Relatively speaking, my MS is mild and I am very grateful for that - but here is a mystery…
Since I recovered from my last relapse, a couple of times a week I run about 2.5 to 3 miles. I cycle too sometimes 20 or 30 miles - one recent ride was over 50 miles.
When I do these things I feel fine.
But most other times I can’t walk straight, my balance is poor and even climbing the stairs at home or work or getting in and out of the car is a struggle.
How can that be? Does anyone recognise this? Can exercise do any harm?
I don’t know if it can do any harm but enjoy it while you can. I have PPMS and can’t walk at all so am very envious but I would keep on doing it as long as I could.
Have fun Don
I am guessing here, but have you thought it might be you have some MS legions on your brain , in the balance control area.
I might by totally wrong here, but its is a thought. Physically, we are all jealous, I hope you carry on forever.
i am not jealous-simply because the only person it weakens/hurts/destroys is me! i am however genuinely delighted u can do these things. if i was u i wouldnt bother stressing myself out re the whys and hows cos sometimes thats enough to send us crazy (crazier?!) for the record i guess its something to do with fine and gross motor control…
Run, run, 3 yards would be amazing, lol. Actually it’s amazing just how complex the human body is, when you think how long ago we where first made!!! Im an auto electrician and the later cars from around 2004/5 have a body control unit and can bus signals, so if something stops working light bulb etc it knows because of the resistance and closes the line to same power till its fixed, digital signals sent to the components to make them work, just like the brain sending signals to our muscles, if the signal can’t get there the muscle won’t work, if I was a can I would try disconnect battery to re, boot. How do you disconnect a human? Problem is if the canbus system is totally faulty, you may as well scrap the car, sorry not got a happy ending. Have a good day.
Ment if I was a car, not can.
but if the shell/body is goosed but the engine is still working (even if not 100%) then surely u would try plan b?
Chocorange. No, not with the new cars your now driving a laptop on wheels, it’s electronics not electrics anymore, old ones yes rewire new ones with slightly less, technology than the average human, it would be financially unviable. But hey that’s a car, the law won’t let us scrap a human, this is getting weird now, think I should go drain my oil, bloody catheters. Lol
I’m newly diagnosed and like you have relatively minor symptoms. I’ve recently done the 10 in 10 in Cumbria and felt absolutely fine. Despite that, in the months running up to it I’d been out walking with the kids for a few miles on flat ground and felt knackered from the start to the end. So I relate to that state of affairs.
As I understand it you can’t do additional damage from exercise and the general rule is you try and stay as healthy as you can in the same way as you did prior to diagnosis. I think the trick is to listen to your body and if you start feeling anything that you know isn’t right you don’t force it.
I’m recently diagnosed and have relatively minor MS.
I’ve recently completed the 10 in 10 in Cumbria and had no problems. That said, only a few weeks before I’d go out to walk a few miles on a flat walk with the kids and felt like I was dragging my knuckles the whole day.
I think it varies on the day but, if you’ve got relatively minor damage and you prepare right the day before, I think you can do a lot and exercise in itself won’t do you harm.
I think the trick is not to force it if you do start feeling perculiar,
Not MS (awaiting diagnosis, not that I want to be diagnosed!) but I have hypermobile joints. Walking too much puts a lot of strain on my body and I can end up broken and in a lot of pain if I’m not careful (I do a lot of walking for work). After it got really bad 2 1/2 years ago I went to physio, did my exercises twice a day like I was supposed to, went to their weekly lower limb class, and then… my colleague was on at me to join the weekly running group at my work. I thought that was nuts, there was no way I could run. But the physio said “you can run if you want to” and I had to confront the second part of that phrase (“if you want to”). The gauntlet was down. He also said “you don’t need to train for a 5k”. But he doesn’t have a bloody chronic condition!
Two years later and not only did I do that 5k, I’ve done a 10k and now a half marathon. Not without injury on the way… I asked my new physio “how come I can run but I can’t walk?” He said it’s because my muscles fire more when I run and hold me in alignment better.
My job is now changing and I have a lot of walking coming up… probably more than my share as a colleague has just had a hip replacement so I’m picking up the slack. Actually looking forward to finding out if I can cope with it this time… but slightly trepidatious.
To answer your question, I would say do as much exercise as you can without inducing pain or injury (build up gradually - if you go for a long run/cycle don’t increase the distance by more than 10% from your last long session).
Maybe it is down to the speed. I think it is easier when moving faster to remain balanced, hence the added difficulty pedalling a cycle slowly. When running, you are only momentarily standing on one foot before lifting off and then tranfering to other foot. Also with a spinning top, it only becomes unstable when it slows right down. If you like, it takes time to lose your balance over one foot enough to begin falling, but by then you are landing on the other.
Many thanks for all your replies - I do of course realise how lucky I am - bet wishes to all.
Zetland, what is pm?
Foot drop was giving me problems but I kept on teaching fitness classes (polefit) for about 9 months before I literally had to give up (I wish I’d known about Uthoffs a bit sooner and I wouldn’t have had THAT hot bath!)
I could stiff dead-lift my bodyweight several months after diagnosis… but that changed over time Running might be OK as it’s a higher leg lift than walking.
I’m likely PPMS (so don’t be put off by me) and it still took me a year, no over a year, before I’d take down my pole at home!
I reckon the cycling would be a good one for me to try tho and it’s one I plan to try.
Did you know it takes 300 muscles to stand balance and walk, the brain sends signals through nerves to the muscles to make them do there job, so if the ms is stoping the signal getting to the muscle, what is the mystery why we are having problems?? And if we keep banging our heads against a wall, we will get headache. Night.
I can’t climb a set of stairs wthout feeling knackered but ran 5.5k up and down hill easily with my sister this morning!!! I don’t get it either! my balance is poor. I get dizzy easily but running I love…who knows??
My daughter gets married in less than 2weeks and we are working on how I’m going to walk her down the aisle, all this talk of running 2/5k mabe I should try jogging, wonder if she would mind, lol. Seriously people if you can go and run, good luck, keep doing it. Get a stair lift. Lol
I gave up physics when aged 12, and have long forgotton anything I ever knew about Newton’s Laws, but I guess that the task of holding yourself stable in space is easier when you have running speed up and momentum is keeping you heading in that direction by default. Ambling along leaves more work for your balance system to do in its never-ending and inherently unstable fight against gravity.
My running days are long gone, alas, and my walking isn’t great either, but cycling on a stationary bike is one of the things that makes me feel almost normal. Pushing down with my foot is something I can do reasonably well (it is the lifting up that I can’t manage) but I haven’t tried on a real bike for years for fear of falling off when I’ve come to a stop and need to ask things of the bad leg that it is no longer able to deliver on!
Strange, isn’t it, how we get to learn a bit more about how our bodies work by what happens when things go wrong? I think that is pretty much the story of neurology in a nut-shell!