Normally I go for a gentle walk every day (less than 3mph) and that’s been fine. This weekend (Saturday) hubby and I went shopping for various bits and pieces. I’m sure the total distance was no more than my usual walk, and the walking speed was certainly no faster. On Sunday I felt so weak and shaky that I wasn’t even able to take a shower (we don’t have a shower stool - must get one!). On Monday I felt a bit better, but still too weak for my usual walk. Yesterday I felt well enough to do my walk, but it left me feeling weak and shaky again. I’m not sure I’ll be able to do my walk today. The weak, shaky feeling affects my arms as well as my legs, and I feel like my heart is pounding even when it isn’t.
Has anybody else experienced this? Is there any treatment? I feel that I need to do some strengthening exercises, as my upper body strength is very poor. Will these help or make things worse?
This whole exercise/exertion is a big issue at the moment. We’re going on a cruise in October, and there are places of interest to visit almost every day. Right now I’m thinking of not doing much exercise until we depart, in the hope I will be able to do more while we’re away.
Is it possible you’re having a relapse? I always feel a bit like this - i.e. never as if I didn’t have anything wrong with me - but it’s most noticeable when I’m having, or have recently had, a relapse.
So as your “gentle walk” doesn’t normally make you feel this way, I wonder if that is perhaps the case with you?
I don’t think there’s any treatment. Only what you’ve already identified, which is to try to persevere with exercise, to whatever extent is still feasible.
I do think it’s a bit of a vicious circle, in as much as if you start avoiding things that make you “tired”, your capabilities become even more limited. So, to an extent, it’s about finding where to draw the line with “livable” tiredness. Obviously, you don’t want to get so exhausted you collapse, but also don’t want to give up things just because they cause mild or temporary discomfort. I find I can live with being a little weak or shaky afterwards, and accept it as “normal” these days. Obviously, I don’t like it, but if the alternative is quitting everything that might cause it, I don’t like that either! I think everyone has to work out their own happy medium.
I’ve mentioned this weak, shaky feeling to my neuro. He says it’s unlikely to be a relapse - if I had a relapse every time I exerted myself, I’d be in a wheelchair by now (his words).
When I go for a walk, I try to gauge how far is ‘half-way to kn@ckered’, and turn back before I get there. Sometimes I get it wrong and I end up virtually dragging myself home. Even then, I’m not weak and shaky the following day. Maybe the heat on Saturday was the difference - it was quite warm (around 25C) in the Midlands, where I live. With any luck, it won’t be that hot on the cruise. We’re doing Adriatic, Aegean and Black Sea. Top temperatures shouldn’t be much above 18C, from what I’ve read.
I agree about not giving things up. As I’ve said to my MS Nurse, I have a choice between ‘living’ and ‘existing’. If the price of ‘living’ is feeling weak and shaky for a few days, I guess I’ll have to live with it.
The only reason I questioned whether it might be a relapse is you report this as not being typical for you - i.e. you have walked distances that are normally fine, but suddenly they’re not. So I wondered if the sudden change could be explained by a relapse.
Alternatively, could it be a so-called “pseudo relapse” (something that looks like a relapse, but isn’t a proper one)? Sometimes these are triggered by something as minor as having a bit of a cold. Occasionally, I notice I’m a bit more feeble than usual, even before I get the first signs of sore throat, or runny nose. Then I think: “Aha, that must have been the reason; I’m going down with a cold!”
I’ve had MS for more than 20 years (10 years benign, the rest RR) and nobody’s mentioned pseudo-relapses, not even my MS Nurse (usually brilliant). I did a quick search, and it turns out that increased body temperature, such as a hot day or over-exertion, can trigger a pseudo-relapse, as can infection. I don’t think I’m coming down with anything, but it was hot on Saturday. The cruise should be fine, but I’ll have to remember to avoid hot countries on holiday. Low 20s Celsius is my comfort zone for outdoor temperatures.
Thanks for the info. It’s set my mind at rest. I think I’ll treat myself to a set of dumbbells and start work on my upper-body strength.
LoL - I do the dumbbells as well - but they are very small, ladylike dumbbells - they’re even pink!
A word of caution, though: it probably won’t affect you, if you’re only planning to work upper body, but I had an excercise where I had to lie on my back, and lift the dumbbell with my feet. OK, except you can’t grip properly with your feet - or I couldn’t, anyway - and one day I dropped it on my face - Ouch!
Fortunately no permanent damage done, and I couldn’t even see the bruising, although I could feel it for over a week.
I’ve solved the problem now, by buying a set of ankle weights, that you strap to your ankles. Now I can do the weighted leg-lifts without trying to hold a dumbbell between my feet.
Hi, love your tag…makes me think of Puff the Magic Dragon…very lovable.
I admire your efforts to keep going. Some years ago, in my early MS like days, a physio said i would never get my stamina back.
But im gonna mention the dreaded w word! Going on a cruise will be a wonderful opportunity to see other parts of the world and i imagine less hectic than other types of holiday. Its that tv ad i`m thinking off. They say you only pack once.
What about having a wheelchair on hand, just incase you need a rest? I often see people pushing an empty chair and perhaps they enjoy their trips out in the knowledge that should they suddenly weaken or tire, their seat is to hand.
To me this would be really useful and you wouldn`t have to miss out on seeing as much as possible.
If my suggestion isnt any good, then Im sorry about that.
I have spoken to my MS nurse about the very same issue and she said that I was quite simply over doing things and is a ‘side effect’ to MS fatigue becaue the shaky feelings always happened after some kind of activity - even if it was just a walk up two flights of stairs which I used to do daily. When I started to talk about it she gave me that look that said…yeah yeah yeah…that’s down to something obvious that I never even considered’ It kinda justified it for me and she said I need to attend her fatigue management course.
So I would say it could be related to fatigue that you may not even know you are suffering from and to just slow down - like I am about to do, hard as it is xxx
Poll, I’d take a wheelchair if we were cruising from the UK, but it’s a fly-cruise. The wheelchair would end up in the hold, no matter what I said about needing it to get off the plane. (I don’t, but that’s not the issue here.) Putting it in the hold runs the risk of it being damaged, and a damaged wheelchair is no good to anybody. It’s a good thought, though.
Wendy, I know exactly what you mean about feeling shaky when you’re not shaking. That’s what I’m experiencing with my ‘weak, shaky’ feeling. For me, the test is my hands and arms. I think they’re shaking, but they’re perfectly steady when I hold them out and look at them…
Amanda, fatigue is always an issue when you have MS. I know I’ll have to be careful how much I do while I’m away. I also know that I may need a few days to recover from the holiday (), no matter how careful I am.
It’s a lovely day for a walk - sunny, but not too warm - but I’m still shaky from the weekend. On the one hand, I need to exercise to get my weight down. On the other hand, I’m worried about making things worse. Decisions, decisions!
Hi, me again…do you think it might be worth ringing the cruise operater to ask if they can supply you with a manual wheelchair, on a loan…maybe for a hire charge.
I’m not diagnosed but I experience this, I get the burning pain and fatigue as if I’ve run miles are walking a couple of hundred meters, my legs then go very weak numb and jelly like so much so I have to sit down.
I gather from what I read and people I’ve spoken that a lot of people with MS and also limbo-landers experience this.
I’m not diagnosed but I experience this, I get the burning pain and fatigue as if I’ve run miles are walking a couple of hundred meters, my legs then go very weak numb and jelly like so much so I have to sit down.
I gather from what I read and people I’ve spoken that a lot of people with MS and also limbo-landers experience this.