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Can people with mitochondrial disease exercise?

Is Exercise a New Year's Resolution for People Affected by Mitochondrial Diseases?

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NEW! Click here to download the Mitochondrial Myopathy Exercise Guide from Vancouver Coastal Health

Exercise intolerance is a hallmark characteristic of mitochondrial disease (Mito). Adults and children with Mito typically are unable to withstand intense physical activity, and often require more rest, oxygen, carbohydrates, and fluids following any physical activity. In other words, even low-impact or small amounts of exercise can leave a Mito patient feeling "wiped out", complaining of fatigue, shortness of breath, weakness and an increased heart rate (tachycardia). As a result, for years doctors have recommended maintaining a low activity level to their Mito patients.

So you think you get to be a couch potato because you have Mito? Not so fast. Turns out, a sedentary lifestyle may actually NOT be keeping your mitochondria functioning at their best. Recent studies published in the BioScience Reports (a publication of the Biochemical Society) in 2007 found that the mitochondrial function in muscle cells of people who were exercising was both more effective and more efficient. The idea of exercise training as a treatment for mitochondrial disease began after numerous research studies found beneficial effects of exercise on healthy mitochondria. However, the question remained: How will exercise impact patients with mtDNA defects?

The results are encouraging. Groups of mitochondrial disease patients who participated in 12-14 weeks of exercise experienced an overall benefit as a result of their increased activity. The benefits were similar for patients participating in various types of exercise as well, including endurance training, aerobic conditioning, or resistance training. As a result, exercise is now being considered a possible therapeutic approach for people with mitochondrial defects. According to the published studies, exercising patients demonstrated a higher baseline activity tolerance, less deconditioning and an overall better quality of life. Even more convincing, the beneficial effects experienced during the exercise training subsided when the exercise training was stopped. Mitochondrial function improves as a result of exercise, as shown by a better use of oxygen, nutrients, and efficient energy production.

It's still hard work. The theoretical and proven benefits of exercise don't change the hallmark characteristic of mitochondrial disease - fatigue. Exercising is really tough for many mitochondrial disease patients. Margaret Klehm, nurse practitioner in the metabolic clinic at Tufts New England Medical Center gave MitoAction members some advice about exercise training.

"Start slow, and be prepared to build up your tolerance very, very slowly," she says. "Endurance exercises, like swimming, walking or stationary bicycling are best."

Always stop the activity before you or your child experiences pain. Resistance exercises, like leg lifts or resistance bands, are also useful.

Don't be afraid to try something new, start slowly, and be realistic about how much you or your child can tolerate while slowly increasing the intensity and duration of the activity. For mitochondrial disease patients, doing this over time (months) can actually improve the individual's baseline (baseline refers to the amount of activity that can be typically tolerated without experiencing negative symptoms, such as extreme fatigue, pain, shortness of breath, etc.).

More research is needed, but the proven benefit of both mitochondrial function as well as ability to tolerate activity is encouraging to adults and children who have mitochondrial disease. Consult with your doctor or physical therapist to create an exercise plan that makes sense, and plan to literally, "take it one step at a time".

Have ideas about starting and sticking to an exercise regimen for Mito patients? Post your thoughts here!

Cristy Balcells RN MSN

Registration (free) is required for posting comments. Click here to register, then login and click the Comments link at the bottom of the article.


Based on the January 4, 2008 general MitoAction meeting with Margaret Klehm.

Full recording (4.8 Mb, MP3 file)

References

DiMauro, S. and Mancuso, M. "Mitochondrial diseases: therapeutic approaches".Biosci Rep(2007)27:125-137.

Gardner, Craven, Turnbull, and Taylor. "Experimental strategies towards treating mitochondrial DNA disorders".Biosci Rep(2007)27:139-150.

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Comments

beck7422's picture

beck7422

07/04/2009

I have been kicked out of a gym for falling off the equipment paralyzed and unresponsive. Although I can swim, when I try to exit the pool I fall back in paralyzed, unable float, and start to sink. I did benefit once from having an OT visit me in my home, but the benefits quickly went away once the OT visits stopped (due to insurance not covering it). The physical therapist didn't know what to do with me when I was paralyzed or non-responsive. One even forced me to go to the ER (which is almost always a total waste of time). I had opened the door and fell right in front of him because cold draft took me down.
Tina_EvesMum's picture

Tina_EvesMum

07/05/2009

Eve is so exercise intolerant she falls asleep whilst Physio is doing passive movements on her limbs. Just sat in her wheelchair trying to smile at people talking to her exhausts her. Tina
cellolover's picture

cellolover

07/05/2009

I know what you guys are talking about. On a good day I can exercise if I follow all of the guidlines in the exercise guide, but if it's a day where I have to choose whether I want to get dressed or brush my teeth then I just skip exercise!
lorimar's picture

lorimar

07/08/2009

I understand totally, our choices can be so limited I try and do,some light stretches, then exercise a little throughout the course of the day. I'll even give up a sink full of dishes so I can, we all need to make sacrifices.I'm really not making light of this subject.Most days like you I have to forgo all hope of exercises.Pain is another obstacle, for me...............God Bless...Lori:)
ldousza's picture

ldousza

09/02/2009

Yes they can do exercises but those exercises should be light. Mostly people in the above said disease start using legal steroids which is harmful rather than useful. Therefore, its better to avoid these things.

bred881's picture

bred881

10/21/2009

Test

 

 

Sorry would you please explain what you are testing?

Mysterious Hyperlinks are not welcome.

Thank You

Moderator

Liz's picture

Liz

09/29/2011

I have used this approach for many years. I wil start out very very small, with movements in bed if I have to. Even after one winter where I had to have physical therapists in to the house to try to help me, I recovered enough to now be out walking and able to do some strength training at home. Going slowly as to not set yourself back is the key. It is amazing to me to be able to do more exercise and I love it. I also had some thyroid medication adjustments that increased my exercise tolerance. I feel worse when I don't exercise. I do have set backs where I crash and have to start all over again, but I have confidence that I will get back with patience. I still have stamina issues. I can be active n the morning but I rest n the afternoon with intermittent small periods of mild activity. But I'm happy to not be in bed all day.
nicks99's picture

nicks99

11/22/2011

Your Fitness and exercise program requires a good start. You can start your Fitness and exercise program simply with walking.