May be a silly question, but can the fatigue of too much activity be cumulative? Fatigue has really been an issue for me since I got PMR about 16 months ago. I can be functioning okay on the prednisone but then suddenly I am "wiped out" for a couple of days.
Anyone else have this happen? Thank you.
I absolutely have that same issue. Best wishes to you! Linda
I cannot believe how fatigued I can get some times.
Read The Spoon Theory written by Christine Miserandino
Of course it can - and I'm here to back up lodger's suggestion.
I also suggest reading Despite Lupus, a blog by a young woman in the USA who has a business selling pill holders, married with two small daughters and a home to manage. Lupus is like PMR in its fatigue and her advice on managing it and what she finds happens when she misses her daily nap is invaluable. She knows missing her nap will work for one day. Maybe. Even shifting or shortening it is enough to accumulate enough deficit to cause a flare.
When you feel good on the pred you do more - and eventually it hits back. I used to be fine when I started a day, but suddenly I felt as if I had hit a brick wall and just wanted to curl up and sleep on the spot. That's why I keep saying PACE YOURSELF, know your limits and don't exceed them.
Kathy,
So true and so depressing. I was fine on Thursday and Friday for no outward reason I was so fatigued, weak, unable to move.... Usually if I do something "crazy" like alittle cleaning I know it can be problems but Thursday I really didn't do anything out of the ordinary. My life has been so "nothing" since PMR. I do a bit here and a bit there.
It's very difficult to be at the mercy of PMR. It controls your life. I do try very hard to pace myself but It's ...... On Thursday I thought Wow can this be so... I feel so good. I was going to write and ask if anyone gets over PMR in less than a year? But Friday it came back like a demon!!
As everyone says..... hang in there Kathy... Better days will come, I hope !! Take care of yourself.
judy
Hey Eileen,
I agree... some mornings I wake up fine and then later in the day or even in the morning I suddenly crash.... Hard to handle.
Hope you're doing well. judy
just another point..... I can not stand when someone says to me "oh you're TIRED today" It is far beyond TIRED....
Hi Kathy, yes I can identify with you. Having said that I have ME/CFS for 14 years and then diagnosed November past with PMR. I cannot get a handle on the fatigue, don't necessarily want to sleep but just so weak I cannot do much. When you can just rest, rest and more rest. I know it's a pain in the butt yet I have to accept it, it is what it is and I will get better, not cured. Hopefully as time goes on you will see an improvement. Good luck on your journey. Regards Pat
Quick answer - Yes!!
Judy
I kust had to reply when you said " My life has been so "nothing" since PMR."
I had GCA and started up our Charity.
"It's very difficult to be at the mercy of PMR. It controls your life". .
PMR does not kill you, it just sets you on a different path.
There are a host of PMR people doing things they never thought they would or could. Don't despair it only controls your life if you let it.
Some are running support groups.
Take our Charity , out of six of us, 4 have PMR, I had GCA (now in remission). Our Treasurer does not have either. But we are all FOGS and manage.
One PMR person, now makes handmade cards and sells them in aid of two charities.
One person, now paints and also sells the pictures.
So don't despair, and don't let it take charge.
Are you near a Support Group?
Lodger, compared to what I used to do my life has so drastically changed. I'm a physical therapist and I 'm not able to take any patients... PMR makes each day unpredictable . I've started to teach myself to chrochet and given away something's that are pretty good. I'm not the best. Plus it takes me forever to finish a project.
Friends ,as I've said before, don't really understand. Asking me if I'm tired drives me crazy... I push myself to move, to walk the dogs, to cook , to try and be positive...tired is certainly not what I feel!!
thanks for your thoughts.
I think a most of us have had a life changing experience with PMR, things really are very different when you have to start coping with it and are used to being active and care free before. I found it quite a shock as I had to give up so many things and when people saw me they said how I well I looked and you felt they did not know why I was saying there was anything wrong with me. On the other hand I could have much worse things. PMR has made me count my blessings, realise what good friends I have and to try out other, less exhausting, things. I do agree PMR is a bit of a bummer, on the other hand life is a lemon.
Ptolemy, I like lemonade !!! Yes, I agree there are worse things... I guess this can give me a chance to practice gratitude. I am fortunate but wish I was stronger !!
I am sure you are strong Judy. PMR definitely gives you an insight into one's personality. One big advantage I have found is that it is a great excuse if you don't want to do something, so I can get out of some tiresome gatherings without having to think up some excuse. I do swim which does get me out and about a bit and I can chat to people, usually at the end of the swimming pool. I met one strange American lady recently who suggested I should join
Dignitas, she was a member!!
Ptolemy, what is your role in Dignitas?
Hum - PMR may be a pain in the butt, it has caused me, like everyone else probably, to adjust my life a lot. We had bought an appartment at the foot of a ski slope to use in the winter and then retire to. I could work anywhere as long as I had internet access so it wasn't a problem in that sense. But, together with a couple of other, PMR-related, problems skiing is no more. My work has also gone up in smoke because of the "crisis" so I actually have far more time I could ski in! But it would be irresponsible in several ways. So I do voluntary work for the PMRGCAUK northeastern group - and have made wonderful friends as a result. Who understand when I say - tired...
But it hasn't driven me to feel a need for Dignitas yet!
It will improve a lot with time. If it doesn't then your doctor should be considering it may be something else and/or upping your pred dose.
I do know a couple of physiotherapists who have been able to continue working - albeit in the NHS where their employer accommodated changes to help in the early days by adjusting their workload to something less physical.
Believe me, we do get the concept of the "life-style changing" effect of PMR. Fighting it and being angry wastes energy you could employ more usefully elsewhere. Please don't feel I am preaching - but if you have to have a vasculitis then PMR is a pretty innocuous one to have. An hour or so spent on the HealthUnlocked Vasculitis forum is a very instructive pasttime for making me feel thankful. PMR may be lifestyle limiting, but it is not life-limiting.
I had no idea you could become a member of Dignitas until I met this lady. I thought you just took a one way ticket to Switzerland. I must admit I did think it was quite funny and so did all my friends. The lady is obviously very rich and seems to have an enormous amount of illnesses, I am not sure exactly what they are, but she sees a lot of private consultants, nutritionists, witch doctors etc..
Ooooohhhh - do you think a witch doctor would be able to deal with PMR?