Log in
Charcot-Marie-Tooth UK
1,329 members539 posts

diagnosed this year and have difficulty walking in anything other than trainers

I was diagnosed with CMT1 this year and forget I have a condition when I wear trainers but as soon as I put on any shoes/boots with even a low sensible heel I have real difficulty walking and my legs seem to cease up and it becomes more and more difficult. So I really can only wear trainers or uggs ie. something with support under arch. It makes it really difficult to dress up. Does anyone else experience this. I'm lucky the condition doesn't affect me worse (yet) but just don't get why I can't even walk in low sensible heels like chelsea boots.

11 Replies
oldestnewest

Hi Stevie,

Sorry you are having to come to terms with your CMT diagnosis. I hope you have some supportive people around you.

Inability to walk in high heels or any glamorous shoes is pretty standard for us, I'm afraid. Many of us have weak ankles, and/or a tendency to put our weight on the outer edges of our feet, and/or extra-wide feet and/or extra high arches...... so, generally, seeking out footwear is not much fun.

1 like
Reply

Hi, I can't wear heels and have not done so for many years. I wear Ugg type boots and quite heavy Ugg style slippers during the day and to go out on dry days. However, you get some lovely pull on trainers that are fairly dressy, I have a pair of lovely turquoise with white soles for going for a meal, mainly as I always wear trousers these days. Also, found some ankle boots that have very small heels like half inch that are supportive for my ankles. Mind you I have never been a very dressy up person anyway, but need to have comfort for my feet even when I did work. You get used to having to adjust and to me not being in pain and steady on my feet is more important than fashion and falling like I have in the past. X

Reply

Do you have a wide or narrow foot ? Any particular makes of trainers ? I have tried many but have a narrow foot and all have been too wide.

Reply

Hi Stevie

I cannot wear shop bought shoes at all - the last time I had my feet measured at Clarks, it said I would need size 6 with a width of N or O! My feet are smaller than a size 4, so a 6 would be impossible. I have had my shoes made via the NHS for many years now - I go to a Surgical Appliance Clinic. It is free, which is something, and they make boots for me - I have weak ankles, so have to have extra support around my ankles. Your GP will need to refer you.

Reply

I'm 66, have t2d and cmt. I can't feel my feet ( and hence the floor ) at all. I go barefoot at home as anything on my feet makes walking and balance more difficult. I only wear shoes outdoors and when I do I feel like I'm on stilts and wobble about all over the place .

All the best!

1 like
Reply

I’m 68 and was diagnosed in 1991. My CMT type 1(a) started to go much faster the last 8 yrs . I have special shoes and boots made to support my weak ankles and several pairs of special insoles were made for me which helps a lot

Reply

Severe early onset cmt hereditary neuropathy 5x. Take the Gene test

Reply

Hi I have the same issues with shoes. I wear New Balance trainers with Cush+ soles and they are about as close as it gets to allowing me a normal gait without using any aids (except in-soles as my right foot rolls in considerably). I find it’s mainly to do with the weight of shoe. The lighter the shoe the better the walk. Any heel is a no-no!

Reply

Hello, I am 52 and for the last 30 years I have worn the classic doc martens boots as they provide the support I need. For other times I now wear light weight hiking boots such as Scarpa Terra. Totally glamour free but the boots give me confidence although a walking pole is often taken out with me.

Good luck!

Reply

Hey Stevie, How old are you? I have had foot reconstructions and that has been really helpful. Where are you?

Reply

Hi, Sorry to hear this and recognise your storie.

I am 53 and diagnosed with CMT1a only recently (finally after many surgeries starting at the age of 6). I have a similar problem as you describe.

My reason can be explained as follows;

I need to pull up my feet much higher which has an affect on the muscles in my hip and this has other affect that i don't need to explain.

What is important to mention is that that trainers are designed to help your body to move forward. You are kind of pushed forward by the form of the shoe and sole.

if you have flat soles and less curved shoes you don't have this motion which needs to be compensated by lifting more up and forcing your body to move forward. The flat soles shoes are also much heavier which doesn't help the lifting up. The difference is tremendous from an effort base and the difference in distance i am able to walk is extreme because of this.

Only recently I have adapted new shoes that do exactly the same as my trainers and are equally light. I wear them now in the office and to more formal out of work occassions. wish they would have explained this to me earlier...

Hope this helps you in explaining and in your search. Good luck!

Cheers

Reply

You may also like...