meeting last week as the evening events were all buffets. The first evening didn't have much in the way of tables and everyone was greeting everyone having not seeing each other for a year. The rest had tables though - but even so, it was hard work!
I also am thinking that part of the problem after being inactive for so long is a lack of conditioning, muscle strength and endurance. Has anyone tried a personal trainer, although it is probably difficult to find one familiar with PMR. They are not inexpensive and I am just not sure that it would give me back my energy and tolerance any faster or better than just slowly trying to do more on my own.
Thank you all for getting back to me on this. I find this activity intolerance and fatique the most frustrating aspect of this condition for me. To a point you have to put your life on hold and I am still having a struggle accepting this. It does not help either that physically you do not particularly look ill so I have even had people ask me why I am using a handicapped parking sticker. I feel like telling them something rude, but that is not me, yet!! This condition may yet send me there. I think there is an AA pledge that says something about accepting that which you cannot change. Easy said than done I am finding. I am working on accepting it, as one thing I have learned is that being angry about something is very energy draining and does not change anything. Thanks again all. Enjoy the rest of your summer.
I'm having one of those days today. Can't do a thing! I am lying on the sofa, terribly thirsty but don't have the energy to get up to get a glass of water! At least now I know it isn't a flare .
Sitting without support for my head makes my shoulders and neck tired, but I agree, standing is the worst l
carol ann, here is the saying "Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."
Reinhold Niebuhr
American Theologian
Good luck on the rest of your journey, think positive and try to get a smile on your face, it does help. 🙂
A year ago when I was in agony (before diagnosed) I hired a personal yoga instructor who specialized in chronic pain and...she came to my house. Gave me 4 little moves that I can do laying on my bed. Helpful but many days I can't even do them. So I would say try to find someone who knows about pain, if you can. Hope this helps.
I'm in the same boat today. Had relatively good day yesterday for me, rotten day today. Go figure...
I know it seems to make no sense, and is so frustrating. Hope tomaorrow is better.
I think the best thing you could do is just regular gentle exercise at your own pace, and make sure for every period of activity you have an equal amount of rest time. Even pleasant stress can cause fatigue, often quite unexpectedly. Unless you were recently an athlete in your former life I doubt that having a personal trainer will do you any more good than taking up regular walking in the open air and some other appropriate exercise, like some types of yoga, pilates, tai chi, swimming and so forth.