Hi, I am new to here and would like to find out if anyone else struggles with exercising due to leg weakness/mobility issues and fatigue.
I am really keen to be able to exercise regularly but even a small task such as putting shopping away or having a shower wipes me out. I use a stick for walking except when around the house, mainly for balance but increasingly to avoid falls. I can walk about 10 minutes with a stick then struggle to get back home, because my legs start to ‘drag’ and I am so fatigued. I have to sit down for about an hour on returning home and sometimes the impact of the walk affects my fatigue levels for the rest of the day.
I’m finding that the pressure to exercise - because it’s supposed to help with MS - is having a toll on my mental health too because I constantly feel like I’m failing and not exercising enough. I am worried that I can’t improve my stamina etc because such a small amount of daily activity is all I can manage.
Does anyone else have similar issues and any tips or advice please?
Your post really chimes with me. I need to exercise but it does wipe me out. I totally get the notion that having a shower is totally exhausting. I asked my neurologist about this and was told that because the messages on the secondary nervous system are compromised, the automatic balance response to info from toes etc just is not there. So we adapt by using other parts of our bodies (eyes , conscious part of the brain etc) which is more energy intensive. So I would say that you need to be smart about pacing yourself, try to learn when and how much to push and accept that your new normal has significantly different thresholds and boundaries from your old normal. I now have an exercise bike next to my bed so that I can fall out of bed, do a bit of exercise, stop and then do some more if and when I have some spare energy. For me it is all about the energy budget, if I choose to prep a meal or clear up then … no extra exercise. Fingers crossed you find a good balance and dont waste energy fighting it or by being angry.
Get a physio to check you out and identify areas of muscle weakness, that need strengthening. A programme of exercises specific to your needs can only help.
If the leg dragging is caused by drop foot, then referral for a FES assessment is a good idea.
Functional electrical stimulation (FES) | MS Trust
Thank you. I do have a programme of physio exercises which I follow - I have seen many physios over the years! I just wanted to be able to do some aerobic exercise as well but it’s difficult to find a balance as my energy reserves are so low despite following advice regarding diet etc. I guess I just have to accept that I can’t do both if I want to do other things in my day!
Thank you, it’s so helpful to know that I’m not the only one who has low energy reserves! I’ve heard many times that exercising will help with this, but I’m yet to find enough energy to do sufficient exercise to test out that theory! All that happens is that I use up all my energy trying to exercise - in short bursts - but then it takes so long to recover that it doesn’t seem worthwhile.
For example, yesterday morning, after a good night’s sleep, I had a shower, did my physio exercises for 10 minutes which are mainly lying down ones - rested - put half my shopping away (had to get someone else to do the other half as I was done in by that point). Then after an hour of rest I went for a 5 minute walk, stopped for 10 minutes then 5 minute walk back. As a result I had to sleep for nearly 2 hours in the afternoon. And even after sleeping I struggled to do anything else for the rest of the day and went to bed at 9. I have previously tried the exercise bike in the morning but was advised that this was using up all my energy before the day had begun and maybe to try it at a different time. But later in the day I often have no energy to even try! I have a sedentary job now, working from home (I had to stop being a primary school teacher because it was having a negative effect on my health) but I try to exercise before I start or at lunch time. I try to do some exercise every day but I just don’t seem to have enough energy to build this up to a meaningful level. I keep active around the house doing light housework but I mainly want to be able to do some aerobic exercise for health reasons. I follow the Mediterranean diet on the whole although not as strictly as some, but I’m relatively healthy in other ways. I don’t take any medication currently.
I’m not angry , just sad and frustrated that I can’t seem to improve! I blame myself. I wonder if I’m living in false hope that I can ever improve and whether I should give up trying for the sake of my mental health? Because continuously trying and failing for so many years has not been good for me!
Thank you for this, I have tried yoga previously but it may be worth another try.
As with exercise, only you will learn the best balance between determination, frustration and acceptance. (Plus, what you learn one day might be 180 degrees out on another day)
Best of luck with this continuous learning.
No, don’t give up trying. Instead give yourself a big pat on the back for what you do achieve. Be proud of what you have done. It may just be 5 minutes, but think of that as a good 5 minutes. If possible, try to make those walks as enjoyable as possible - whether it is just out to feed the birds, or look to see how a plant has grown, or enjoy a bit of sunshine. Have an enjoyable purpose, rather than exercise for exercise sake.
I’m a mad keen botanist, but used to really enjoy long walks too. I found that by concentrating on the botany I stopped fretting about how slowly I was walking, or that I wasn’t able to get from A to B. And, instead of being frustrated that I couldn’t get to places, and being very aware of how heavy my legs feel, I now find myself ending the walk thinking ‘I’m really tired, but that was lovely’. And then I follow that up with resting, relaxing doing something enjoyable - like listening to the birds in the garden, or letting my mind wander somewhere nice, rather than sitting or lying down and being frustrated that I was doing nothing and that was such a waste of precious time! It might feel very self-indulgent at first, but if it takes that long to rest, you might as well make it as enjoyable as possible! Same with exercise. It is a technique that has worked for some with ME, and for some with Long Covid fatigue.
I’m wondering how much energy your job takes up. Do you feel better on days you don’t work, or when you are on leave? I only say that, as I found that sitting at home doing work on the computer makes me then too tired to attempt exercise, and I go in a downward spiral. I’m currently on sick leave, coming up to 6 months, and both I and my GP think it better to concentrate on getting some exercise with the energy I have, and getting a bit of blood flowing and raising endorphins being out in fresh air, than using it being sedentary and staring at a computer! It is about trying to get the most benefit (for yourself) from the energy you have. I have seen some improvement by adopting this approach. And it was very nice to hear my GP supporting it.
But then again, not working can raise anxieties about money, so it is about trying to find the best solution all round - for your mental health and physical health. It is a difficult balancing act, that’s for sure.