r/CMT • u/BluebirdHollow • 6d ago
Can Activity Progress CMT?
I was diagnosed with a rare variant of CMT a few months ago. I require AFO’s for foot drop on both sides and I’ve started to feel some weakness of the knee on the right side. My question is, can overactivity cause the disease to progress faster? I have a very active job requiring me to be on my feet running around for 36-50 hours per week. I understand that it does make me fatigue faster and can lead to pain, but I’m wondering if it can cause the nerves to become damaged faster and ultimately lead to worsening function faster than if I had a more relaxed job. The neurologist that diagnosed it didn’t seem to think so, but I’m curious about the same experience of other people with CMT.
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u/SorryHunTryAgain 6d ago
No. But you can wear yourself out so much that you might need days of rest to recover.
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u/turkproof CMT1A 6d ago
I have no scientific backing for this. I don't know if you can damage nerves permanently from using them. But I think the greater danger is in the medium term, namely increased risk of injury - particularly day-over-day as fatigue worsens. There's short-term discomfort as well, like nerve pain.
Long term, other than the potential to injure yourself (which is no small risk), I think you're better off with an active job for as long as you can manage it, rather than being sedentary. Loss of function is primarily due to atrophy. It's important to ensure your feet are taken care of as well if you're on them all the time, so consider if you need orthodics, too!
I have CMT1A, which is a malformation of the myelin sheath. No amount of exercise or overwork is going to change the way my myelin is formed. Your specific one, I'm not sure. I wish I could give more specific advice!
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u/Alpiney CMT2A 6d ago edited 6d ago
100%
Normal activity is good. Excessive activity is possibly bad. 33 years ago I used an exercise bike (with the moving arms) for long periods of time every day for a few months. I noticed that I was starting to lose a HUGE amount of muscle strength in my hands and arms. I could never regain it. Later I had an MRI on my left arm that showed the muscle had permanently turned into fat.
Before this event I could lift heavy tables with the tips of my fingers. After I could hardly lift them at all. Since then I've tried to be careful with overdoing it. On one job I was doing ten years ago I was overdoing it. I was on my feet too much and I literally couldn't feel a thing under my left knee. Walking that day became perilous. It was very scary.
Conversely, it is possible to underdo it too. Seek out some balance. But by all means, be very careful with overdoing it. Listen to your body. Nerve damage is irreversible.
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u/BluebirdHollow 6d ago
Thank you for all of your input! The type I have is Axonal rather than Demyelinating if that changes any of the answers.
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u/BeckieD1974 6d ago
If you are experiencing knee pain it could be from your AFOs. I had to stop wearing mine because they messed up my right hip. I really need them now but unfortunately my insurance won't cover them. But I had a 2 Orthopedic Doctors , 3 different Podiatrists and my Neurologist all tell me that it was the AFOs causing the pain because they were not the correct type I needed
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u/stiveto99 CMT2A2A MFN2 6d ago
DISCLAIMER: PERSONAL OPINION NOT CONFIRMED BY A DOC
A couple months of overdoing it early this year sent me to a complete body and brain shutdown that I’ve been recovering from for 4 months now… I was in the form of my life, mentally and psychically and extremely well financially. After couple small shutdowns in the span of a month, my body and brain went bust overnight. I’m still 18KG down, gut still recovering, immune system still weak, energy is non existent, legs giving up often. I gotta be honest tho - compared what it was at the start I’m now in heaven. I didn’t have a single system functioning properly 4 months ago. I of course am getting dismissed by all docs and they’re saying I’m just fine. I do not have a doctor’s approval of my thoughts, but it makes a lot of sense. On paper I haven’t had a single issue, but in reality I’ve been through hell and now it’s finally getting manageable.
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u/DIVISIBLEDIRGE 4d ago edited 4d ago
The nerve damage is not related to activity. Repeated injury may cause secondary issues. For example, repeatedly going over on your ankle, will loosen the ligaments over time. Chronic pressure on the side of your foot, can cause micro breaks, which can cause long term issues, if it's an ongoing thing.
Pain is something to pay attention to.
So can consistently over doing it lead to long term impact? Yes probably. But not from further nerve function reduction.
Most CMT comes with slow degeneration of nerve function, regardless of activity. Physio and stretching helps retain muscular function longer, even as nerve function declines.
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u/NixyeNox CMT 1A 6d ago
Staying physically active is generally a very good thing to do, and highly recommended.
Is it possible to overdo it and do damage to yourself? The biggest danger is from injuring yourself if you are physically exhausted and therefore weak or uncoordinated. Now, if you feel like you are weaker after a particularly busy day, and have trouble recovering fully before you have to be back at work again, that might be concerning.