Again, feel so sorry for those of you with this skin hypersensitivity (allodynia) thing - yeah, I too wash my hair in the sink as the shower is still a no-no. Had found extremely lightweight microfiber bedsheets at Kohl's. Light as a feather, and might try plain high-count Egyptian cotton ones but not the cotton sateen - can't do those.

As to C-M-T disease, nobody has ever mentioned it as a diagnosis in my case, so assume it's not that. So many diagnostics were negative (spinal tap, paraneoplastic panel sent to Mayo, MRI w/contrast brain to rule out stroke or lacunes, etc., CT chest w/contrast to rule out small cell lung cancer) that I keep coming back to:

1. Whether or not repeat bloodwork still shows carnitine abnormality that would indicate a genetic defect affecting the mitochondria that could cause neuropathy. Whether or not there is a CoQ10 deficiency. My neuro should be calling about these soon.

2. Dorsal root ganglionitis.

3. My autonomic nervous system abnormalities (very hypersensitive to heat, don't feel cold much).

4. Etc.

Appointment with the neuro 8/31 was just rescheduled by the secretary because he'll be out of town. It's now 9/21.

Best wishes everybody,

Sheltiemom

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.

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.

Hi,

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

Sheltiemom

I have the same issue. I have a rule that the only clothes I buy are soft. I can't tolerate if elastic from underwear touches my skin. I am picky about sheets. I 'itch' from many types of fabric.

Honestly, I have always had this issue and my mom used to knit beautiful WOOL sweaters she made me wear as a kid.....it was torture! Poor woman....poor me!

I honestly can't say when my PN became PN, but I had restless leg as a kid....so something was not right with me from childhood....

Give me soft fleece, worn cotton, and silky things...and no from itchy things.

http://www.sears.com/shc/s/p_10153_1...0070921x00003a
There are other versions but this one seems easily accessable to all....
Often used by cancer patients on meds that get sweats similar to menopause...
Worth a try.
I either turn red w/heat dispersal or BLUE with cold. For the cold? When awake I simply blow my hairdryer on LO over the bothered areas and slather lotions on like crazy. But, I don't often sweat either way. Sigh.
For me tho, the nerve senstivity is far far better than shooting nerve pains? So I take it and 'live with it' w/the help of an occasional pain pill.
As for a doc saying 'nothing to be done'? Time for you to go and get some second opinions....ideally by a top-notch neurologist. Yes, it'll take a while to see one? But it could be worth the wait.
Often docs aren't as up to date on 'things' as they'd like, or what you mite just now need? This is an older diagnostic paper for pn, BUT the charts are revealing as to how thoroughly you have been tested for the possible 'menu' of issues. For example? Have you had a Glucose Tolerance test for diabetes or pre-diabetes? Did you have a bad flu bout before this numbness started? [This was my case] Have you been tested for other immune issues? Ask if that could be a possibility once you feel comfortable with this neuro.
There are soo many possibilities for neuropathies, and there are many many more meds to try to help. Yes all have 'WARNINGS' on them? But try them and you'll likely know if you can stand them after 3-4 days [ask for samples-save $$] That way? if meds don't work? You've not got a 30 or 90 day vial of useless pills hanging around! Then go on to the next!
Honestly some things 'work'? Others 'sort of', and then there are many which 'do nothing at all aside from 'making you feel weird!' There are times tho? When trying something just mite WORK FOR YOU!
Hang in there, good medical help IS out there somewhere for you! Keep turning over the rocks! Hugs and hope! 's - j