r/CMT

Hi all!

I am a 25M awaiting my Neurologist appointment next month to test for CMT. For years I was told by podiatrists that my issues were plantar fasciitis, but at the beginning of 2026 I developed new issues and saw a new podiatrist who believed I may have CMT. I have very high arches, weak, crackly ankles, and my left-side calf is noticeably weaker/smaller than my right. At the time of my appointment, my feet and legs bilaterally were burning so bad that I couldn't even sleep. The burning would spread from the soles of my feet up to my knees, and it has since subsided into something more sparse and manageable, but it still flares up from time to time. I have always had an awkward gait, but never thought too much of it until I learned of CMT. I also may have slight hammertoes, but I am not an expert enough to tell. My hands and arms seem to be fine, but I have very slight nerve pain or tingling on rare occasion.

These all appear to be signs of CMT, but as far as I know I'd be the first one in my family to have it (or at least display obvious symptoms). As a touring drummer, the thought of living with a degenerative disease is quite scary - it hasn't stopped me from doing anything yet, but I am living and working through the pain. I have found one combo of my custom insoles/shoes that seems to keep things manageable, but switching to anything else brings symptoms right back, almost immediately.

I had two specific questions that I wanted to see if anybody could relate to. One is does anyone here get pain in their heels/achilles? When I am on my feet for long periods of time, I develop dull pain in my heels, which can then lead to nerve pain. I don't know if this is just a combo of PF and CMT, or if anyone relates to this? I've been working very hard to strengthen my calves, legs, etc. and I believe it is making a small difference.

A second question: I have always felt that no matter how much I stretch (and I am pretty flexible) my muscles tighten back up very quickly, especially my calves, hamstrings, hips. Does anyone else also notice this?

Regardless if I have CMT or not, reading through this subreddit has been very helpful and I appreciate everyone's insight dearly <3

I'm trying to be more grateful for this life...So now I just think it makes the whole environment an immersive experience l o l ... no matter where I am , i'm bumping into something or at least hyper focused on my surroundings, and it's good and humbling to look down at the ground we walk on. I don't know... I love all of you

Hey yall so I’ve had this job as a food microbiologist going on 4 years.. my hands have declined so so much I’ve moved departments 2 times in hopes it will be easier on my hands.so many fine motor skills very repetitive. It’s just getting to a point where my hands feel very weak and hurt. It’s really affecting my mental it seems like I can’t do anything with my hands I just hurt and feel weak. It’s hard to enjoy my weekends my hands just get tired and sore from anything. I just bought a house last year I feel lost stuck stressed out I don’t know what to do anymore. I don’t know what job will accommodate my hands and still make around 25 an hour.. any advice yall much appreciated!!

Those who sit for prolonged periods of time at the desk, what chair has been the most comfortable? I’m currently looking at either Herman miller Aeron or Steelcase leap. Open for more suggestions.

It’s as close to being actual pharmaceutical grade as possible without actually coming from a doctor. It’s the exact same stuff as the very top level bodybuilders use. This won’t be my first time doing it. I won’t discuss my results from when I did two cycles years ago because I don’t want to seem like I’m advocating for it because there’s no way to describe the effects it had on me without sounding like a series of glowing reviews. There are absolutely dangerous issues it can cause. I am aware of them, and am willing to take the risk. I asked several doctors who would be able to prescribe test to me to “please help”, and that “I preferred the help they could provide, but would be on this stuff regardless of their decision.” They all declined me, but when a perfectly abled actor needs to put on 30lb of muscle in 6 months to play Batman they have no shortage of doctors to give them this stuff, but me with my body withering away “I don’t need to take that risk.” That’s BS I’m trying to squeeze more years out of my life.

I have CMT1X and have been out of high-school for one year, I'm relativity capable with only minor tremors and some drop foot. I stay relatively active and can lift 50+ pounds pretty regularly, stand on my feet all day, and walk most of the day. The school seems to have never heard of CMT and is making me go through a bunch of extra documents and doctors visits on top of what I already had to do as a prerequisite. It just feels like they don't want me to come despite having more sedentary programs like IT and design and engineering.

honestly just looking for some advice or anyone who has dealt with something similar. Ive been at this for more than a year and am feeling discouraged, doing the same thing every day and just waiting for papers to process and doctors appointments all the time.

Hi, I’m a 25-year-old man with CMT. I’d like to ask about your experience with strength training at the gym. I go swimming about three times a week, using both free-style and assisted methods (kickboard, floatation device, fins, paddles, etc.), and I swim about 1,300 meters per hour.

I’ve been thinking about adding strength training, but I’m not sure how to structure it or whether it’s recommended for people with neuropathy. My goal isn’t to build muscle, but rather to maintain my health and possibly see some improvement.

What are your experiences?

Thanks!

In Dec I broke my left calf bone right at the ankle and dislocated the inside at the same time. I had surgery in Feb to repair it. I was on basically complete Bed rest for 6 weeks. Then I started Physical Therapy and have done that for 6 weeks and there wasn't a lot of big swelling until this week. Wednesday morning I woke up to my foot being huge and I went to PT and she made note and I have been keeping it up as much as possible, I went back to PT yesterday afternoon and my foot was 2x as swollen as it was Wed.

But that doesn't seem to be doing much. I take Naproxen 2x daily and Magnesium already. Is there anything else I can do? It is time for me to switch to a Lace up Ankle Brace from the Cam Boot but unfortunately yesterday even the boot was hard to put on. I do several foot exercises and have been icing it for 15 minutes every 2 hours like I was told but don't seem to be helping. 😭😭😭😭