CMT and Muscle Growth: Does anyone else... - Charcot-Marie-Too...

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CMT and Muscle Growth

cmt_exercise
cmt_exercise

Does anyone else seem to have trouble developing any muscle/improving body composition, even when undertaking a strict calorie-controlled exercise regime? Having spoken to my consultant, this may possibly be a symptom of CMT which has been ignored for decades, and I'd like to see how common this symptom is. The current thinking is that CMT only affects muscles attached to the longest peripheral nerves e.g. forearms, calves etc, but the more CMT patients I talk to, it seems to be that ALL muscles are affected.

67 Replies

Hi there, mjbk,

All I can contribute here is the fact that many years ago in my mid teens (when I was slender) I cycled 3 miles to school and 3 miles back every day for about 3 years , assuming that my ability would improve. Yet every single day I would arrive at school (and back at home) tired, sweaty, and out of breath. There were no significant hills. I also have memories of frequently having to use an enormous amount of effort to pump up the tyres. I had never heard of CMT in those days, and just accepted the situation. At least my shortcomings weren't on display to my classmates as they were with the horrible compulsory swimming, gym and team sports I learned to dread.

I think the thing to do with CMT is to try not to lose what you have, rather than hoping to become fit and muscular - by exercising moderately and regularly and not pushing yourself to the limit.

cmt_exercise
cmt_exercise in reply to Amanita

Thanks for the response Amanita, it's appreciated as there seems to be a trend that doctors seem alarmingly ignorant of.

However I have to disagree with the notion of simple maintenance for several reasons. Firstly and foremost, according to many neurologists, muscle growth and CMT should still be possible, therefore until it's shown not to be, then trying to improve ones health should always be a goal. Secondly, if muscle growth is hindered, then maintenance will be impossible as muscle atrophy will always come out on top, and finally, if muscle growth has been hindered since birth, then it'd be a situation of aiming to maintain nothing as adequate muscular growth hasn't occurred.

Also, whats extremely concerning and annoying is that there are plenty of safe, medication approved and regularly used drugs out there that help with muscle growth which begs the question why these haven't been trialled with CMT patients. I truly believe there's far too much an attitude from doctors of "you're not dying so live with it" rather than looking at ways of improving CMT patients quality of life...

Amanita
Amanita in reply to cmt_exercise

Well perhaps you may be right, mjbk - I am no medical expert. Though it still seems odd that all my bicycle-riding efforts produced absolutely no increased strength or stamina.

I really do wish you success in your quest for increased muscle growth and strength.

If/when you do find something that helps, please will you share it with us.

Hello to mjbk88, (Australia)

You do not actually confirm that you have been already diagnosed by a

Neurologist that you indeed have CMT, and what type: I have type 1a:

Your diagnosis would have been reached following DNA blood tests,

and possibly a Nerve Conduction Test (NCS), a physical examination,

reflex tests etc, including your full family history:

CMT is due to the transmission of hereditary factors of a gene mutation

disease passed from a parent to an offspring:

You cannot "Catch" CMT, you are born with it:

Sorry, no amount of physical exercise will allow you to 'bulk-up' your

muscles, as the basic component of a muscle(s) in your body, is missing

due to your p22 gene mutation:

Yes, by all means, keep exercising as long as you physically can, however

eventually, muscle wasting (atrophy) will occur in your later life:

Positive management / acceptance / adjustment / are the only way forward:

Best of health ......

John (Glasgow)......

Hi John, I'm fully aware of what CMT is, in that it's a genetic disease rather than a virus or bacteria etc, and it's CMT 1A I've been diagnosed with.

Were you told by a neurologist that muscle growth is not possible? I ask because this would be news for my consultant who is a leading one here in the UK.

Also, acceptance is completely the wrong point of view to take as it turns out there are drugs that can help e.g. oxandrolone, which in a study was shown to help with nerve velocity and increase muscle mass with no negative side effects. I'm surprised at the defeated attitude that some CMT patients have, in that no one has challenged the mantra of "exercise to maintain" if it's not going to actually produce any physical benefit.

Amanita
Amanita in reply to cmt_exercise

I have just looked up Oxandrolone, which I'd never heard of and personally don't fancy the many common side -effects (weight gain seems one of the less worrying) one bit !

Good luck, anyway.

cmt_exercise
cmt_exercise in reply to Amanita

Every medicine has side effects - ever taken paracetamol? Side effect: death! Honestly it's much better to look up studies and determine likelihood of side effects that way rather than from the information leaflet as it's a flawed technique used to create the list. I'll update here with details of I try it as it can potentially increase nerve velocity and reverse issues caused by CMT which is extremely promising!

Hi there. I have CMT 1a as does my son. He is very tall and very slight in build and your answer about Oxandralone has my interest. My son is fairly fit but his muscle mass is extremely poor and he wants to join the police. I fear he will fail his medical based on muscle mass alone. In all other things he would be fine. Have you tried oxandralone yet?

Ps: talk about side effects - I am an oncology RN and you should see the side effect profile of some of the drugs I give - most people would be horrified. I agree every medicine has massive side effects in the literature but they are not always common side effects.

Unfortunately your son will likely need to change his career goals because being able to run is an essential part of being in the police (if he's going to be an patrol officer), and CMT will completely prevent that.

However, moving onto muscle mass, I didn't try Oxandrolone (hard to source a legitimate and therefore safe supply as doctors in the UK are trash), but I tried LGD-4033 and that has done wonders; 6 kgs of muscle in 8 weeks. Just be safe and read about any PED before going down that route, and take blood tests regularly.

For side effects, most PEDs are very safe to use if used sensibly. The people who end up dying tend to be extremely reckless with what they are doing - no blood tests, massive amounts of PEDs, and combining numerous ones together. All in all, the medical world is simply paranoid about PEDs due to the legal status of it and very few doctors have taken an honest look at the research and benefits they can provide.

Thanks so much for all the info. Interestingly my son can run. He’s not the fastest but he can run the required distance in less than the required time. He’s also quite good on beep test etc and played a lot of sport as a teen (tennis, cricket and footy). I also played a lot of sport right up until I was 45 (tennis, touch footy and basketball), but now at 60 I find my legs are failing me.

He’s actually very fit and currently works with heavy machinery as an ag farmer (in Australia). My husband (his dad) is a police officer and is quietly optimistic - except for his lack of regular muscle mass.

He doesn’t want to be bulky - just a bit stronger with a normal looking muscle mass.

Your information is great. I found that study as well. Hoping to find a dr who will prescribe. Cheers and thanks.

JeremyW
JeremyW in reply to Pongo111

It is absolutely NOT true that cmt will prevent you from becoming a police officer.

I know one person with CMT who is with the police, another is in military police, another in the military. He will need to work harder than everyone else but it is possible. He should stay active and join as early as possible. (Before 30)

cmt_exercise
cmt_exercise in reply to JeremyW

If you have CMT, a DEGENERATIVE disease that impacts your balance and limb strength, choosing a profession that requires you to be physically active is incredibly risky. You are simply making a gamble that the disease doesn't progress quickly. No one can yet determine how quickly it'll progress in a patient.

JeremyW
JeremyW in reply to cmt_exercise

Great you define those limits for yourself then. They're both great cops - the career choice is risky regardless. Life is risky and we could all be dead tomorrow. Live your life to the fullest and push your potential to the limit. You could lose it all tomorrow. Don't let CMT define your limits.

cmt_exercise
cmt_exercise in reply to JeremyW

No, your genes are determining those limits 🙄If you want to be in denial about your physical health, feel free, but your time would be better spent in a career that won't become impossible as you grow older.

" Life is risky and we could all be dead tomorrow. "

No. Not really. That's why life expectancy is in the 70's and 80's. Not your 30's and 40's.

CMT will define certain limits. To say otherwise is just denying the impact of the disease, which helps no one, especially yourself.

JeremyW
JeremyW in reply to cmt_exercise

Cool cool. You live your life like that. Hope you all the best with that.

Also you seem incredibly ignorant of the career path of a police officer. There is much more to it than driving around and responding to calls.

cmt_exercise
cmt_exercise in reply to JeremyW

And you enjoy being in denial of your own medical condition. Can't see that going wrong!

I'll admit I don't know the exact career path of an officer, but driving around and having to run are going to be required for entry level roles. Unless you haven't spoken to a doctor about CMT, the medical advice is to avoid a profession which has you on your feet. But what do doctors know, right? 🙄

Do you take it? Is it still working?

Yep, and it works phenomenally. It's not without minor risk, but then again, doing nothing about CMT muscle growth is a major risk.

BiggestGuy
BiggestGuy in reply to Amanita

The weight gain is muscle mass. I have CMT type 1A and I uh, prescribed it to myself in accordance with the study mjbk88 referenced; 20 mg per day, along with 200mg of testosterone per week. 36 days in and my calfs are growing, my forearms are growing, my lifts have all improved dramatically, my coordination has improved, my vertical jump has improved, reaction time, agility, everything has gone up. My CMT was never all that severe, and I regularly played sports as it was, but now I'm actually making massive improvements. It's very much worth taking by any means necessary if you have CMT.

Pongo111
Pongo111 in reply to BiggestGuy

Hey there. Are you still on oxandralone - hows it going?

hi mate

I have cmt and do bodybuilding, crossfit and spinning bike. I do gain muscles... don't have a problem with that. the only muscles that can't increase are the peripherals- hands and feet. you must have to work the muscles that are in function to supply the others that are affected by the desnervation. I feel that if I stop my exercises, my symptoms get worse ..

Hi Alex, that's really incredibly interesting to hear - may I ask which type of CMT you have? Also, in terms of muscle gain, would you consider your gains to be equivalent of someone without the condition, or a hard gainer? I'm currently discussing this issue with my consultant, so any details would be much appreciated!

hello there. I don't know yet what's my cmt type. I'm waiting for genetic tests. my history is a little bit different than the others. I was diagnosed about 3 months ago.. I'm now with 37 yo. .. all my life I was asymptomatic. always do sports everyday and health food .. always.. I try to continue with my exercises, despite my mood depression after the diagnosis. .. but I think I'm doing great.. I think that if you stop , cmt stops you.. maybe I get so later my diagnosis because of my health lifestyle . my neurologist saysthat I have type 1a.. I pray for that, because its the most common and that's almost be treatable (see plx3003 drug). don't give up.. do your exercises.. if you can't build muscles, you must try harder and better.. ok? well.. that's what I think. sorry my bad English.. I'm from Brazil.. I'm also a Doctor - psychiatry. bye bro

I've never given up on exercise, and frankly, it's very patronising to simply suggest "you must try harder and better.. ok". I'm not a fool and can see that something isn't right - when I have the perfect clean diet and have tried multiple different exercise routines for years with absolutely no gains at all, clearly that is indicative of something problematic, even more so when you consider that I am not the only one with this issue, with the common link being CMT.

Djbomer
Djbomer in reply to cmt_exercise

I agree. I’ve been a painter and decorator for 49 years and struggled with pain and discomfort. Now I’ve finished work I find even simple tasks have got harder. So I’m sure you must keep moving and exercise as much as possible or else your muscles will disappear and that isn’t any good for anybody.

djBomer

cmt_exercise
cmt_exercise in reply to Djbomer

But if CMT prevents muscle growth, what on earth is the point in exercising, as exercise should help increase muscle mass? Exercise would be wholly futile.

Djbomer
Djbomer in reply to cmt_exercise

That sounds very negative. You must keep moving or you will end up bedridden because you’re leg muscles won’t be strong enough to hold your body wait

cmt_exercise
cmt_exercise in reply to Djbomer

Being negative or positive isn't my point; my point is to find the facts around CMT. Being in denial about a potential symptom of CMT helps no one, especially yourself. I'm not talking about lying in bed and giving up, however, if spending 7 days a week at the gym isn't going to reap any benefits, then that must be accounted for, and acted upon, no?

Djbomer
Djbomer in reply to cmt_exercise

I agree. That is why we subscribe to the research team with hope they will come up with an answer. But in the mean time keep moving to the best of your ability.

Ps I’ve never been to a gym. I would find it to intimidating with my body

cmt_exercise
cmt_exercise in reply to Djbomer

From what I've noticed, the research teams are idiots. A lot of work done is useless, aimed at improving one's academic stance than making life easier for people with CMT. And some of what has been done is so bad, I'm amazed it passed peer-review. I've been told for the last 15 years that a solution is just around the corner, but here we are, no closer to a cure. The only thing I found that helped was my own research into PEDs.

Honestly, a gym and strength training, in combination with PEDs, are perfect for CMT. Start on small weights and see how it goes - old, young, slim, fat, muscular, annorexic; there are all types at the gym, and no one will take notice of anyone else as they're there for generally the same reason.

This is also very true in my recent experimentation.

It's almost definitely 1a

I've been going to physical therapy the last couple of months. I "graduated" this past week so now it is up to me to keep up the exercises I was taught. Walking I was told was one of the best things. Stretching & getting in the pool. The resistance of the water is most helpful. I bought on Amazon a peddler. I can sit on the side of the bed & pedal or place on the table & pedal with my arms. There are even exercises to do lying down to improve your body core. I have been extremely weak because I basically stayed in bed for a couple of years before I finally was diagnosed with CMT. I am 69 but I am not giving up on life. I am in a lot of pain & have sleep apnea & now sleep with ventilator. I am just thankful for wonderful doctors and modern inventions.

I'll be honest in saying that I think most of the doctors/consultants have been extremely lazy and incompetent in treating the symptoms of CMT, due to a fixation on curing CMT (v. hard), instead of minimising the symptoms and side-effects. If muscle mass cannot be grown, then exercise is unfortunately entirely futile.

no way bro.. exercises are everything.. muscles grow are just a consequence..

No "bro". If your strength doesn't change, then what is the point in exercise? There's no point in exercise if the goal is to increase strength, which is something CMT may prevent.

relax bro .. maybe you'll to focus on results.. it's not the finished , but is the way man.. if you enjoy to go to the gym and do exercises, ok... if don't simple don't go..

on the last 2 months I gain 6 kg of lean mass. fire it's too much, because of surfing..

to heavy... I try to focus on diet and loose fat mass, now are 11%.. my go is 8 or 9... relax man..

you must go slowly

peace bro

Your point makes no sense - building strength is the recommended advice for CMT patients, yet may be impossible.

Go slowly? Don't be so patronising "bro". I've been trying for the last decade without any results, which is something almost all CMT sufferers experience. Clearly whoever said you had CMT is incompetent as there is nothing to suggest you do - you have no symptoms at all, and your progress in the gym is further evidence of this.

Bro take anavar/oxandrolone. It works.

I'm not meaning to judge but perhaps you are going to the wrong doctor. My neurologist ordered AFOs, physical therapy, and a pulmonary specialist. And of course I follow up with her. Of course there is no cure but she has my health & interests as a priority. My dermatologist and dentist are even aware of CMT. My neurologist has volunteered to test my sister and her children since I have no childten. I couldn't ask for better care.

It's not that the consultant doesn't care, and the hospital is arguably the best in the country (UK) for neurological conditions, especially CMT. The issue I think is that neurologists dealing with CMT have ignored something right in front of their eyes the entire time - that any sort of meaningful muscle growth is not possible. I'm not referring to basic physio of "lift your leg 10 times, 3 sets per day", but full, exhaustive weight training with a calorie controlled diet. If meaningful muscle growth is not possible, then the advice touted by CMT experts to "maintain regular exercise" has been completely pointless.

Personally, I think the issue is that most people, including the doctors themselves, aren't aware of what to expect from exercise (2-3lbs a month of muscle), and therefore this problem has gone unnoticed.

Hidden
Hidden

If you look up on the internet it is there about cmt and weather or not if you can build muscle, it is known that we can’t, I copied and pasted this from one site. “STRENGTH TRAINING. You cannot build up muscles that are heavily affected by CMT because the nerve-muscle connection is not working well there. Still, you can strengthen those muscles that are not affected by CMT. ... The goal is to use those muscles to help compensate for CMT-related weakness.” And that is why we are told to exercise

cmt_exercise
cmt_exercise in reply to Hidden

Hi Tonia, the issue I and other CMT patients are finding is that it seems to be that ALL muscles are affected by a lack of growth. A healthy person can expect to gain 2-3lbs of muscle a month with a 4 times a week strength-training routine. I and other CMT patients seem to have a total of 0 lbs per month, every month, regardless of muscle set, diet, training routine etc.

Hidden
Hidden in reply to cmt_exercise

I as well have the same issues, but I believe if we stop all together doing exercise, that are muscle will waste much faster then they already are. I have never in my life built any muscle on my entire body. But I have noticed that when I stop exercising the muscles that I have waste much faster. For myself I will continue to exercise to slow down the process that is happening and no matter what, will continue to happen to my body.

cmt_exercise
cmt_exercise in reply to Hidden

Actually, there's evidence pointing to safe drugs that could both stop muscle atrophy and also help gain muscle as well. It does seem to me that doctors have been exceptionally ignorant to this as these drugs aren't new - most were developed in the 60's and 70's.

oxandrolone bro -for muscles

cannabis - for your anxyet

What anxiety? And you can't just take Anavar. What are you going to do about shutdown? Aromatisation? PCT? How long is it required for? Doctors should be answering these questions, but remain willfully ignorant of the benefits of Anavar because they think all AAS are evil.

I believe that everything is not medicine, the side effects are not only while you take them, after taking them also has its consequences, the effort and the desire are more profitable especially for us, the moderate exercise is equivalent to the extreme effort of a person (healthy)

Definitely not doing it makes us harder next day.

What? That literally makes no grammatical sense.

there is a good right up and results from a clinical study of "ANAVAR and CMT" Google it. very good results.

I haven't tried it yet and am looking at something else right now. I'm 53 now and weigh 182# at 50 I was 150#.

good diet nutrients and weight training has helped me to gain 30# of muscle in 3 years.

is there a way to post pictures on here?

cmt_exercise
cmt_exercise in reply to deengo

Hi deengo, just a few questions:

What kind of CMT have you been diagnosed with?

What is the severity of it?

How is your sleep?

I'm looking to see if there's a pattern between those with CMT who can gain muscle and those who can't. My diet and training have been perfect for years with zero gains, therefore I'm trying to assess why this is the case.

deengo
deengo in reply to cmt_exercise

I've actually got 2 nerve disease both confirmed through DNA testing. I have HNPP and adrenomyeloneuropathy, that's the bad one.

I cant walk with out a cane and use a wheelchair for my 3 hour work day.

I don't sleep well. I have apnea and have tried a c-pap but slept worse I know use a custom mouth piece to sleep and dont wake up gasping for air anymore. so that say helped. I go to the gym 4-5 days a week and only work 1 muscle group HARD and HEAVY per day. that has seemed to help me out a lot

cmt_exercise
cmt_exercise in reply to deengo

So you don't have CMT? I think the issue with muscle growth is CMT specific as everyone with CMT seems to have the same problem - no matter how good your training and diet is, even with DOMs, there is no muscle growth or change in body composition, which clearly isn't normal.

It is interesting how so many neurological diseases seem to result in sleep apnea.

deengo
deengo in reply to cmt_exercise

that's not true. there a Facebook page called

CMT athletes

there is a lot of good information and active people there that have CMT but as we all know everyone is effected differently

cmt_exercise
cmt_exercise in reply to deengo

Just because there's a facebook page doesn't mean it's not true...

And no, a symptom of this magnitude to do with muscle growth, a very complex mechanism, will almost certainly not be selective.

deengo
deengo in reply to cmt_exercise

no, but there are people on that fb page with real life exoeriences with real life true results

cmt_exercise
cmt_exercise in reply to deengo

So far the only person who has significant results on that page is a guy who clearly uses anabolic steroids, but doesn't have the balls to admit he does...

Interesting read. I'm new to all this. 36 year old male - always enjoyed sport but realised natural limitations before diagnosis in mid 20s (1A). I'm probably at my fittest since early teens & have changed body composition through diet, non-impact aerobic (cycling/swimming/pilates). I have begun some wight training and have noticed muscle gain in chest/biceps/thighs & upper calves. I am however unable to build muscle in ankle/lower leg/wrist. I completely understand frustration at lack of development in treatment/drugs to improve muscle gain in these areas. All cases are different but excercise/flexibility work is still vital even if no muscle gain happening. This might be naive but I know plenty with no diagnosis who toil in the gym with no muscle gain.

What's your body fat% and what sort of improvements in weight lifting are you seeing (kg)?

Leave it with me - I need to get proper stats for you re: % body-fat etc. To give you basic idea in meantime: Swimming: swimming 1km in a session -> up from 500m. Cycling: 20 km per day at average speed of 25-30 km/hour. Basic weight training: Increased from 10kg dumbbell reps to comfortable 12.5kg dumbbells with incline. Looking to increase again to 15kg. Nothing special but I notice an increase in strength. Also seen improvements in core stability and strength with training & Pilates type exercises. It is obvious you have researched all this way more than me - please keep up the fight. I can only speak from my own experience which seems to be consistent with the variation in people's symptoms and how they are affected. I am also not naive enough to think that my condition will not deteriorate. However I'm willing to keep taking tips and looking for improvements and appreciate the research & questioning people like you persist with.

I'd be interested in hearing how you get along. For strength, I plateaued out at 15kg dumbells, which is pretty appalling. Look at increasing forearm strength as that seems to be a major limiting factor. I've been on Ostarine for the last 8 weeks and my forearms have gained significant mass which is helping with all upper body exercises.

I was the weakest in the school. Can't run, frequently tripped off, whole body was thin. I started weight training in mid twenties and get enough muscle to my whole body except the peripheral ones. So yes, muscle development is possible in the unaffected body parts. Once my daughter was confirmed 1A, I was also diagnosed the same being the culprit transferring successfully my genetic diseases on to her. I wish I die. None of my family sides, father or mother, have the CMT. They were fully healthy, their peripheral parts were strong and muscular too . Non of my siblings have any issues either.

Hi, Abul,

Please, please don't feel guilty. You clearly didn't know about your CMT when your daughter was conceived, and as you were the first in your family to have it, there was nothing to suggest there could be a faulty gene at work.

I certainly don't blame my mother for passing it on to me. I'm sure she didn't know she had it (though it is obvious to me now with hindsight that she did) and she died when I was in my 20's long before I knew the reason for my tripping and poor balance - and for my being such rubbish at - and detesting - all sport at school.

You need to try to adopt a pragmatic approach: don't beat yourself up; accept the situation, and do the very best you can for your daughter and yourself . You cannot do more.

CMT aka Peroneal Muscular Atrophy & Hereditarily Motor & Sensory Neuropathy is a muscle wasting disease, my age is 76 years old and first diagnosed 40 years ago and as I have got older my muscles waist does worsen and I think this is inevitable

Yep it will be due to declining rates of testosterone. With CMT, it would be sensible to be put on TRT later on in life to prevent worsening of muscle atrophy. If you have a good doctor and explain this to them, they may be able to help you out.

It is true. All my muscles are affected and the older you get the worse it becomes

DortchRules
DortchRules in reply to Ilsesmi

How did you fight with this? It is important for people with CMT to maintain movement, muscle strength, and flexibility, but it is impossible to build up muscles that have already atrophied. Moreover, I don't think that the steroids will help you to grow the muscles but I think that is not good to use it because it can affect your health. I took some steroids usa from steroids-usa.org because I wanted to grow my muscles ( I took the steroids according to my trainer's program) and I bought the high-quality steroids to be sure that it didn't affect me.

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