We know why we get tired with CMT – it’s no big mystery. It takes far more energy to walk, stand, balance and generally do normal, everyday things when you have a condition like CMT, than if you don’t. It’s a simply physiological fact caused by some muscles compensating for others, and having to do jobs they were not designed to do, and it’s probably the ONLY symptom of CMT that is common to each and every one of us.
All we can do is manage it as best we can, and the following is taken from the NHS Choices website, and gives simple pointers to how we might be able to help ourselves.
Eat often: a good way to keep up your energy through the day is to eat regular meals and healthy snacks every three to four hours, rather than a large meal less often.
Get exercise: you might feel too tired to exercise, but regular exercise will make you feel less tired in the long run and you’ll have more energy. Even a single 15-minute walk can give you an energy boost, and the benefits increase with more frequent physical activity. Start with a small amount of exercise. Build up your physical activity gradually over weeks and months until you reach a level that you are comfortable with and doesn’t cause you any additional pain or discomfort.
Get enough sleep: it sounds obvious, but two-thirds of us suffer from sleep problems, and many people don’t get the sleep they need to stay alert through the day. The Royal College of Psychiatrists’ advice on getting a good night’s sleep is to go to bed and get up in the morning at the same time everyday; avoid naps through the day, and have a hot bath before bed (as hot as you can bear without scalding you – be careful if your CMT has impaired your sensation – get someone to check the water for you, if you’re in any doubt as to how hot it is) for at least 20 minutes
Drink more water: sometimes you feel tired simply because you’re mildly dehydrated. A glass of water will do the trick, especially after exercise.
Lose weight: if your body is carrying excess weight, it can be exhausting. It also puts extra strain on your heart, which can make you tired. Lose weight and you’ll feel much more energetic. Apart from eating healthily, the best way to lose weight is to be more active and do more exercise.
Reduce stress: stress uses up a lot of energy. Try to introduce relaxing activities into your day. This could be working out at the gym, or a gentler option such as listening to music, reading or spending time with friends. Whatever relaxes you will improve your energy.
Talk about it: there’s some evidence that talking therapies such as counselling or cognitive behavioural therapy (CBT) might help to fight fatigue. See your GP for a referral for talking treatment on the NHS or for advice on seeing a private therapist.
Cut out caffeine: The Royal College of Psychiatrists recommends that anyone feeling tired should cut out caffeine. It says the best way to do this is to gradually stop having all caffeine drinks (and that includes coffee and tea and cola drinks) over a three-week period. Try to stay off caffeine completely for a month to see if you feel less tired without it.
You may find that stopping caffeine gives you headaches. If this happens, cut down more slowly on the amount of caffeine that you drink.
Drink less alcohol: although a few glasses of wine in the evening helps you fall asleep, you sleep less deeply after drinking alcohol. The next day you’ll be tired even if you sleep a full eight hours.
Cut down on alcohol before bedtime. You’ll get a better night’s rest and have more energy. The NHS recommends that men should not regularly drink more than 3-4 units a day. Women should not regularly drink more than 2-3 units a day. ‘Regularly’ means drinking every day or most days of the week.
Exploring the experience of fatigue in people with Charcot–Marie–Tooth disease
Neuromuscular Disorders, Volume 22, Supplement 3, 1 December 2012, Pages S208-S213
Gita M. Ramdharry, Anna Thornhill, Gill Mein, Mary M. Reilly, Jonathan F. Marsden