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Bob,

I can say from experience that proper exercise for MS patients is beneficial...but I stress the word "proper". A number of years ago, Marg enrolled in a special exercise program at the March of Dimes. They took measurements similar to those in the trial that you posted and the results were very similar.

But when it comes to MS, the therapist has to be aware of the fine line between too much or not the proper exercise for the patient.

Harry

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From an MS patient I can tell you that exercise for us is like the baby bear's porridge. If you do too much, you waste your reserves and fight the fatigue you are trying to overcome by being in shape. If you don't exercise at all, you get weaker and things like bladder and bowels don't work as well. I don't think it's the "expert" job to find the middle ground. Like everyone's case of MS, it is unique to the patient. Therefore I strongly feel that simply by making some exercise an absolute given in your life, finding the right amount is done much better by the person experiencing the effects of doing too much or too little.

I do, however, agree with Harry in that the therapists ought to be aware of the fine line that exists, but rather than set it for the patient, they need to be acutely aware of that line and make adjustments based on the patient's feedback. In other words, coming up with what you should or should not do in terms of effort should be a process of trial and error based on how it makes the patient feel.

I started lightly exercising again after many months off because I was making myself worse by exercising too hard. Now that I've 'eased' back into it, I'm seeing some benefits in fatigue and strength, but am not overdoing it and making it easy for me to say "exercise is just too much for me", which I was saying.

Loobie,

I do, however, agree with Harry in that the therapists ought to be aware of the fine line that exists, but rather than set it for the patient, they need to be acutely aware of that line and make adjustments based on the patient's feedback. In other words, coming up with what you should or should not do in terms of effort should be a process of trial and error based on how it makes the patient feel.

From being involved with Marg's exercise programs over the years, I can say that you have hit the nail on the proverbial head!!

Harry

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What I was seeing was not necessarily what I would call permanent, but the weakness and fatigue I was having were gradually increasing until I ceased exercising. Then there was a period where I felt "better". But then after months of not exercising and getting into that pattern, I started feeling weak again. It's such a high wire dance. Like I said, too much: BAD, not enough: BAD, just right: GOOD . I can say that some of the worsening stuff I was seeing during that period of time, like leg weakness, fatigue and dizziness, have stayed with me until I started exercising again. Now that I've started that, they are "coming back" a bit, but I also think I had multiple relapses this year and all of that could also be due to that.

All I know is if I am not a thickheaded, prideful about how hard I can push myself type of exerciser, then exercise makes me feel a little stronger and more stable on my feet. So I don't really know if the exercise caused any of the damage. All I can say for sure is that moderate exercise does have a definite, positive, physical effect that feels like getting better.

I wonder if the amount and intensity of my running is hurting me? So far I haven't had any negative effects but could it be a concern?

Matt, it's a good question. I've looked around quite a bit for studies on MS and exercise. There has been quite a lot of research on the effects of moderate exercise on people with MS (moderate meaning around 60% VO(2) max for 30 minutes, or less). The results seem to be pretty conclusive about moderate exercise being beneficial. Unfortunately, I can't find anything on more intense exercise and its effects. There really needs to be a study where people with MS try somewhat higher intensity and/or longer duration workouts. At the other end of the spectrum, as the one-time poster here Tonyjegs pointed out, if you do a marathon and end up in the first aid tent, on average you have 40 times the normal level of IL-6 (inflamatory protein) in your system, and that's probably a bad thing for people with MS. But what happens to us in the zone between "moderate" exercise and requiring first aid after running a marathon is a mystery.

Matt,

I hope I can help with this. I was a very intense runner for the first five years of my MS. I can't say whether the actual running hurt me or not. I can tell you from a stress relief from dealing with this, as well as from a bladder and bowel standpoint, it helped immensely. However, when the wheels started falling off, they came off in a hurry, and I imagine my running maybe hastened the process along. It either did that or it simply made it more noticeable since everything you have going on is amplified significantly at the end of a good run.

I was running about 4-5 miles per day after a full days' work. Like I said, I loved it and wouldn't trade those times for anything since I know the strength I had as a foundation from it were helping me through relapses.

The first thing I started noticing was L'hermittes really bad when I was done with my run. I would look down and it was so strong that it would make me involuntarily snap my head back up. It was like putting my finger in a socket. At first, it would only stay that intense for a few minutes. Then after about a mile and a half I kept feeling like I was going to fall forward and was very wobbly but kept pushing it and finishing my runs. I feel that if I had listened to my body and backed off somewhat I could have kept the distance up a bit longer, but if you want to know the truth, I don't think the intense running was anything but good for me. When it started going downhill, I was at about the 5-6 year mark after initial diagnosis, and it seems very typical that it gets more 'real' around that time period anyway.

To sum it up, if I had it to do over again, I probably wouldn't back off a bit. I loved running like I did and it was so beneficial to body and spirit for the first five years. That is when it was very hard for me to accept emotionally and I think it helped me through that. Now that I'm at the stage I'm at, I do think that pushing it is detrimental, but I don't think it was when I could handle it. I've been down for a few days here lately after my attempts to try and have some running be part of my exercise. I now can make it just about a half mile at a pace that could really be considered fast walking. I don't really know how much it helps since it hurts while I'm doing it, but honestly it still gives me a feeling of well being just to be participating in my own wellness and I think that is important too.

To sum up my rambling, just listen to your body and adjust your workouts accordingly. If you can still stay intense, I say go for it. I know I would still be doing it like that if I was still able.

Exercise was not a part of my daily routine when I was working 10-12 hour days sitting at a desk. But, since retiring, Pilates has been my base of a "new life" routine for me. You can find many articles about the benefits of Pilates for MS. Pilates strengthens the core muscles which is good for the MS person because our core muscle strength is degraded. Check your own - are you leaning forward when you walk?

MS'ers have a problem when they get too many nerves activated. So, if for instance you are running - the first mile you are on flat ground; the second mile you start on a small incline (your legs and feet need to adjust therefore more nerve activation; the third mile you are back on flat ground but it is rough and the wind starts to blow - new adjustments need to be made and you also have to account for the wind which is an external sensory activation. What about adding cold or heat? The less complicated your exercise routine is, the easier it is for you to accomplish.

Anyway, I feel much better after exercising, and I am stronger to really enjoy those days when I am having a "good" MS day.

Sharon

P.S. I was in a trial exercise program for MS which was sponsored by the Veterans Admin. We used a machine called an Iso-Pump developed by an Australian doctor. Last time I checked, the results had not been posted.

How can exercise be bad for ms other than you getting hot and making it harder for the nerves to fire. If you can run , work out with weights, pilates or what ever just do it. The person doing the exercise knows when enough is enough healthy or sick.

robbie wrote:How can exercise be bad for ms other than you getting hot and making it harder for the nerves to fire.

You've partly answered your own question....getting too warm is almost never good for an MS patient.

MS patients, due to the very nature of their illness, have areas of the body where the muscles simply don't work properly. A good therapist will be able to identify this, initiate the proper exercise to be done and thus avoid possibly injuring the muscles in this area.

Harry

I think this forum is mostly talking about running and if you are still can at this point i would encouage it. Do you think people should stop running when they still can? When i mentioned heat this can just be sitting in the sun no exercise at all, but sitting in the sun is good right, vitimin D and all.

robbie wrote:I think this forum is mostly talking about running and if you are still can at this point i would encouage it. Do you think people should stop running when they still can? When i mentioned heat this can just be sitting in the sun no exercise at all, but sitting in the sun is good right, vitimin D and all.

While running is certainly exercise, there are all kinds of different exercises anyone can do to improve certain aspects of their health. If an MS patient can still run, that is great but like I've said with MS and exercise before, there is a fine line between doing too much and not enough to benefit you.

Some MS patients can't sit in the sun for more than a few minutes, regardless of how it might be for getting vitamin D. They heat up so quickly that they become slow and lethargic in a very short time and that can last for a few hours before recovery is possible. You have to know your own body and when it tells you that trouble is coming, you have to react accordingly.

Harry