Is it normal to feel breathless or tight in the chest with CMT?

I often feel breathless when simply walking up and down stairs or down to my local shop! It feels like my chest is being grabbed from the inside. Not sure how normal this is!

11 Replies

  • I don't know if it is "normal" for a CMTer, BUT I DO feel like this all the time too when doing a few steps, or walking short distances x

    I'm sure others will be along to offer their opinions too.x

  • I think its "normal" from the point of view that, with a few exceptions probably, we're inherently unfit! I walked a couple of hundred yards last night and it felt like I'd run a marathon! I was puffing and panting like a raving idiot!

    You may well have read that CMT can cause diaphragm weakness, but the people who have this tend not to be anymore out of breath than the rest of us, on a day to day basis - it almost always manifests as sleep problems, because the diaphragm isn't being assisted by gravity when you're lying down.

    And don't forget, having CMT does preclude other conditions like asthma, so if you're worried, do get it checked out.

  • That should read "doesn't preclude"....!

  • Interesting point about us CMTers generally being unfit lol... that is a good point!

  • I get breathless too when doing the smallest of tasks, I have asthma and my doctor has changed my inhalers several times but nothing helped.

  • Yes, I sometimes wonder if its just me and my mum that get like this, as we dont know anyone else with CMT. I have asked doctors about the breathing plenty of times but get no answer. Thanks everyone at least now I know that Im not the only one in the world that feels this way! :)

  • Lol I've noticed that my new leg splints are acting like those 'butt toning shoes' lol At least my hubby says they are working on my saggy bits lol

  • Hi Zoe I get this problem with regulating my breathing and get out of breath very easily. From what I can gather it can be a problem to sum and I am goin to report it to my Gp as we may need a sleep study on us to see how it effects us when sleeping. It does effect my sleeping how much exercise I can do. Not much!

  • Hello Zoe>>>>

    Any type of chest pain must be checked out by a doctor at the earliest opportunity !

    C.M.T. can cause chest pain due to its neuromuscular/musculoskeletal spasms: You could also have 'posture' defect / do you snore / it could be 'sleep apnoea' / throat muscles go "floppy" whilst you sleep / also oxygen deprivation to brain / angina / heart not getting enough oxygen due to narrowed/blocked arteries ?

    Get medically checked out NOW ! ! !

  • Hi Zoe Leanne, I feel breathless with any activity, even putting on socks or shoes - I hate shoes with laces, they are the worst

  • Hi, Zoe-Leanne

    I was always worse than rotten at sport of any kind, and consequently detested - and dreaded - it , but for a few years I did cycle nearly three miles to school, and back. Every day I arrived hot, tired, and out of breath, and my endurance never improved at all with practice. As an adult I cycled rather slowly half a mile to the shops and back once or twice a week, and again got tired and out of breath. Running a few yards for a bus was even worse.

    I always generated a great deal of heat but virtually no speed and always felt as though I were double-decker bus with the engine of a lawn mower. This was when I was slim and decades before I heard of CMT. Now I get out of breath climbing the very gentle slope of the brand new ramp up to my front door incredibly slowly. And bending down.

    Getting out of breath has always been normal for me, and it has never occurred to me to seek medical advice about it.

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