I was just wondering what exercises do you do to help with muscle strength and mobility? Also wondering if anyone had opinions on L-Glutamine powder and if it helps at all?
Really, I'm just looking for any helpful tips that you may have for dealing with CMT. I'm 20 years old and have just been struggling with accepting the fact that I have it and am looking for ways to deal with it. It's hard for me because I don't know anyone else who has CMT (other than family members) to talk to and would love to hear from other people
Dear SK :
WELCOME TO AN EXCITING WORLD OF A VERY LITTLE AND UNKNOWN PAIN-IN-THE-A** DISEASE KNOWN AS CHARCOT-MARIE-TOOTH.
I understand, from what you wrote, that you cannot find anyone with C.M.T., Well, guess what, so far, I am the only other person to have this unusual condition. I'm truly very sorry that you were cursed with this stupid disease, no other person as young as you, should not have to go through his life suffering the symptoms you have said that you have.
Being a person who has been suffering with this reched disease for over forty six years, I'll give you my opinion as to this disease, THIS IS THE PITS. No one should ever have to go through what I go through every couple of days, PURE, UNADULDTERATED S*** PAIN. I can complain about my periodic paralysis until the cows come home, so to speak, it isn't going to do anyone any good, so I won't, but to tell you what life is going to be like with your C.M.T., you;re going to have to experience it for yourself. I don't mean to be cruel, let's just say, that your life will be interesting. But, I will be here, always, to guide you through this journey of life.
If I have any helpful tips to give you in regards to dealing with yout C.M.T.,: just take your meds, try to keep a positive frame of mind, don't just sit around and let this thing beat you down, fight it!!! if you let it beat you down, it will win!!!!! don't let it. I've come to think that this disease is a game, if you let it win, you lose. fight it!!!! it's a f******* test, just like life is. don't be a fool and think that this condition of yours isn't just a bunch of bull****.
I find that exercise for me doesn’t work as well as with other non-CMT people. For most it makes them feel better but it just wears me out. Keep active, of course, but a workout as such isn’t good for me. I wish, however I had done more stretching exercising to maintain my flexibility. I am 72 and have had a very active life playing sports, golf well others not so much. A good attitude is your best weapon and wield it mercilessly.
Dear Dave :
You're absolutetly right!!!!!! keeping up a positive attitude is alwas the best defense in the test of life and of this disease. I'm sorry that excersise seems to wear you out, if I over-excersise, this too, seems to play havvoc on my muscles. Buthearing from good friends such as yourself does wonders for my mind.
please keep in touch,
Yes, it is hard! As I always thought I was the only person on the earth to have CMT. I haven't met anyone in my area nor near vicinity. I wish I would because a support group would be nice. It is so important to stay positive, but some days you just can't.
I am looking for someone who can tell me if working the calf muscles would build or maintain the muscle???? As every neurologist has told me "no", but other holistic healers have told me "yes". This is one of the many things that bother me being a woman. I never wear shorts, dresses, skirts, because of this. I will only wear long dresses...I can't wear any kind of shoes, heels forget it, no ankle support forget it too!
I will say though, that a positive attitude helps. Its all about "Law of Attraction". My son also has been diagnosed and he is 14, haven't tested my other 10 year old. I was very sad when he was diagnosed, but there are worse things out there that I tried to console myself in this way.
The important thing that I have learned is just keep moving to the best of your ability. I am 57 and have trouble with balance so I do bone strenghening exercises 3 times a week in the building where I live. Some I can't do standing so I sit and improvise.....Walk as much as you can tolerate that is what I have been told is the best thing for us. But if you can swim...then swim. If you can dance....then dance. If you can ride a bike......ride as long as you can. Just keep moving as much as you can tolerate.
You may have days that you feel really strong and have lots of energy and want to get a lot done. I have done this and couldn't do anything for the next 2 days so it is good for us to pace our selves. It is a hard road but ir we just take it day by day we will do fine.
I am not familar with the L-Glutamine so hopefully someone here will be able to help you with this.
Have a wonderful weekend and make the most of every day! :)
I have had CMT all my life but would not let it get the best of me. I joined the Canadian Armed Forces when I was 18 and served for five years. Then I managed to get a job with Crash Fire Rescue whereas I served 28 years. Yes I had my difficulties. For me I found that lots of weight training, braces, and a positive attitude helped me succeed. I wear braces on both feet now to stop my drop foot and ankle roll. What a difference I can walk 4 or 5 miles now with no problem. I squeeze a small soft ball constantly while walking and this helps my hands stay stronger. Yes this is a very bad disease but life goes on I am 64 years old now and I ride a motorcycle. mud bogging is a favorite, and I ski.....I bought braces called Blue Rockers and they have changed my life. They are made of Carbon Fiber and not only do they stop drop foot, they give me great balance and my legs do not get tired. They are expensive but there are organizations that will help cover the cost. Picture of my foot braces included.
Thanks Terry for posting a picture of those braces. I have never seen anything like these before and am going to ask about them the next time I go to the Muscular Dystrophy clinic
Dear Carm :
I still feel that there is no one in my general vicinity, of in the world who has ever heard of C.M.T., or knows what pain I go through when I suffer the periodic paralysis that I do. Of course, having a positive frame of mind does help, but still, it isn't easy to go through. It is always good to have a support group that you can reach out to. But for me, Where was tyhis support group when I was diagnosed with this stupid condition, I ask this because nobody had ever heard of this disease when it was given to me, and not even my own doctor seems to care about it anymore.
I don't wear shoes anymore because they bother my feet, and when the atacks of paralysis conme on, my legs hurt so bad that just touching them really hurts, so much so that wearing jeans really bothers them, so i ether wear sweatpants, or nothing at all, which is just fine with me, because I'm a nudist at heart.
I'm really interested in hearing more about yourself, this way I'd get to know you more.
Hi Sara! This disease isn’t much fun is it? I was a runner and into working out a lot . When my CMT got real bad I had to quit work,no more running etc.Well, I always danced,so I still dance and do floor exercises for core strength etc. I also realized I could walk if I pushed a stroller. So,I put my adorable little ShihTzu Bella into the stroller and away we went. I worked up to 15-18 miles a week! She loves it and I can walk like I used to. I try to get exercise in anything I do! Just keep a good sense of humor through all of this. I had a heat attack in Sept. Four bypasses. Another hereditary disease! I got them all. Anyways,never give up! Don’t let this dictate your life! Try and try again! Good luck to you!
Dear Karen :
I love your atitude about this disease!!!!! No, never give in to this, or life will beat you down. Develop a good sense of humor, and dealing with this will be a lot simpler than just hating everything.
Dear Sara, I have no personal experience with L-Gluatmine, but here are some postings from the archives of this site about it.
Replies to This Discussion
Permalink Reply by johnnyboy on January 30, 2014 at 7:17pm
just want to tell everyone the ive seen about 30 of them tell me they can do nothing for me and there is no medication and no cure my daughter is in the army the army tell soldiers to take L Glutamine it @ GNC its amino acids it helps the muscles repair themselves L GLUTAMINE STOPS THE MUSCLE PAIN!
l attempt regular visits to the indoor pool for water aerobics. 2-3 times a week when it's open at the local college. l do as much activity during the 50 minute secession as l can.
l ride a stationary bike 5-7 times a week for at least 17 minutes, that's about as much as my rear can take without going completely numb. lf l skip more than one day or sometimes even one day the fatigue in my lower legs is terrible.
l have been to PT a lot since July 2012 after hip surgery and to hopefully prevent shoulder surgery.
Stretching at least some daily is a huge help. Walking too much is torture for my feet. Hoping to get that straightened out.
There is absolutely nothing about any type of exercise that makes me FEEL better. But if l don't l do feel worse for sure.
Good luck to you! ~Tami
Dear Tami :
I surely know what you mean by " excersise in modeations does wonders for me ", at least that's what I surmise from reading your letter. I know for myself, after I had toe-lengthening surgery, and especially after recovery, I sought lots of excersise, and I kept wondering why I was so sore, and why my episodes of periodic paralysis were coming on so frequently. It was because I kept pushing myself so hard.
Exercise is great for the body, but you have to know your limitations. A car can go really fast, but a car without fuel is just a driveway ornament. The body can only go so far, and if you push it beyond its limits, its going to give up. I hope I'm not discouraging you from daily exercise, that's not my intention, I'm just saying just take this slow, and work at your own pace. Remember, exercise knows no schedule, but if you force too much upon this wonderful machine, it will strike back, and quite painfully.
Very true Jayme. l spent too many years doing nothing! Literally not much activity at all. My whole body suffered. Then l started having surgeries and boom, l went downhill. Got diagnosed with CMT and well, l am glad to know finally that yes, there is something wrong with you. Then came the diagnosis of diabetic too. WAKE UP call. 2 hip surgeries after that and now working on my shoulders. Not wanting anymore surgery so now l must do what l can to prevent my body from going downhill some more. Atrophy has begun in my legs which makes me real unhappy. Just started working with a foot dr, so we will see where this all goes. Thank you!!
I know all about muscles atrophing!!!!!! After my toe surgery, I balloned up like I was on bad steroids. I never want to feel like that again. My mom threatened to kick my a** if I didn't at least try to exercise, finally I gave in, and slowly but surely, the execises worked, and I leaned how to walk, for the sixth time.
Unfortunately, after the next four years, my legs just gave in, and said to my body " enough's enough ", and I stopped walking, and now I use a power chair for my mobility. but just because one window closed, does not mean that another window, ( My Brain ) opportunity did not open up for business.
There's always a pot of gold at the end of the rainbow, we just don't always see it.
Hi Sara. I have found that doing leg presses are very helpful for me. Before I was diagnosed and started doing physical therapy daily, I couldn't walk up stairs without pulling myself up using my arms. I even had difficulty just getting up off of the couch or up from a chair. But after months of doing leg presses and treadmill I can walk much better and climb stairs without too much trouble.
Over the winter I took a break from exercising, just staying in to keep warm, since the cold really hurts my hands, and I am back to having trouble with stairs and my husband helps me up off the couch again. So back to the gym for me. Just be careful not to over do it. Don't do anything that hurts or pulls on your arms. Pool exercises are great for CMT'ers, water aerobics, swimming, biking.
Not sure about protein powders benefits. Found them to be too expensive to try.
Hi Sara, my 3 year old son has CMT. Classic high arches, hammer toes, fatigue, wide gait, very very poor balance, can't walk up or down steps. Before I realised he had CMT, I put him on L-Glutamine, Selenium, B12 and Acidophilus. This was due to a blog a read from a mum who's child was diagnosed with Duchenne muscular dystrophy. Anyway, I notice a great improvement in his balance. I have taken him off it in the last 4 weeks and I believe he has gotten worse. I am going to do a video of him walking and measure his calf, then put him back on the supplements. I will revisit it again in 2 months time and see if there is any improvement, decline or if he has stayed the same (which would also be a positive too). I will let you know how we go.
I'm 31 now, found out I had CMT two weeks before my 18th birthday (not the greatest present).
I work out 5-6 times per week at the gym, 45 mins cardio of bike and/or crosstrainer and 45 mins of weight training.
I've always been an active person so I think being fit and healthy means I don't experience the tiredness as much as some people with CMT.
I either wear normal sneakers with leg braces or I wear nike hightops (canvas ones that can be done up tightly around the ankle) which were a life changer when I found them as it means I can wear long gym leggings like everyone else at my gym rather than baggy trackies to would hide my brace.
I'm pretty lucky that I can still wear wedge heels (as long as I don't have to walk too far or fast) which is great.
I love winter as wearing boots makes walking easy and there's plenty to choose from.
L-Glutamine is in the protein powder I have daily but I don't take it as a separate supplement so I cant really comment unfortunately.