Awaiting Diagnosis - Seeking Community and Answers
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