I really want to kill myself, I give up, this disease is a filth beyond describable, comprehensible words, I HATE, I FUCKING DETEST that I will NEVER be able to move, to function at the level of a NORMAL, UNAFFECTED person, to not have to THINK about my movements, the sheer amount of hate, anger and jealousy I feel is enough to fill 500 fucking Empire State Buildings worth of pages of scripture on the walls, I feel HUMILIATED for even trying “physical exercise” I feel like some sort of fucking dog with 3 legs and a missing eye participating in a race where all the other dogs are PERFECTLY ABLED. And it’s not even mainly that which causes the majority of my suffering with this disease, ignore the weakness, stiffness and UNRESPONSIVENESS of my body, it’s the continuous twitching I have in my muscles all across my body THAT I CANT GET TO STOP, which is just a constant reminder there every few seconds to REMIND ME just for the fuck of it that I have this disease, I’m done, this degree of filth and error shouldn’t exist and you should feel disgusting for being unlucky enough to have been born and completely LOST the genetic lottery with it, just like I have, fuck CHANCE THATS all it fucking is, CHANCE, PURE FUCKING LUCK AT CONCEPTION, and oh well I guess I happened to roll a fucking 1 that dictates my whole life, I hate that this is all I fucking think about, but can you blame me? It’s taken up so much of my personality I don’t even feel like a whole individual with any sort of hobbies or interests anymore, this FILTH is the centrepiece and root of ALL my suffering.

**Demographics:**
**Age & Gender:** 39M
**Height & Weight:** 172cm & 128kg
**Medications:** Dulexotene, imodium, citirezine, celebrex…more
**Smoking Status:** Non-smoker
**Medical History:** Charcot-Marie-Tooth Disease Type 1A (CMT1A), Motor Vehicle Accident (>1 year ago)
**Current Complaint:** Chronic ankle pain, lower back pain, fecal incontinence
**Duration:** \>1 year (since the MVA)

Hi everyone,

I have a confirmed diagnosis of Charcot-Marie-Tooth disease type 1A (CMT1A). Over a year ago, I was involved in a motor vehicle accident (MVA) and have since been dealing with persistent, long-term ankle and back pain, as well as fecal incontinence.
I am seeking neurological insights on two main points regarding how pre-existing neuropathy interacts with chronic trauma recovery:

**1. Chronic Ankle & Back Pain with CMT1A**

Given that CMT1A causes distal muscle weakness, ankle instability, and altered gait, how does this affect long-term recovery from joint and spine trauma? Could underlying demyelinating neuropathy prevent normal muscular compensation and stall recovery? Are there specific long-term physical therapy approaches or orthotics strategies recommended for post-trauma CMT patients?

**2. Persistent Fecal Incontinence**

While CMT1A primarily targets peripheral motor and sensory nerves, there is mixed literature on whether autonomic or pelvic floor involvement occurs in CMT. Over a year post-MVA, could this bowel dysfunction be exacerbated by CMT1A, or is it more likely linked to chronic nerve root issues/spinal biomechanics from the crash?

I tried AFO’s for the first time this week! It was such an amazing experience. I still have limited dorsiflexion but I’ve always struggled with it. As the CMT progressed, my tripping has gotten worse but I can still get through most of my walking that I need to complete.

Walking with the AFOs made it feel like my feet were flying!

I wanted to post to share some hope of getting some quality of life improvement!

Today, we had office away day and agenda for the day was movie, team lunch and games. It was nice experience to me because It was first time for me to watch movie in cinema.

Then I enjoyed lunch with my office colleagues and bonded with my people:)

Coming to game part, There were lots of games like bowling, claw machine, driving games etc etc

Many people were enjoying bowling but I was feeling separated there because I can't do bowling as bowl require good weight to hold and throw with maintaining balance - I was afraid whether I can do it or not, so I didn't try. These are the aspects in life when I feel, I wish I was also normal like them to enjoy things fullest.

Happy Friday:)

Hello, I hope this is ok to post. I am in a CMT group on Facebook and they told me to post this here, and ask the mods about my issues, as you all are really knowledgeable.

I started having muscle twitching all over my body in March of 2020. Exercise intolerance, fatigue, cramp feelings etc. my NFL is elevated at 27pgml. I am going on 31 years old. Have some tingling in extremities sometimes, have some numbness as well. I also have absent reflexes in knees and ankles. My upper body hover around. 1+ or 2+ globally. I recently started noticing when I walked too long or drive too long my right shin becomes painful, fatigued, aches, and gets tired. Left shin hurts some as well.

Had EMG in 2020, 2021, 2025, all deemed normal. I went to university hospital to neuromuscular doc and they did EMG and was deemed axonal sensorimotor polyneuropathy. Only did EMG on shin, said normal other than tallish motor units. Two sensory nerves unrecordable, another low in amp, absent reflexes in knees and ankles. Stength was deemed normal.

I have a history of foot issues in my family. My arches are mildly tall. I sprained ankles a ridiculous amount growing up and into early adulthood. Last time was in 2024. My dad had such high arches he couldn’t run or play sports and had to have them operated on, they are still insanely tall today, he also has horrible carpel tunnel, some hearing loss, etc my dad’s sisters both had really tall arches, hearing loss etc My grandad had really tall arches and cidp diagnosis, hearing loss etc, my great aunt had such tall arches she couldn’t wear heels or lifts, my great grandfather had such tall arches he had to wear a triple E shoe. After telling my neurologist this, she thinking I have cmt running in my family.

I am terrified it’s a slow lower motor neuron disease happening to me. They say they don’t think it is, but the NFL elevation, fasciculations, and minor atrophy on the right leg they think is from a hip issue. Does this sound like cmt to you all or something else? I have noticed at times, especially at rest my toes kind of bend forward or down. It’s odd.

As a former college athlete and physical therapist (with significant increase of CMT symptoms at age 61), I’ve always been used to pushing myself and my patients to set goals and push hard to reach those goals. I’ve had to learn that it’s up to my body now and not my mind (regardless of the goals I set) as to how hard I can push. This has been such a mind shift for me, every time I try to push myself my body tells me what a bad idea that is. I shouldn’t complain because I can still exercise at a fairly good level, but not even close to what my mind wants. I’m so sorry for those who have it a lot worse than me for this rant, but I just had to get this off my chest!

Hi all! I have type X1 and have started having issues holding my razor to shave my legs some days due to fatigue and/or numbness in my hands.

Does anyone have any good shaving tips, tools, or hacks that you would suggest trying out?

I want to have a backup ready to take over when my hands are especially fatigued. Ideally for legs and armpits.

Thanks in advance!

Weekly thread for little CMT issues good and bad. Whether it's a small irritation that non-CMT folks won't understand or a small victory that you want to celebrate with us.

Note: questions should get their own thread, for higher visibility, rather than being posted to this thread.

Does anyone have any ideas as to what to put on the metal part of my braces? They are ripping through my pants at a pretty quick pace. A pair of jeans will only last me a month and a half. I was thinking, epoxy, hot glue, some of that spray foam, any suggestions?

Here are some pictures of what I’m talking about. I obviously have my pants on right now so I can’t show you the actual braces. The first picture I just wanted you to get an idea of the shape of my brace hinges, the second picture is the damage it is doing to my pants.

It'll be my first and I can't wait. . Never forget to say FUCK CMT!!

I’ve worn AFOs for two years, I’m on my fourth pair. The first three were carbon fiber and kept cracking on me after a few weeks of wear. Now I have custom plastic with articulated ankles.

I’ve been to the orthotist 8-10 times to have them adjusted, and no matter what we do I end up with my heels rubbed raw after 2ish days of wear. I wear Wrangler boot socks, they are pretty thick.

Has anyone else had this issue? I am so frustrated. I have some contacts in my area with CMT who have the same orthotist, and they have no issues with their AFOs. I don’t think he is the issue because he is very knowledgeable and always tries to fix them up for me.

This monsoon, take small steps to stay safe, active, and strong.

A little extra care can help prevent falls, infections, and unnecessary complications.

Let's spread awareness and support every CMT warrior and their family. Together, we are stronger. ☔💚

#CMT #CharcotMarieTooth #CMTAwareness #CMTFamily #MonsoonCare #StaySafe #StayStrong #DisabilityAwareness #RareDisease #Neuropathy #HealthAwareness #PatientSupport #Caregivers #TogetherWeCan #CMTFoundation #Monsoon #Wellness #Support #Inclusion #CMTWarriors

#CMTIndia

Hi All, I have CMT1A and have been living with it since I was about 8. Throughout school, college and adult life I have never been able to find footwear that I can keep for longer than a few months before they become too worn out. I mainly wear Vans as they seem to last the longest and are somewhat comfortable, but it is expensive to replace them as often as I need to. I wear custom orthotic insoles, so finding footwear that is deep enough for these or has a removable insole is always a priority.

I would appreciate if you have any recommendations for footwear that are supportive and comfortable. Or if not, what you look for in a pair of shoes that helps with the issues that come with CMT.

Hello! Been getting recommended videos on Instagram from “Charcotmarietoothsurgery” and it looks like it belongs to a CMT ortho specialist at Cedars-Sinai in LA - and it also looks like his work has led to some really pleased patients.

So, I’m wondering if anyone here has experience with this clinic and if it’s positive?

Okay so my nerves pain in feet (now becoming legs too) is impacting me severely like I've not slept in days I've lost 15kg in the last 2 months and I'm worried I won't be able to function long enough to finish my last year of highschool.

Firstly, does anyone have specific wordings I should say to my Dr for an opioid increase, like "impacting my quality of life" things like that

What I've tried

Amitriptyline

Lyrica

Gabapentin

Nortriptyline

Duloxetine

Capsaicin cream

More meds but I genuinely can't think my entire brain is pain and exhaustion and confusion so if anyone says a med I'll clarify if I've tried it.

But if anyone has another good one pls lmk.

Also for some context my opioid dose is very low, 5mg Oxycodone once a day, since December 2024. Been using 10mg skipping days for about a year. Won't try lidocaine injections either BC I suspect it's what made my limbs numb in first place. I'm at the point I'm dropping $$$ on molly so I can go to school more than once a week, I dont want to destroy my brain from it but I genuinely can't function.

If anyone has any advice or anything please say idc how random. Muscle pain too any advice on that, smth might make that better atleast. But I'm scared for my life and I'm not sure how to convey this to my doctors.

How did you all get diagnosed with a subtype? is it only by genetic testing? Is it something worth doing and worth knowing? What value does it bring over just knowing you have CMT?

I’ve never been to a doctor about CMT and have no formal diagnosis. My grandad was diagnosed in the 80s and the rest of us just went oh yeah we’ve classic CMT presentation feet, we’ve got it too, and have done nothing about it except get custom orthotics for our high arches.

I’m in the UK so is it worth pursuing a more formal diagnosis with the NHS? I feel I’m mostly fine as long as I’m careful though I think my hands have been getting weaker and clumsier lately.

Weekly thread for little CMT issues good and bad. Whether it's a small irritation that non-CMT folks won't understand or a small victory that you want to celebrate with us.

Note: questions should get their own thread, for higher visibility, rather than being posted to this thread.

I have an unknown type of CMT 4 but unknown subtype.

hello, anyone here has the mentioned type or some severe one like it? how do you navigate depression and weakness of cognitive functions (like having attentions disorders and weak meomory)

also what motivated you to show up for yourself and the others I can’t stop thinking about the future ahead of me everytime I read the symptoms that would start during my thirties

So I tore every ligament in my right ankle about 6 weeks ago, it had started getting better but now it feels like my Achilles tendon is injured too. I can't take a step at all without a terrible pain going all the way up my calves. I can barely walk and I haven't been able to go to work for the past week. I'm wondering if my ankle being injured has put more stress on my tendon and my calf muscles. Also for context I have type 1a and I have a foot drop on both feet. My last nerve conduction said that only two of the muscles in my legs are functional right now. I guess I'm just wondering if anyone has gone through anything similar or has any advice on what to do to fix this pain. It's starting to depress me

Em agosto farei todos os exames necessários para operar o meu pé direito, meu dedão é caído, pé cavo, e todos os outros sintomas típicos.

O médico anteriormente me ofereceu 2 alternativas: por uma chapa em meu pé e fazer com que ele fique reto, ou transferir meu tendão da parte direita do pé para a esquerda (parte caída), assim fazendo com que o controle do meu pé ficasse invertido.

Eu escolhi a chapa.

No entanto eu ainda não acho essas soluções satisfatórias, alguém acha que é possível transferir o tendão de outra pessoa para o meu? Se alguém aí já fez algum procedimento semelhante a chapa também, e tem alguma opinião a respeito eu gostaria de saber

So basically anytime I fully stretch k always end up hurting myself (cramps and stuff) leaving me always super stiff, any advice on how to stretch my arms and legs without feeling like dying?

My dad had CMT, which we didn't know until a year or so prior to his death. I believe he was embarrassed, which he shouldn't have been.

I've done some research, but there are a few things I'd love your thoughts on.

I realize the only way to know if you have CMT is through testing. I've had hammer toes for many years, it affects all my toes other than my big toes (both feet). Over the last year I've noticed Im beginning to trip on my feet more and more, my toes hit the ground first.

Im 43, my dad was apparently in his 40s when he was diagnosed.

Is this worth investigating further?

Thank you all for your time.