Does anyone here struggle to get a good nights sleep? A neuropathic consultant I am seeing is convinced that CMT-1A and RLS are related, and the real reason for "fatigue" in CMT is actually due to the incredibly poor quality of sleep.
Just to make it known, fatigue and daytime sleepiness are not the same things. If you feel that you are able to fall asleep in most places, any time of the day, this is daytime somnolence. With research that's been done (see below), it seems that sleep apnoea resulting in daytime somnolence is a major problem in CMT, which is being brushed aside for the idiotic reason of mislabeling it as fatigue due to muscle inefficiency. If it was physical fatigue, stamina would eventually overcome this, as it does with anything that is repetitively physically exerting.
Hi, I am in complete agreement with your comments. I was diagnosed with CMT type 1a about 15 years ago. About 10 years ago, as a result of my wife's observations of me as I slept, I was referred for a sleep study by my GP. The consultant took one look at me, then aged 55, fit and not overweight, and told me "it's very unlikely you have OSA, you don't fit the profile, but on the basis of your wife's observations we'll give you the overnight tests". The following day he had to eat his words as I had exhibited very bad OSA during the night. Since then I've had a CPAP machine, provided by the NHS, and it's become my best friend. It will run on a wide range of voltages, including 12Vdc, so I can take it away with me when I go on holiday, even when camping if my car is near the tent.
Have a sleep study. I was sure I was sleeping fine. Wrong! Yes, i have sleep apnea. First I was given a CPAP machine. I thought it was helping but I did wake with a headache and was tired the next day. The neurologist ordered a ventilator to replace the CPAP. Wow! What a difference. No more morning headaches or day time tiredness. Get a sleep study.
Just waiting for the results of mine - looks like breathing is fine, but the sleep consultant/neurologist has noted in CMT patients that there tends to be an involuntary muscle twitch in the leg that can result in broken sleep. Treating it in the same manner as RLS appears to work, but will see what happens.
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