No need for confusion, what you are hearing from me and the CMT folks is congruent.

I do have a brace person, called an orthotist. I know some PTs do them, but orthotists have a lot of knowledge and I found the orthotist to have the most options, and he really listened to me and gave me a good eval. An OT did my hand splints.

When you get orthotics, they give you a 'break in' schedule....(I think they disregard how much some PNers do hurt from this and get too aggressive with it and some folks give up on them....I do OK with their break in schedules).

They go something like, 'wear for 2 hours day one, 3 hours day two, etc'....that is when it is a bit painful....I don't feel my feet much, so I guess I have a bit of advantage there. My nerve fiber density from the knee down was below 2, 4 years ago, when I still felt things. I mostly get achey feet or cold feet if anything....I do not feel injuries.

When you change the foot position, you change the knee position, hip position and even the back....the foot, your gait, essentially affects places you would not expect.....often times, an orthotic will help a person with back pain for example.

Anyway, they don't have you wear the device all the time, in general, and even once broken in, such as the spinal one and the AFOs they don't want me wearing those all the time...the shoe ones they do....except I do go shoeless in the house some of the time, which they said is OK.

Your body is used to a certain gait, and when you get orthotics, you have to basically 'break them in'. I got my first ones, after I had a medial tibial plateau fracture from gait abnormalities...and it didn't heal for a year, and ended up needing an electromagnetic coil. This was before they suspected neuropathy.

I have both spinal, hand, thumb and shoe ones, and I will be getting AFOs as well, as I have mild foot drop, which is fairly recent. (I am 55, so not a spring chicken and my foot drop comes on after about walking 400-500 meters...I also have myopathy, but up in the bicep...I likely have it elsewhere but that is where they did the biopsy.)

I also have a night AFO, as my feet plantarflex at night and that causes a lot of dorsiflexor pain....I can't get my foot back in the 'L' shape without a lot of pain...so they don't want the foot plantar flexing at all at night. That will be hard to get used to, sleeping with something on my feet. I do have to take Baclofen and diazepam to manage spasms, and we are still working on the right dose.

I have not yet been thru the CMT gene testing, but the doc is leaning in that direction for diagnosis. Right now he is just calling it an autosomal dominant hereditary neuropathy and/or anterior horn cell disease. They are finding new gene loci for HN and or CMT whichever it gets called in each case, all the time, so it is a matter of when to do it, and how much it will cost and who will pay. I will know more about it in a few months. I think right now, they can identify roughly 20 genetic loci for CMT, and they keep adding new ones all the time. I have an axonal neuropathy. I know my doc is not real big into testing for the genes...I would like to know, personally, as I have kids, several with symptoms...but they are grown, and won't get tested, as they have me to get it done. My doc feels we can wait for more symptoms to arise and then nail down the gene loci better and not cost a fortune testing for stuff that is not at all in the ball park.

I will be getting my second spinal orthotic. The spine issue is more difficult to pin down as I was hit head on by a truck going 55mph, so, I have several calcified herniated discs....we do have a kid with scoliosis, so it is hard to say if my spine issues are genetic or from a good whack.

I also have hand ones for sleep and daytime thumb splints, that really do help, altho they interfere with things....and people who go to shake your hand, kinda get taken back with what is on your hand if they don't see it first...LOL, I had someone recoil a while back and it was the first time it happened....it was no big deal once they saw it was just a plastic thingie. Kinda surprised me as I just didn't think about it, as I didnt really remember they were on or that some one would think they are odd.

My old orthotics, 3 years old, are no longer correct, as my gait changed, again...usually insurance covers 2 pairs of shoe orthotics every two years...I guess mine just changed that to one pair, LOL, big surprise. With progressive neuropathy, your body changes, so your orthotics have to change. I am getting carbon fiber AFOs with a stay in the back due to my degree of hyperpronation...orthotist was afraid I would break a medial stay and that costs $$$. There are all kinds of AFOs, so it depends on what your issues are....that said, they are pricey.

AFOs and the spinal one, they do not pay for like the shoe ones, which are 'relatively' cheap....these I think I am to make due with for quite a while altho I am sure they can be adjusted?

Anyway, they hurt during break in, and this will be my third break in....once broken in and you get used to the new positioning, it should be fine, and they should not hurt....until your body changes again and you get to go thru it again. I can't stand to walk any distance, with out my orthotics. I am supposed to wear stockinette under my hand and thumb ones...but I get cheap and just cut up old thin socks. Oh, I can only wear one hand splint at night, I alternate...you can't stand to wake up and be all tied up. The night ones for my hands keep my wrists from bending inward. (I don't know if I explained that very well....) They are not like carpal tunnel ones, but custom molded plastic that also keep fingers from curling under.

Also, it is important for orthotics not to rub on skin...ulcers in PN are nasty to heal, so it is important to let the PT or orthotist know if anything doesn't go well during 'break in'. That is what people with CMT refer to when they say they should not hurt, and they should NOT hurt, past the initial break in, once your gait is adjusted and you are used to the new positioning. If they do hurt, or any skin is being rubbed off....go right back to the orthotist...right away, so you don't get nailed for paying for a bad fit! They cost a fortune.

It is also important, in my opinion and my orthotists opinion, to try to go without, so all muscle strength is not lost. Hope that clears things up.