PMR, PREDNISONE, FATIGUE

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....

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?

They seem to have failed miserably with this American lady. On the other hand why bite (or cure) the hand that feeds you. I must find out what is actually wrong with her, on second thoughts perhaps the witch doctors, nutritionists and consultants have cured her, but she did not realise it. I suppose she would have nothing to do, if she did not have whatever it is. 

It takes all people to make the world go round !!  Poor soul... 

I tend to be a very independent person or at least try to be very independent and not very trusting as well..... so I have enough problems trusting physicians....  never mind witch doctors !!! 

Stay well.if there is a well !

Judy, I was a dental hygienist, who didn't plan on retiring yet (age 58 when diagnosed with PMR last September), and my whole life revolved around active outdoor activities. I had a spinal fusion in Jan. 2014, which is what seems to have triggered my PMR to attack me 5 wks later. Didn't have a clue what was going on until 7 mos later, but I had to retire because first, I couldn't move due to pain, and second, because I had such crushing fatigue i could barely move from that either. Once I got on prednisone, my pain diminshed a lot, but I still had the severe fatigue for quite a while. It has improved, but I still have days that not only do I run out of "spoons" quickly (hopefully you've read the Spoon Theory), some days I don't have any to start with. It's been a big change in my life that I hate, and I don't get to do all my active sports for now, but I can at least go for a good walk with my dog and get a little of my outdoor fix. I miss my job, and the people I worked with, and all my hiking buddies. I just call them and make them go to lunch with me once in a while, or to a free concert in the park, or to a lecture on hiking. Maybe it's not my first choice of what to do, but it's better than sitting home feeling sorry for myself. I do have those days too, when I allow myself a day or two to cry and have my little pity-party, then I kick myself in the butt & try to get back out there. I just keep hoping that this will run its course in a couple of years, but I'm not very patient either!! Feel free to whine to us here, because we'll each take our turn to do it too!