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

[Zoe-Leanne]

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!

[CMTerSam Volunteer]

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

[CMTUnitedKindom Partner]

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.

[CMTSECRETS in reply to CMTUnitedKindom]

Oh Karen that reply couldn’t be more patronising to cmt sufferers with severe cmt with phrenic nerve palsy as myself saying I we aren’t more breathless ! Shows how ignorant you seem to show out , with phrenic nerve palsy it’s more of a struggle when one is breathless not the same as with someone with working phrenic nerve palsy is it ?

People Share your experiences and true simptoms more regularly people like Karen will dismiss it as normal but The more cmt sufferers tell what they experience even her will stop patronising us...

I’m sorry but I cannot sit back and watch all this brainwashing.

[CMTUnitedKindom Partner]

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

[CMTerSam Volunteer]

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

[CMTSECRETS in reply to CMTerSam]

She’s distracting you by pointing out we need to exercise to get rid of a CMT CAUSED PROBLEM !

I’m skinny slim young person I got those problems and it’s worsening because they’re wasting away !

[Hidden]

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.

[CMTSECRETS in reply to Hidden]

Muscles are weakening and wasting nerves aren’t helping because cmt.

[Zoe-Leanne]

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!

[CMTSECRETS in reply to Zoe-Leanne]

Zoe Leanne unfortunately you’re not the only one with CMT WITH BREATHING STRUGGLES, Ask your fantastic doctors to check your PHRENIC NERVES if they’re working they support your respiratory system .

We all have that thought in common “am I imagining this ?” , no you’re not imagining it, we take notice of a problem we must all talk about it all even the smallest detail... with time CMT will prove you’ve been right all along. Stay managed stay in control of cmt as much as you can .

[strawberryshortcake in reply to CMTSECRETS]

Hi my doctor asked ME why I was breathless. I thought they were supposed to have the answers.

[KarenNic]

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

[gunner]

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!

[John1945]

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 ! ! !

[Jealousone]

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

[Amanita]

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.

[CMTSECRETS]

Yes it is CMT RELATED.get your neurologist to check your phrenic nerves, muscles waste and weak away leaving heart to struggle making you forcing yourself breath speak eat etc, one thing leads to another if left unchecked unmanaged. Don’t worry just be on top and ahead of your cmt, try not to ignore it, I often did .

[Chriren2702]

Yes I too suffer with breathing problems if I do too much. Amongst everything else I have all of sudden developed high blood pressure. What Next!!! Up until a month ago I was working 2 jobs, but due to me not being able to cope i have had to pack 1 job up. I miss the extra money now.

Have a wonderful week xx

[gunner]

Hi I think it must be as I have the same, hills stairs are all difficult and really cause muscle fatigue and happens fast.i get breathless and at times it feels as if someone has poked me in the right side of my chest and sometimes works across the whole chest. I have to use a fostiar inhaler now! I personally think even the people who apparently understand the effects of CMT don't !! But it's quite difficult to articulate the things we feel, like at times it feels to me that my entire insides are being pushed down and heavy and my brother has also complained about this as he also has CMT. I also have back weakness and really painful right side which I'm told is due to an enlarged liver. Cmt causes do many problems I don't think they are fully aware. Also when I was diagnosed I was told only 1 in 250k have it, I'm sure you must know that it is said to effect at least 1 in 2.5k maybe it's even more as so many don't get diagnosed until later in life. So could be easy higher. Since I was diagnosed my mother has looked into the family and she can now name about 12 just in our family so makes you think a!?? Anyway that's it for now from me, good luck with everything I feel you will need it.