take a shower without it feeling like hundreds of needles on my feet. Therefore the spray is directed away from my feet. It also has to be a lukewarm shower and I do not shower for very long. Not for more than 5 minutes or so. And I never wash my hair in the shower anymore. I would never be able to stand with eyes closed or otherwise for that matter. And I do not want to sit and do it. So I wash my hair in the kitchen sink.

I also cannot stand bedsheets hanging on my feet. I cannot stand my knees touching each other when I lay on my side (use a little pillow which helps a tad). I cannot stand my foot laying on the other foot. Certain clothing such as jeans with a thick seam are not good. Shoes (I only wear one kind now for years) are difficult to wear if they aren't the kind I wear. And, I absolutely have to wear shoes or slippers when out of bed otherwise it's like walking on bones, stones, you name it. Not a good feeling at all and can't be tolerated. My whole body is very, very sensitive.

This is all due to CMT which affects the Peripheral Nervous System (PNS). People with CMT are all different but this will never get better no matter what. It will just get worse. There is no cure/treatment, etc.

I know exactly what you are talking about here. Laying there in the middle of the night and the frustration of not being able to stand feet or legs on top of each other and just knowing you are never going to get to sleep that night. I havent seen this mentioned before.

It's often awkward difficult or impossible to find the ONE that's just rite? Not encountered it yet! But trying different ones, 'accessory' type pillows which are smaller at times, work best, but they're hard to wash and keep clean.
My skin has been soo dry at times? That I've slathered Vasolene on affected areas... and it DIDN'T help. To be candid? What mite work for you? Mite not for me, but that doesn't mean putting what's worked or not out there for you, couldn't help another sort out the which/whats.
We each develop cleaning 'routines' that work for us! From soaps to slathers! It can become an ardurous endeavor.
Hope you're getting good info from others! Keep trying things! Something out there has gotta work for YOU! HUGS!'s - j

I use 2 standard sleeping pillows stuffed into one pillowcase
between my knees and use it in different positions.
The cooler parts of the pillowcase get rotated thru the night.
My aim is to stay cool. Feet and legs and groin area burn, but
sometimes about 3 or 4 am I wake to 'ice feet' and have to shove them up to the ankles, under the comforter. Can't stand to sleep with any clothing on below the waist. Needless to say, I sleep without/on top of- the covers or sheets. I use a standard, window box fan, on the floor at the foot of the bed - set to medium high, even in winter.

many different kinds of pillows. None do the job completely. My knees don't burn they hurt. The same with my ankles when one foot is on the other foot which I am careful not to let happen.

I forgot to mention that I would never be able to stand a spray in the shower on my head. That's another reason I do not wash my hair in the shower. When I quit washing my hair in the shower a number of years ago, it was also due to the fact that it felt like bullets on my head. My head is also very sensitive as is the rest of my body.

My body just hurts. And if I overdo standing or walking my calves do burn and hurt. My balance is not good either due to muscle atrophy. Not all of my muscles of course or I wouldn't be walking or driving, etc. It's the muscles that are affected.

Hey Kitt, I have this problem too:

Even when I'm careful how I stand in the shower, I still wind up getting my feet pounded at some point. But I mentioned it to someone once who suggested that I fill the tub with a few inches of cool water first. Works pretty well!

Sheets, socks, shoes et. al.: not my friends either.

Hi,

I love the P.G. Wodehouse quote you use. How very true!

Sheltiemom

I found out last winter that I cant wear gloves. It hurts more with them on then if my hands get cold. This sucks as I work outside.