We all know exercise is good for us. It increases energy, improves mood, and enhances overall health. It improves your social life and makes you look better, too. Any exercise will do, so long as it gets your heart thumping and your muscles working. But those of us with with multiple sclerosis (MS) must approach exercise with care.
The last ten years have been littered with reports that exercise in general and physical therapy in specific is good for us. These reports have upended the old recommendation that we rest as much as we can. Many of these studies show that with physical therapy people with MS develop improved walking, balance, a decrease in the number of falls, and even improved cognitive abilities. When they measured fatigue, studies showed improvement there, too.
It all sounds wonderful, right?
Don’t dive in quite yet. I have been to physical therapy many times since my diagnosis with MS, all but one for reasons unrelated to MS. Physical therapy worked — for sprains, muscle pulls and rehabbing a bad hip. But it failed the one time I went to improve my MS related balance difficulty. Until my most recent experience with physical therapy, I ended each set of sessions early because the extra demand on my schedule and the extra exercise increased my fatigue. Because of this experience I read the praise of physical therapy for people with MS with skepticism. My more recent experience shifted my view, but more on that later.
It took no time for this new research to convince neurologists and others to start recommending exercise and physical therapy for their patients with MS. It provided one more promising way to improve the lives of people who have a sword dangling over their heads. So why not try it?
Because of this I took a more serious look at the physical therapy research. My survey revealed that findings are far from conclusive, but there are exciting positive conclusions:
- Exercise is safe and does not cause relapses.
- PWMS can improve with physical therapy.
- Physical therapists can modify standard treatments for the particular difficulties of MS.
But there are also flaws in the research that undermine many specific claims.
- Researchers often only include subjects they believe will show benefit. This is called a selection bias.
- All studies fail to adequately account for fatigue. They are not to blame. There are no good measures for fatigue.
- All studies fail to use normal control subjects.
- Subjects dropped out. No one reported why.
Despite the flaws in these studies, it is safe to conclude that for most of us with MS, an exercise program, even if it is as simple as regular stretching, will be valuable.
Is it time to ask for a prescription for physical therapy? Certainly do that before you go it on your own. Though, once you have a safe program constructed, you can set your own schedule and pace.
Yet even without the outdated advice to rest as much as you can, MS still provides barriers to exercise. Sometimes viewed as excuses, these barriers are more fairly characterized as legitimate reasons for people with MS to say no when more exercise is recommended.
- People with MS have less active time than their healthy cohort. If exercise takes away from time with family and loved ones, or even ruins family time because of fatigue irritability, then priorities need to change. This can be done with the physical therapist, who may be able to alter the exercise routine to provide better balance.
- PT comes with financial costs. Even small co-pays may put a dent in your budget. Many people with MS work reduced hours or not at all, depending on disability support or a spouses earnings. This can also be approached with your physical therapist, who may have ideas of ways to adjust the number of visits, or who can send you off with a recommended home exercise course.
- Sometimes going to physical therapy takes all the energy you have. For some people, dressing, driving, and walking inside to get to PT might use up a day’s worth of energy. Sometimes home physical therapy is available, but often it is not.
Physical therapists have tried to address fatigue, but no standard exists. A full explanation of MS fatigue has escaped medical research, so we are limited to subjective lists to sort out what fatigue means for any particular person with MS. Lists of types of fatigue vary from one doctor to the next. I find this list to work best for me:
- Fatigue that comes from using muscles that are out of condition.
- Fatigue that comes when the wrong muscle has to be used because another is not receiving proper signals from the brain.
- Fatigue from poor sleep, which can result from many MS related causes.
- Fatigue from overheating.
- Fatigue that results when overused neural pathways shut down.
- Lassitude (an ill-defined reduced ability to initiate mental activity).
- Fatigue from sensory over-stimulation
- Fatigue from spasticity or resulting pain.
If you find a physical therapist who knows how to work with MS, the experience may turn out well. It is possible that you may be one of those people with MS who can get better balance, or improved strength, or even improved cognition or reduced fatigue. If not, a visit to a physical therapist may still result in help with assistive devices or a proper referral, as happened for me.
When I wrote the first version of this article I did so as I concluded my practice and accepted my disabled status. I resigned myself to spend the rest of my life working on doing my best to maximize the limited energy I had, energy that was depleted by all of the factors of fatigue mentioned above, plus significant hip pain from what I thought was MS spacticity. An astute physical therapist, after working with me for a couple of weeks, suggested that I have my hip evaluated for structural difficulties. The finding? I had a severely arthritic hip that needed replacing.
One year later after my hip replacement and two rounds of physical therapy that started very slowly to manage fatigue from MS and de-conditioning, I’m working independently in the gym and my mobility has improved dramatically.
Here’s what I learned during this time about how a physical therapist with training in managing MS will approach a person with MS:
First, she will not take her patient to “the burn.” That’s a recipe for painful fatigue. Because fatigue is the most common symptom of MS and the most disabling, all exercise needs to be adapted to the level of fatigue experienced by the individual patient.
When someone with MS has been so sedentary that they are deconditioned — meaning the muscles have been so infrequently used that they are functioning below their capacity — a physical therapist will take things slow, so much so that it may seem like little is being done. It is critical to give time to this early stage of rehabilitation.
In training physical therapists learn about physical stress theory. This theory explains how muscles improve. Too little stress and there is no gain. To much and there is tissue damage. Any sign of tissue damage indicates that exercise should stop until the patient has recovered. For people with MS fatigue adds a second indicator for when exercise should stop. If fatigue is allowed to become excessive, it will not only interfere with the ability for you to continue exercising, but will also impact your willingness to continue with PT and possibly with your quality of life.
The environment makes a difference. Facilities must be air-conditioned in summer. A cooling vest might also help keep core body temperatures low. Pre-cooling either in a cold air-conditioned room or with ice packs might allow for a bit more exercise. Adding a fan to the air conditioning might also help. This must be tempered with the awareness of individual symptoms. For example, a significant minority of people with MS have difficulty with cold temperatures or with blowing air.
A researcher discovered recently that interrupting an exercise routine with rest periods allowed people with MS to exercise for a longer total amount of time. Measured breaks may be part of the course of your physical therapy session. If they aren’t, you can suggest them.
A risk with this new physical therapy research is that it provides another opportunity for people to blame the patient when treatments are not successful or the course of the disease fails to stop. People with MS frequently do this to ourselves, mercilessly pushing into an overly ambitious exercise regimen that ends up putting us into a state of fatigue and all the anger, depression, irritability, cognitive dysfunction and lifestyle difficulties that come with it.
The physical therapy research is not strong enough to say that it will always be helpful to all people with MS. On the other hand, if physical therapy has been recommended and your anxiety about fatigue and weakness is preventing you from trying it, than find a physical therapist who is trained in treating MS and give it a go. The only side effects are temporary and easily managed.