Anyone with Muscular Dystrophy?

kelsiehoagland
kelsiehoagland Posts: 107 Member
in Health and Weight Loss
Hello :)

So, I have MD, specifically CMT type 2. What have you learned through working out and losing weight? What works for you?

It seems that I can't do more than 3-4 exercises per body part because I feel so much intense pain the next day, to where I have to push myself to get out of bed.

I also feel like I have to be really careful with my body, because I seem to get injuries so easily. For instance, one day I was doing that clam move where I close and open my knees while laying on my side while keeping my feet together, and the for the next week or so, my hip was so messed up that I had a really serious limp, severe pain, and I couldn't workout. And recently, I've been experiencing sciatic nerve pain when going up the 2 small flights of stairs at my doctor's (okay, therapist's) office. It doesn't hurt while I'm doing it, but later in the day the pain will come and totally floor me! It's happened twice now (last week and last night-today) and it's terrible.

I've also learned that I can't do lunges, seriously cannot do them, it's not an issue with pain, I just can't do it haha. I also have difficulties with squats and getting down low without my back following my hips, that may be related to my spinal fusion (about 6 years ago), buuuut I don't know.

SO anyhow, what works for you? What kind of cardio and strength training do you do? What about your diet? Tell me about your experience! (:

Replies

  • sabbers1982
    sabbers1982 Posts: 16
    Hi there. I have FSH MD, I will have to look up your version though not too familiar with it. I too have problems with lunges and squats lol. I just do exercise bike and some dumbell work outs. But can't raise them above my head, it really sucks because I enjoy it, really wish I could do more. Haven't been keeping my diet that clean as of late.
  • suziecue66
    suziecue66 Posts: 1,312 Member
    So with those muscular dystrophies you don't end up in wheel chair? My son has Duchenne Muscular Dystrophy.
  • sabbers1982
    sabbers1982 Posts: 16
    I use an electric Wheelchair when I go out as I find it hard walking long distances and getting up and down off chairs, or if I fall over I find it hard to get off the floor. But I know a lot of people with FSH that haven't gone into chairs or started using one until their 40/50's. That's why I really want to work on my fitness not just my diet. I can't get the muscles back but I hope to maintain the ones I have.
  • suziecue66
    suziecue66 Posts: 1,312 Member
    I use an electric Wheelchair when I go out as I find it hard walking long distances and getting up and down off chairs, or if I fall over I find it hard to get off the floor. But I know a lot of people with FSH that haven't gone into chairs or started using one until their 40/50's. That's why I really want to work on my fitness not just my diet. I can't get the muscles back but I hope to maintain the ones I have.

    Good luck with it all - working on your fitness and maintaing muscles.
  • kelsiehoagland
    kelsiehoagland Posts: 107 Member
    So with those muscular dystrophies you don't end up in wheel chair? My son has Duchenne Muscular Dystrophy.

    There are quite a few different types of MD, and with mine, CMT, one doesn't always end up in a wheelchair. A lot of the people I know with CMT that are in a wheelchair are overweight, so I think that weight is a huge factor in staying out of a chair. My grandpa, mother, sister, and I all have it and are all at healthy weights and haven't ever been placed in wheelchairs outside of surgeries.

    Good luck to you and your son. I wish you both the very best. Are you involved in any MD things, like summer camp? If not, you should check this out http://mda.org/ways-to-help/national-events-programs at the bottom, there's ways to contact your local MDA representative. Camp is wonderful. I went as a camper and will be a counselor next year. Your son would really enjoy it, I'm sure! :D
  • kerryann252
    kerryann252 Posts: 1
    Hi, My name is Kerry, I am 25, just shy of 16 stone, and only recently been diagnosed with FSHMD. I have always struggled with exercising, walking, sports etc. I have a pretty good balanced diet and only snack once a month. I love walking but find I can't do much. I also love swimming but just can't find the time to go..not when the pool is open anyways! Any suggestions as to how I can lose weight? Please help!!

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