I’m totally flabbergasted at the exercise regimes some people are talking about. These don’t relate at all to the experience of PMR that most of us have.
Do watch out for your connective tissues - tendons and ligaments. I used to do circuits, play squash, go for bike rides etc until PMR hit me at 67. After a while at 15mg pred I felt pretty normal and resumed. But over the 4 years of PMR flares I have gradually and depressingly seized up in spite of trying to keep fit. After about a year I fell and tore my shoulder tendons. Orthopaedic surgeon said I had acute damage on chronic, due to too hard exercise while on steriods, and because of that tendons are irreparable. There are reports of torn Achilles tendons etc. - look at known side effects of Pred - and you can’t tell until it’s too late - except that when you get to the stage where your skin tears with nothing in particular you can imagine what you are like inside. Can’t help thinking these exercise regimes are very risky and not giving due attention to the serious condition we have.
As I can’t even walk far at the moment due to a very swollen knee, I am finding the pool very good for overall exercise, though I can’t swim properly. Just bouncing around and waving bits about is good - Other Half (OH) recommends a “noodle” for added resistance! Goggles so you save your neck straining are good too.
I do find my muscle strength varies hugely, which shrieks Blood Flow variation - often better after exercise - in spite of my GP insisting PMR isn’t a vasculitis. Exercise these days is low impact cross trainer, static bike, rowing machine but very gentle. Going up to 10 mg for 4 days has settled the current awful flare, must try to get back to 8.
And - don't feel guilty all you normal fellow sufferers who can barely cope with normal life, daren’t book a holiday etc. We are the majority.
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Roltuba
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Oh totally with you. Can barely function most days. I have cringed on reading some of the exercises, and jealous i can't do it, or some of it! But i have often thought is it harmful. Thats rough on your tendon issues. Its hard for the people who feel able to do it to hold back, especially if they think it is good for them. I don't have that problem!! I held my new tiny grandaughter a few times over last few days and i can feel the ill effects! Thanks for the warning though. I hope you can get some relief from your tendon pain.
I am with you and I am 58. When I do a family weekend my walking can be doubled but boy do I know it. I usually have bed rest to be able to get sorted after 5 days or so. It's not like I sit on my backside all day either, (though morally nothing wrong with that -my favoured position is a good lay down), I have to take the dog out. I live in a 3 storey house I do a range of stretches for my sciatica. But if I overuse a set if muscles I suffer. I tried to use a strimmer about 10 days ago and managed 10 mins. My arms shook on and off, whenever I picked anything up or tried to hold it, until the middle of the 2nd day. At first I could barely hold a cup to my lips without spilling it. I have housemaids knee that flares if I overdo it. Golfers elbow from trying to throw a ball for the dog. Three years in I can vouch for the fact that tendons and ligaments are fragile.
By the way roltuba, does your Dr bleed people as well as not believe it's a Vasculitis ?? Maybe leeches too (although they are used again). Joins the numpty list. 😜
I’ve had sharp sciatica. The physiotherapist diagnosed coxidynia. I consulted the nhs website on this condition and found some helpful hints. One is to use a special cushion, I bought one from Argos and found a great improvement in the sciatica ( not in the PMR though),
Oh I wish I still had the exercises I got when I had the tibial plateau fracture, they are probably what you need to do, not walking, at this stage. What happened?
I had another transient global amnesia last week. I don't know if that was why but I fell and have massive bruises on both knees and the right one really hurts with typical pulled ligament pain. Anyway - I've now been bionic-ised and have a pacemaker - so EVERYTHING hurts!
OMG, you have been through the mill. Maybe your advice to Michdonn, the five minute walk, is in order here? But right now you probably just want to maintain some range of motion so you don't seize up completely. Gentle hug.
It was the underlying autoimmune part of PMR that they think caused the damage to the sinus node in the heart and caused atrial fibrillation originally. The pred is part of the management strategy at present.
Sounds miserable and painful - you have so been put through the wringer. Ironically your misfortune and determination to live your life have benefitted us all but I wish it wasn’t at your expense! You need a bit of cherishing..🤗
I read your post and am pleased your back and still here. Hope the pain starts to ease off soon. You are brave and strong with a positive outlook. Kudos to you.
it is really hard to see soft tissue injury on x-ray. I remember arguing with Dr when I refused x-ray and he stormed out of the office to ask why.. My answer was because I didn't brake bone and you can't see if my ligament is inflamed on xray... that is why. His answer was interesting.. I just wanted to see who refused and why... but he did not insist on X-ray further. After working 20 years or so in that field as an engineer, I am very careful not to expose myself to unnecessary radiation.
Thank you for this Roltuba. I've ended up feeling very downhearted and rather inferior after reading about some forum members' exercise regimes.
I can't pretend I was ever sporty or much given to exercise, although I was a good walker, and even your more gentle regime would be beyond me, as I never got acquainted with exercise equipment in the past. I did try a couple of gentle exercise classes earlier this year but they left me exhausted and I had to take the following day to recuperate. This morning I went to the hospital for my regular monthly blood test and then to the pharmacist for my pred and methotrexate (my GP hadn't sent the prescription to them, but that's another story!) Anyway all that 'exercise' has finished me for today and it's the sofa and Talking Pictures TV for me this afternoon, plus my knitting so I'm not entirely lazy.
It's the recuperation that is the key. And yes it's hard to hold in the feelings of inferiority but at the end of the day we can all do what we can do. A very sporty persons experience is a a comparison to their usual regime. For me, my previous regime was active but It's hard for me to know which of the health issues I have impact more.
I was very sporty pre fibromylgia. Cycling (holidays with 70plus miles a day in pyrennes with tent etc on bike) gym, squash, swimming, hiking (10 to 15 miles every Sunday) etc. In between flares of fibro I could do swimming and a bit of walking. But PMR has seen off the rest of that. I wonder if fatigue with pmr/GCA rather than pain/stiffness alone makes a difference. It is a funny condition and people just have different systems. Me. I walk slowly and stop a lot. I can just about get things off the top self if I use just 1 arm. I don't think there's been great or significant improvement as I can't seem to get my muscles stronger. Stamina is zero. Sorry. Wittering on!
Witter away, it's all words of wisdom, especially 'I walk slowly and stop a lot' - that's me to a t! You're pre-PMR regime most certainly isn't me at all... I've always been hopeless when it comes to exercise, and the sense of inferiority goes right back to schooldays and always being the last to be chosen for netball or hockey.
Some of us don't do exercise or aren't sporty. My mum never did gym etc but she worked and looked after us all. My older sister has never been sporty but gardens. My younger sister only took up jogging at 45ish. People just have different needs. It doesn't matter how much there is talk about exercise making you feel better it's no good if it makes you miserable doing it.
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P.s haven't done much at all since 2002. Lost my balance so no cycling.
If you feel miserable it's because you haven't found the right exercise. You only need to look at the human body to understand it is intended to move, and to move quite constantly: a gracile form with long limbs intended for climbing trees and loping through savannah.
The only structured exercise I have really enjoyed, that is in a group, was the tai chi classes I took a couple of years ago because I needed the instruction and I was learning. Mostly I walk by myself, and I do a little yoga (can't manage much these days) and a slate of very boring physio exercises, with radio or tv for company to make it bearable. I hated phys ed and games in school. The only activity I ever remember enjoying was sometimes when we were still quite young we were allowed to play "pirates" which involved getting around the gym without touching the floor. Maybe that was my primate instinct coming out?
😂😂😂 yes we played a similar game but I can't remember its name. The physio exercises I do are boring but I have done them for 20years so just part of pre breakfast routine. I love taking the dog out and being away from the city. Fortunately only a 10min drive.it is hard finding new flattish walks. I can't go up or down very well these days but love the fresh air. The only thing I hated at school was the cross country. I am all fast twitch muscle so only liked 100 to 400m at most. I would love to go swimming but my current germophobia gets the better of me!
I think I would have enjoyed physical exercise better in another environment. When my kids were in school I went to a Home & School meeting where they were talking about the "new" way of teaching Phys Ed, and we were invited to participate in the format so we'd really understand. So with high hopes I started doing the activities. And in next to no time I had a wave of the most uncomfortable feeling. You had to a perform a certain task and if you "failed" you then had to do ten jumping jacks. I don't think we were ever subjected to that kind of consequence when I was in school, thank God. But it awoke in me a memory of my feelings of inadequacy. Then I realized, I'm an adult, I don't have to do any of this, and the relief was palpable as I just stopped. Other people seemed to be having a great time, and my children have all grown up athletic to one degree or another (marathon running, soccer, floor hockey, ultimate frisbee).
Walking is my regular exercise these days. I do Pilates but my ‘hip and rib’ connection is apparently lacking. I felt inadequate for a while and then decided at least I’m trying. I never do anything that hurts! If I do, muscles ‘snap’. Instead I pace myself and dream of one day being able to rejoin the local gym and do Zumba and yoga and swimming....etc. I know my limitations! I’m currently in the Loire valley, walking lots (11.000 steps is lots for me) and eating well (a few naughty treats too). Surprisingly I’ve slept better here than at home!
I can put up with the gym if I have my own music to listen to, pool is very boring. OH does 2 classes and hates it all, but we keep up the formal exercises in the hopes that it will enable us to do things we want to do outdoors for longer, defying osteoarthritis etc.
Yes, I firmly believe the stroll (stroll being the operative word) round the village with my dogs has been very beneficial. Too used to jumping in the car! Occasionally we venture to the nearby park where they can run for England - I'm very good at watching.
It's the oxytocin surge that makes you feel good when playing with, or cuddling you dog. 🐩🐩🐩
In my mind, the best way to get over this mess is to move your body as much as you can without over doing it. Overdoing it, it seems to set you back a few days. However, it seems to recover to the same place it was prior to Overdoing it.
To me, the fastest way out of this mess is to keep moving and get the poison out..
I hope it works for you. But you can’t outrun this illness or metabolise it away. Feel The Burn and Work Through The Pain Barrier are not valid ideas if you have something wrong with you. Hopefully you will have a lot more years ahead than a lot of us after it has faded away, so don’t wreck your body permanently before it does. See my original post.
The more you move, it seeems, the more you can move next time. Seems like you have to force yourself to take baby steps forward each day without overdoing it. It's like a moving target and very difficult to manage. To me, it seems, moving is the key.
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People's ability to move is very different within the group of pmr sufferers. For some walking to the door might be all they can do on a particular day. For others it's walking 8miles and yet others long cycle rides. I will never be able to ride a bicycle again but I can walk a few feet with the support of a crutch. If I could afford a tricycle it might be able to exercise. Each time I try and add distance to a walk, but at the moment there seems to be a wall. If I try and go past that wall I will not get home or back to the car. I have literally crawled back home on occasion. When you wake up and know that it's going to take all your energy to get showered (baths impossible) and dressed and then will have to rest for an hour it's hard. If I change bedding I lay down for an hour. You get the picture, people do try and move more but for many this just covers looking after meals and enjoying small victories.
As one who was probably part of the catalyst for your comment you have made me reflect (something I do too infrequently).
Firstly, my recent post was to let others know that, for some of us, a fairly high level of exercise remains possible, and certainly wasn't suggesting other than that PMR is a serious illness, nor ignoring the potential consequences.
Secondly, around 2000 I was grossly overweight (it was a toss up whether I'd use Foodie or Squashie as my nom de plume) very inactive, and heading towards failure of my only kidney. Over the time since, I've managed, primarily with exercise and some diet adjustment, to shed 30 kilos and get to annual kidney checks rather than monthly and with a now positive prognosis. A consequence has been that my addictive personality has latched on to exercise. That said, some mornings I trudge the kilometer to the gym, but always walk with a spring on the way back - never underestimate the power of endorphins. Now I need to sort out whether my current spate of soft tissue injuries from squash is pred related or simply an aging body doing too much. I'll let you know how it goes.
And thanks once again for stimulating the reflection.
We all vary in our abilities/disabilities throughout our journeys with these conditions. I try not to compare because truly....none of you are me. Whether it be current pred dose, or exercise regimes, comparing myself to others often leaves me feeling “less than”. So I plug away, trying to enjoy my deep water exercises a couple of times per week, making adaptations if need be. Can’t walk far while I wait to get knee replaced, but that is temporary and I’m up for the rehab challenge. I recently flared and am back at 9mg for awhile. We are who we are, we are at where we are at, usually having made some adjustments.
While I recognize our experiences are different, it is our common ground that is so comforting and normalizing, so for these things we have in common I am grateful to not be going it alone.
Thanks for your relevant post about experiences with exercise. Hope the pool continues to be a source of enjoyable activity, along with your other exercises.
I can only talk about myself and how exercise impacts me. We are all different. Our PMR and reaction to it is different. We have different bodies, different ills, different "baggage" .
I confess I am addicted to exercise. It gives me relief from stress, and it feels good afterwards. About 30-45 min into endurance exercise body releases powerful chemical - Endorphins and it makes you feel relaxed and makes you feel good. It gives you natural high. Most of my life I have been working pretty stressful jobs and my way to achieve balance in life was to exercise. So it was very important to me even before PMR.
After being diagnosed with PMR I asked myself if I can improve recovery with exercise. I wrote a log that tracked my progress and challenges for first 2-2.5 years of my PMR journey with title "PMR and Exercise - Experiment in progress" in which I share my observations. It can be done, if you don't have any other illnesses and you were in good shape to begin with - at least that is my experience.
My intention is and always was to give a hope to newcomers that there is a way to recover. One has to be extremely careful and know their own limitations, or they can get hurt in a process. In spite all the negatives, it can be done.
The experts????? say 10,000 steps a day. That is, of course, if you are healthy to start off with. So, as I am not, I halved it. Then I thought "that's more than an 80 year old with PMR, Polyarthritis, Gout (among other things), can do". So I halved that - 2,500 steps a day.😏
That should do it as I used fit-bit and found I do about 1,400 steps per day generally (with mini household jobs, shopping, etc). That leaves 900 steps. Well, when I can walk at all, I thought, 450 steps there and 450 back isn't toooo strenuous! Achieved!!! 😂😂😂😂😂
Its good to do that and set your Fitbit target at that.
I just put mine on at first and its set at 10000. It was soul destroying as I was nowhere near that. I reduced to 5000. No. 3000 some days depending on if I can get out and about. I set my target to 3000 so on the days I hit it I get all the fireworks "rewarding" me. Once I hit it more than miss it I will raise to 3500 or 4000 and so on.
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