After my 20 length walk in the pool yesterday.,Woke up this morning in real bad way. Fingers rigid , hands & wrists very painful. My legs aren’t so bad considering they did most of the work ( lol), but I feel lousy , depressed , fed up.
I assume the exertion of walking sends this “ disease” around the body? Am I having to settle for a life of inactivity now.?
Sorry if i’m A pain , but never ever expected this.
Hi,
No you don’t have to settle for inactivity- but what you need is sensible, gentle activity. I would say 20 lengths of pool is not sensible at this time.
Your muscles aren’t as resilient as pre PMR, pre Pred - so be gentle with them! As you improve, you can up the ante accordingly.
The way i’m Feeling at the moment, can’t even envisage doing anything. Taken my prediction an hour ago. Seems to take all day for me , before they kick in . Is this normal?
Just feel rotten physically & mentaly
Everything hurting now.
Sorry to hear that - but probably your body letting you you did much too much yesterday. Don’t worry we’ve all been there!
As for Pred taking all day to kick in maybe you should consider taking a part dose at nighttime- that may may help in morning-then rest at breakfast. Usual split 1/3 night 2/3 morning .
As for exercise try Pilates or Yoga- I find Pilates good - not too much standing.
Thank you: From what I gather you are the Guru on this site. Can I just get a handle on this disease!
Why : how : have I / we ended up with it? Is it really stress related?
As far as split dosages this is all new to me. I’m back at the Soecialist Saturday , with my list of questions.!!!!
Couldn’t even butter a slice of toast just now.
As for Yoga I used to go 3 times a week Hot Yoga. At present I can’t even put my own socks on !
Hi,
I may be one of the gurus - my speciality being GCA, but as the name implies PMRpro is numero uno all things PMR wise, and most other things as well!
Have a look at attached it may help you understand your illness and all it entails a little better, but just keep asking questions, we all learn something new everyday.
healthunlocked.com/pmrgcauk...
I had slightly high blood pressure managed successfully for 20 years so not that, but then hubby was chronically ill with coronary problems from 1996 to my start of GCA in 2010, so definitely my pre cursor was stress. For some it’s another illness(es) or maybe an accident or operation.
Ahhh good old stress.
I am / was a stress bunny .
Maybe.....?
That would be my bet!
It’s so unfair! Movement is usually good. Perhaps 20 lengths was too ambitious. Did you use your hands to propel you along. Strange reaction. It is usually muscle weakness that we become aware of. I am feeling all the walking I’ve been doing, up the back of my legs and lower back pain.
Not really , more for balance. My shoulders are screaming in pain as well.
Oh dear.
Yes, I get lots of problems when I exercise. I got down to about 3 mins walking in the pool and it still kept me up at night in pain! Mind you, I'm never sure how much is the PMR and how much the OA. I have recently started Tai Chi and Qi Gong. I am in the dunce class with most of the group being at least 20 years older than me! It does mean that I don't feel like a failure when I have to do lots of the exercises on a chair. I am really enjoying it and have at last found something that doesn't give me lots of pain afterwards.
Thanks
UM - which bit of "start SLOWLY" poses the problem?????? And what temperature was the pool? Warm? Cool? I found anything under about 27C meant I just seized up - had to be warm.
Anything you do in water takes 7 times as much effort as on land. So it is all too easy to overdo things. Start with a couple of lengths walk and see how you feel next day. Then add another length - and see how you feel next day. Rinse and repeat! It sounds slow but it isn't when you steadily increase without feeling as you do now and you won't be doing anything until this DOMS (delayed onset muscle soreness) resolves. That will be much longer than you are used to I'm afraid. But you don't have to be inactive - just go about things a bit differently from what you are used to in "training". Your muscles are intolerant of acute exercise - but you can train them to deal with what they have been trained for.
As for the pred kicking in - when do you take them? The new lot of inflammatory substances is shed in the body at about 4.30am, the sooner after that you take your pred, the less it has to do as the cytokines haven't had time to do much damage. The ideal time to take the pred to avoid morning stiffness has been found to be 2am - the pred is at its peak at about 4am. An alternative is to take it as early as you can and settle down for another couple of hours until it should be working. If the effect of the pred doesn't last a full 24 hours you may need to split the dose so the effect carries over. Then the time of the morning dose becomes less significant.
What leads to us developing PMR? No-one knows. It is an autoimmune disorder that makes your immune system unable to recognise your body as self so it attacks certain tissues, leading to damage and inflammation. What it is that sends the immune system into a tailspin isn't known.
The water was warm . I take the Pred 30 minutes after I wake, after taking the other tablet for stomach issues.( the name escapes me) ? With food.
I always wake with muscle aches in arms and shoulders . My legs seem better.
( groin & knee ) ... although this morning that wasn’t the case.The most painful however were my fingers and wrists.
Maybe I could cycle to my local shops each day. I have an Electric bike which is effortless . It’s less than half mile away.
There is nothing wrong with your water walking - I did aquafit and it was fantastic, kept me mobile if not pain-free without pred. But you MUST start anything at silly low level - and build up at silly slowly. You feel a prat - until you realise it works. Every winter I got from 3 very short ski runs on alternate days the first week to a full morning skiing most days by doing it that way.
Oh well guess i’ll Have to go with the flow. Very low in spirits at present . Pain I can handle. Hearing it could be 2years or more so upsetting.
Ho hum . They say youth is wasted on the young.
Feel I’ve caused this myself.
This is not to discourage you: I have had PMR for 14 years. But I am very unusual, one of maybe 5% of people who possibly have PMR for life. The first 5 were without pred (not my choice I hasten to add). PMR does not stop me doing anything I want to - I just do a lot of it a bit differently. I no longer ski - but there were other reasons for giving that up. There is no need to be low - it is a learning process and you had a very hard lesson yesterday. We do our best to prepare people but they often just don't hear us or think it won't apply to me, I'm different.
Use pred and exercise properly and you will neither have significant pain or struggle half as much as you think today. And no, you haven't caused this yourself - I wasn't a stress bunny but I still got PMR (or something). There is no one thing that did it, there will have been many factors, including your ancestry, and eventually one was too many for your immune system. Believe me, there are many worse things to have to learn to live with than PMR. It doesn't kill, it doesn't even maim, as so many autoimmune disorders do. If you feel badly done by then go and hang around a lupus forum or a vasculitis forum - where you will see young people, in their teens and twenties often, who are faced with a potentially terminal illness. We have had a good life - now it may be time to sit back and smell the roses for a while.
Have a read while recovering
healthunlocked.com/pmrgcauk......
Thankyou
I did aquarobics and it did me in, she used different tapes each week and the fast tape was the culprit, did you go to one that was lead by a health professional? - I won't do it again in a 'normal' classe - started Tai Chi instead and it's suiting me fine, get a food workout - equivalent to Zumba apparently - I like it because, unlike yoga, you don't have to get on the floor, and can sit it need be.
No - but a class that was mostly retirees so she aimed at them not the bairns! We discussed it before I went in so she knew why I was doing it my way at first. Every time she changed the programme I started at a low level again. The Pilates and yoga teachers were both superb with medical limitations too.
As has already been said, no but you must pace yourself, you're learning the hard way. Still do the things you enjoy but at a much slower pace and not as much - it takes ages to get through overdoing it and is simply not worth it - as you're now finding out - we've all done it so don't beat yourself up. Just take it steady now and cut the number of lengths you do and gradually build up but it has to be slowly slowly I'm afraid. ATB.
Thanks: That’s a really positive reply& piece of advise.
Why do I seem to improve in the evenings?
Is that normal?
We're all different but it's not uncommon. I feel better in the evenings most of the time. Take the positives out of it - if your crap during the day then accept that too, it's swings and roundabouts, what you shouldn't do is try to override the bad times - and don't do too much when you feel okay, it'll bite you back as you already know. You'll get there in the end with patience. Lots of advice on here from differing experiences which show you're not suffering alone and that has to be a comfort if nothing else.
Wish I wasn't as lively in the evening just been internet shopping! - well it is Black Friday and some great bargains - it's Christmas after all.......
Quite a few people do - I did even without being on pred. Once I could get moving I steadily got less stiff through the day. I think it may simply be that once you are moving/warmed up the muscles are getting a better blood supply because the blood vessels are more dilated and that helps. The earlier you take the pred the more useful day you are likely to have - I use Lodotra, the form of prednisone you take at night and it works from 4am, before the new lot of inflammation and stiffness gets hold. I have no stiffness in the morning at all - it makes a big difference.
thats interesting.When i see my consultant tomorrow, i will ask about same. I wake up with very stiff wrists .Yesterday, i was far worse than today.never the less, can well do without this.
my story
Loosing my balance when walking
Update on my PMR journey. 
MY DAUGHTER SAW THE LIGHT
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