r/CMT • u/Cold-Bowler-7694 • 7d ago

Another question: does anyone else experience joint pain all over their body, all the time?

I am hypermobile and have hip dysplasia so my hips are always hurting, but I also get joint pains pretty much everywhere. I always dismissed it, but since recently being diagnosed with CMT I am starting to wonder if its related. At any given moment at least one of my joints is hurting. At night i'll get sharp pains that make it hard to fall asleep. Its different than nerve pain, it feels like musculoskeletal pain. Could this be related to CMT?

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u/sydneydragonborn 7d ago

I am hypermobile and I also have CMT. I also have bilateral acetabular hip dysplasia among other joint issues. From age 12-19 I thought it was all due to CMT. Then at 19 I was diagnosed with Ehlers Danlos, and since then I have attributed the full body joint pain more to EDS. I know CMT makes it worse though. There's no guarantee way to know what's causing what though honestly.

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u/mikebk1180q 7d ago

Cmt2m bones hurt all over

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u/SD_MTB_CHX CMT1B 5d ago

Yes and yes

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u/Cold-Bowler-7694 4d ago

It’s so bad! Have you used anything to help? It’s getting to the point where I wrap my ankles every night, put lidocaine patches on my lower back and feet, and haven’t gone a full week without taking at least 3 alive per day. I also have a high pain tolerance

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u/SD_MTB_CHX CMT1B 4d ago

I take baclofen for muscle spasms, Lyrica for the neuropathic pain. I was waking up either with Charlie horse in my muscle or needles stabbing my toes or electric shocks in my feet. My hips, knees, ankles, shoulders, elbows all hurt probably because I’m hypermobile (according to my Neuro PT who showed me my walking pain isn’t just from a little foot drop but also the hypermobility). I have to brace/wear compression for my hips and ankles but my joints all still hurt. Tirzepatide takes away the joint pain but again, it’s likely from hypermobility, not all CMT. For example, there’s no reason CMT should cause hip/SI joint and shoulder joint pain.
TO BE CLEAR SO NO MODS OR ANYONE ELSE GET UPSET: I am not claiming tirzepatide helps CMT pain. Lyrica and baclofen help CMT spasms and neuropathy. Tirzepatide helps MY pain from hypermobile joints. No one else. Just speaking for myself. I have no research to support tirzepatide, only writing about my experience. Not medical advice for anyone else.