Having been a fan of keeping active and having been diagnosed with PMR . I was wondering how long it took most of to get back into a normal active routine. Just a question is there a normal?
Excercising: Having been a fan of keeping active... - PMRGCAuk
Excercising
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susieq051
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It varies from person to person susieq051. It can be years I am afraid. It can go into remission after an average of just under 6 years. Some lucky bods get away with 2 yrs - some have to wait it out a lot longer.
Does this question mean that you are on a dose of Pred that is controlling your symptoms? I hope so!
The kind of exercise that suits us is gentle Pilates, or aqua aerobics, or bespoke exercise from a physio, walking - little further each day. These must be done in a paced way with a lot of rest. GCA is a serious systemic disease, you need to look after yourself. If you can manage it, try to cut the carbs right down. Just concentrate on reaching a plateau of wellness with Pred’s help for now. Keep us posted!
Thank you no I have first visit with the rheumatologist Monday October 21 I even had to struggle to get that because of stupid doctors office. I take care of my 90 year young mother who has myasthenia gravis and Thank the LORD she is able to get around to do the stuff she needs to I am impressed, with her. She states age is all in the mind. I am struggle with still learning how to cope.
Susie you are lucky your Mum at her young age is a little independent..
It’s not easy taking care of either the sick or elderly, even when we are young and healthy...
I know today, had my late husband rip..taken ill when I was diagnosed with pmr , then I could never have cared for him in the high standard which I did. If at all. ( five years of serious cancer issues)
You must get help to help with your Dear Mum, you may feel you can manage but it’s not very easy looking after ourselves with this pmr/GCA disease..
Take care of yourself first. Remember on airplanes, the flight attendant always says,
“Put your own oxygen mask on first and then help others if needed”
Good luck with the rheumatologist on Monday.
YuliK. 76 🌹
It seems with PMR that we each have to find our own way. I'm a 79 yo male diagnosed Sept 2018 and currently at 4.5mg of pred. I have been quite lucky - my response to pred was relief of symptoms later in the day I had my first dose, and so far no flares as I've been tapering.
Nearly a year ago I posted
"Pre PMR I exercised daily, and played squash 4 to 5 times a week. I'm still following the same pattern and haven't experienced any of the often remarked on fatigue or DOMS."
The same remains true for me today. I have had a few soft tissue injuries which may have been contributed to by pred, but that's because I still refuse to accept that I'm an old man and behave accordingly!
I suspect the only way to answer your question is to steadily go back to your old routine, all the while listening to your body, and backing off when you know you're pushing too hard.
Yes after looking through all the posts Bout exercise I guess I am going to have to take this all one day at a time.
Yes, one day at a time is best. Remember that PMR + Pred predisposes us to muscle pulls and tendon issues. Slowly, slowly and carefully.
Thank you I do have to remember that.
I have had PMR for coming up to 5 years. Initially on 15mg pred. a day and from day 2 onwards I have been lucky enough to go back to a pretty normal life with minimal side effects from the pred. and thankfully no fatigue. I walk a couple of miles a day and do weekly pilates and yoga Must admit to being a bit creaky in the pilates and yoga but I've only managed to reduce to 10mg a day now and reluctant to go any higher although I think it would help.
Thank you, the fatigue because I am taking 40 mg of prednisone a day while I was prepared for a lot of things. I was not prepared for the fatique .
Hi there
I was diagnosed May 2018 and before I started steroids I felt very weak,could hardly walk.Was warned to take it easy or do half my normal once I started steroids and gradually increased this till am back to normal now-everyone is different I find walking and cycling helps me to be less stiff and achey.Gad to give up my exercise classes (barre aerobic) as repetitions on deep muscle groups made me worse
Thank you I have an exercise bike here at home at least I can keep that up. Thank you for the information. I can go slowly, slow is better then nothing.
Be careful with something like cycling - or any other repeated action using the same muscles. I'm not saying don't but I am saying careful in building up the amount.
Thank you for the heads up would it more advisable to seek help from physical therapist
Only if they know something about PMR! I never did. Just bear it in mind, exercise one day at a fairly low level, rest the next and assess. If you are OK add a tiny bit in terms of time until you DO feel it on the rest day and go back to the previous level for some weeks before adding a bit more again. It does work.
Nick below does know his stuff when it comes to exercise with PMR!
It varies a lot. If you were really active before PMR, you may try to do the same activity at lower level of intensity. It is possible to regain all fitness, but it takes concerted effort and patients. Before PMR I was in active training for triathlon (age 66). Immediately after getting PMR I could not get out of bed on my own, that is how bad it was just before being diagnosed and given prednisone. As soon as pain was gone, I started with short walks, which I extended gradually. Within second month I added biking and then swimming to regiment. Very gradually I increased length and intensity for each and after about a year I was back at the same level of fitness that I had prior to PMR.
Now, almost 4 years after, I still maintain high level of exercise and occasionally challenge my kids, who are in mid 30's to keep up with me :).
Thank you! Gives me some hope that while I am not a true athlete I can still keep going even if to wear down calories. Thank you I am very new to all of this.
It will get better- am planning to do a bike ride across Costa Rica in 2 weeks time 220 miles!!I signed up for it before being struck with PMR- have gradually built up length of my cycle rides with no ill effects at all-
PMRproAmbassador
I had been exercising for the entire 5 years of PMR without pred, I'd had to change gym to find one with a range of offers I could do - floor movement classes just didn't work but aquafit was perfect. I started with a very low level and not always the full hour and built up very slowly until I was doing the same or higher level than almost everyone. After that class I was mobile enough to manage an adapted Pilates or Iyengha yoga class - couldn't move enough without the aqua first.
Everyone is different. Often you can continue with what you have been doing - but at a lower intensity at first. Others, like me, have to change the choice.
Hi, I’m probably not typical, as I was and still am fairly fit for my age (59), but I was able to resume my usual running regime 2 weeks after going on 15mg Pred 4 months ago and have never stopped since. Just my experience, and you may be different, but it is possible. I’ve since completed a half marathon, and 2 hilly cross country races with as good times as I was getting pre PMR, I’m currently on 4mg and still feeling OK with no flares. Before Pred I was too stiff to run or even walk which caused me mental health issues.
Go for the burn as I never looked back and dont listen to what the old fat women on this site say advocate.
This person is insulting! Shame on you!
That's precisely why I ignored him, people like have to face a problem someday it is just a matter of time
in reply to Constance13
Morning Constance,
I have restricted this person at 2.30am this morning, l decided to leave this comment standing (for now) for Members to see what we Moderators deal with in the early hours of the morning!
It’s in hand, MrsN 🌷
Constance13 in reply to
Don't you ever sleep?
I dont!!
I manage10 hours per night!😂
My god i would love that much sleep a week!! The pred is completely messing any sleep.pattern i hadx
It makes me sleep! That's the ONLY thing I've not minded having PMR!
Thank you for your feedback all of you, gives me some hope that I can return with some degree of normalcy.
I returned to normal (strenuous) exercise as soon as my PMR symptoms disappeared: when I switched to an appropriate split dose. Since Christmas I have taken a tablet a day and, after 2 years, I'm on just 4.5 mg.
I hope I can get to that point.
in reply to susieq051
You will if you just monitor how your body feels after each bout of activity. If you ensure you are taking enough pred to control symptoms.... Whether that's at 1mg or 20mg, and you blend rest and activity successfully your quality of life can be excellent to good because quality of life is probably 90% in the head, so patience is vital.
I save my energy and movement for enjoyable things.... Things that make me smile and feel some level of satisfaction. For everyone the blend of rest/activity is different and you should never measure yourself against anyone else. 🌻
I will have to try to see how well how can do. But Thanks for the feedback
in reply to susieq051
Start slowly and build up slowly. Some have to just get up and walk round the house or to the gate/back garden every hour or two. I just walk a bit, sit down a bit. And I mean a bit.... I have other mobility issues so am used to pacing myself. Perhaps have a look at the idea of spoon theory as a way forwards.
No you are very correct, This not race mind goal just to keep the weight down so while I slowed down it doesn't stop me completely.
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