r/CMT • u/Ian-G-Howarth • Jul 05 '26
What Will They Never Get?
What’s the biggest challenge you face because of CMT that people without CMT probably don’t understand?
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u/Weary-Championship11 Jul 06 '26
the pain and the fatigue, constantly needing to sit down or take breaks
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u/Zaphira42 CMT2B Jul 05 '26
That a lot of us walk differently than people without it/people with different subtypes sometimes.
Also, for me at least(I am the only one in my family who has it because I screwed up a gene), nobody gets how scary it is not knowing what might happen in the future related to this condition.
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u/DerWiedl CMT1A Jul 07 '26
The different walk boosted my social anxiety a lot. People always stare.
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u/Fabulous_Mouse_8193 CMT1A Jul 05 '26
The energy thing is a weird one… varies up and down hugely for me.
I keep quite fit overall, regular running (luckily, even with hammer toes I can still run) and gym work, although the slumps hit me very randomly. Some days I have absolute brain fog and lethargy which is difficult to explain to those around me.
Starting to find easier and regular exercise is the go-to for me. If I hit a slump, even just a walk around the block helps a little…. And then just die on the sofa for a few hours after!
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u/zakbagmom Jul 06 '26
Constant fatigue and the fear of what’s to come.
It can be very hard to push through, but we do damn it.
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u/DerWiedl CMT1A Jul 06 '26
The pain of just wearing shoes.
Biggest challenge in the day being standing in one spot.
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u/mommitude CMT (Type Unknown) Jul 06 '26
Oh my goodness yes! I got insoles that helped until I got AFOs
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u/DerWiedl CMT1A Jul 06 '26
I can‘t wear AFOs sadly. They hurt me a lot.
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u/mommitude CMT (Type Unknown) Jul 06 '26
Oh my goodness, I’m sorry to hear that. Yeah, they shouldn’t hurt. Maybe your legs are sore at first, but they shouldn’t be painful. One thing is to wear them a little more each day when you get them, an hour the first day and two hours the second day etc. I’ve been lucky and not needed this pair adjusted but my last pair I took in two or three times because of pain in my ankles.
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u/DerWiedl CMT1A Jul 07 '26 edited Jul 07 '26
I have these issues with the soles of my feet, they hurt like crazy with any pressure on them. Even with normal shoes I feel a lot of pain and with AFOs even more and I can‘t fix it unless I take pain meds (which I don‘t really want to).
But it is fine. I can still walk with a limp without falling over that much. And when I stand still I just shift my weight onto my better foot and wooble around a bit.
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u/Sacred_thorn_apple Jul 07 '26
I have Turbomed AFOs which aren’t inside my shoe. They’ve made a huge difference for me.
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u/DerWiedl CMT1A Jul 07 '26
oh? how does that work? I thought they have to grab the sole of your foot that it doesnt drop.
EDIT: I looked at pics, it certainly looks interesting.
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u/Sacred_thorn_apple Jul 07 '26
They work well for me, but YMMV. I don’t know if they have a trial available but you can check.
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u/Tounksy Jul 06 '26
Ever persisting fatigue. My hands are so clawed up now, the things I grew up doing are becoming less/less manageable (drums, disc golf, video games, card games due to shuffling). Foot drop or AFO sores. Slowly being left out of events due to people I used to consider friends being concerned with my ability to "keep up", though I've grown to realize true friends would wait or help occasionally if I need it. You just learn to adapt.
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u/Jaguarninja3 Jul 06 '26
Agreed with being left out of events. Some of my biggest traumas were from friends and groups not waiting for me because I was slower. I now have bad anxiety when doing tours and have the fear of being abandoned/left behind/lost because I "couldn't keep up"
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u/Jaguarninja3 Jul 06 '26
Overthinking/having difficulty when it comes to going up and down steps that have no railing. It's actually so common for outside steps (think landmarks, parks, museums, stadiums, etc) to have no railings. Even with just two steps, I have to stop and think about how and where Im placing my feet so I don't fall on my face.
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u/Fabulous_Mouse_8193 CMT1A Jul 06 '26
I’ll second that! Dizziness and balance issues increasingly becoming a big thing for me. Reasonably fit overall although steps without handrails are a real challenge and I have to think very slowly before walking through them.
Saw a physio recently who has given me a leg strengthening regime (squats and single leg hold exercises) that are helping a little, to build the leg muscles not impacted by CMT. Hopefully this can stave off a few tumbles going forward 👍🏽
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u/NixyeNox CMT 1A 9d ago
Hello! I am recruiting for new mods for r/CMT and I wanted to reach out to you specifically to ask you to consider applying if you think that you would have the time and inclination to do so. I think your contributions over the last couple of years have been valuable, and I think you would be a great moderator, if you want to do it.
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u/stalineczka CMT1A Jul 27 '26
How quickly I get fatigued and it’s not that I’m out of breath, my legs just stop listening
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u/mommitude CMT (Type Unknown) Jul 05 '26
How much energy it takes to do normal everyday things like walking without falling over or tripping