[Sheltiemom18]

Hello -

At this point am wondering if there is anybody else on the planet who has the type of small fiber skin-sensitive that I do. Nobody on another website that deals with a disease of which small fiber neuropathy can be a big factor seems to have this kind.

Cannot wear certain fabrics or pants at all anymore since January when this "thing" started with burning everywhere except a few places. Fortunately, that has died down quite a bit, but the skin sensitivity to many fabrics continues and still cannot wear pants because they rub against the legs much more than skirts or dresses. My clothes sit in the closets like some kind of nasty reminder of what my life was like before this started. In early spring bought several skirts/tops that are quite tolerable. Don't know what I'll do when it gets really cold except hope that I can wear at least some of my fall/winter jackets and coats again. Know the sweaters, jeans and pants are out - at least at this point.

Is there anybody at NeuroTalk who also has this, what are you doing/taking for it and how long have you had it?

Thanks for "listening," and best wishes,

Sheltiemom

[dahlek]

When I first got my PN? NOTHING could touch my skin! Was either too HOT or too COLD! I felt like Little Red Riding Hood, never finding 'just right'!
BUT? It got worse, to the point where for a long while I could NOT FEEL A THING in my legs and feet! Didn't know where I was putting them? Had to look, that threw me off balance and almost got back to normal...feeling and balance? Then all over again. BUT? I've a severe PN. One that keeps trying to 'progress'.
Questions for YOU now? IS it definitely positively diagnosed? If so how? Is it progressing? [Meaning, is it still crawling up your arms and legs closer to your torso?] How many neuros have you seen?
I hate to ask you these personal questions? But, most of us here have had to bleat out our 'conditions' and so forth to get the better guidance of those of us 'who have BEEN there'!
As for the skin? Eucerin 'Calming Cream' helps, as do other lotions and potions that have been posted in various parts of these boards.
http://www.eucerinus.com/products/hb_calming.html There are other products available as well. They're good for 'sensitive skin', and I HAVE IT! I have both small and large fiber nerve involvement. Sometimes both at once. It helps keep the skin moist as my body isn't doing it's job well in this quarter at all.
Read the Stickies about such things. OR pm me about it.
Yes, you can feel as if you are 'ON FIRE' at one time, then...shortly later turn into an iceberg! It's happened to me a lot? But after many years, it's 'happening' less frequently [WHEW?]. I hope this helps and don't ever be afraid to ask questions! Not one question is too simple or silly-seeming.
's - j

PS: You are NOT crazy! It's chemical and medical and complex, But You aren't crazy.

[Grannygrits]

When I started suffering with SFPN I decided something in the various products were my enemy. I changed shampoos, laundry soap, handcream, face cream--and omited various foods--trying to solve some sort of self-imposed puzzle in my life. I even rubbed Vicks vaporub on my legs trying to cool them. I also froze while I burned. I still have to wear cotton shorty pajamas so I can 'air' my legs out (from even a sheet) when I'm burning. I also wear cotton shorts & tee shirts in the house.

I do find that now I can often wear pantyhose to our Bible studies and dress-up affairs and forget the various torments that burn, etc.. for a while. I tried sleeping in hose, however the BURN came back full force. Night time means "misery". Perhaps being with pleasant people & places can help you forget the misery for a brief shiny moment.

Needless to say, nothing has really helped. My problem started in my calves, and now attacks anywhere on my body it decides to 'visit'. The latest problem is my feet filling with numb pain (can't explain it).

Best wishes for a permanant CURE!

[Aussie99]

Hi, Sheltiemom,

Just to give you a bit of encouragment, in the early months of my PN, I had alot of trouble with bedsheets. It was as if they weighed a ton on me. I had all sorts of odd things going on with fabrics too. Then it went away. So please don't despair, things can change for the best even with PN. My PN was small fibre/autonomic and it progressed to cover my entire body. For the first 3 years I had a very intense feeling of internal heat. It was awful. My ESR was also higher than normal. I suspect that my nerves were inflamed and the inflammation was part of the long healing process. I had seen 3 neuros and each with a different diagnosis. I have yet to be diagnosed as my diagnosis is a diagnosis after everything else concrete was excluded. It doesn't matter anymore to me. I am 5 1/2 years post PN and life has gone on. Also the PN has abated to the point where it's a minor annoyance rather than a huge problem as it was. I am able to do most things as per normal. I also work full time. The only advice I can give you is to not gain weight while on your meds because excess weight causes alot of health problems and then you will always think everything is PN related. Stay active,avoid toxins, take your vitamins (but not to excess),stretch/exercise,pray, and eat wholesome food.

[amit]

Originally Posted by Grannygrits

. The latest problem is my feet filling with numb pain (can't explain it).

I know what you are talking about...

sensative skin - I think is related to how many and which kind of nerves were affeceted.

[peppermintpatty]

I have this as well. It was the first sign that eventually led to my diagnosis of RSD/CRPS. My neuropathy was due to nerve injury, however, and isn't small fiber, so is likely different from yours.

What has worked for me:

*high thread count Egyptian cotton sheets
*Down alternative comforter (provides warmth but is very lightweight)
*Never EVER wearing jeans
*Very loose clothing (you can find some workout gear that works)
*I'm disabled so use a shower chair/adjustable shower head; the movable shower head allows me to keep the water from touching my leg (TORTURE!)
*Ceiling fan in room helps when I'm hot but is easily turned off when the breeze hurts
*Avoiding situations with crowds; people simply don't get it
*Using my wheelchair - people give me more space automatically because I'm in a chair; when they give me hugs, I lean forward to avoid their contacting my leg

I also have a compounded pain cream from my pain management doctor. You might want to look into that as well. I know it's extremely expensive but my insurance covers it thankfully. My insurance statements show that it's nearly $700/month, so not sure whether that's something that would be available to you, but it's worth asking.

I'm sorry to hear that you have this, and hope that you're able to discover some ways to deal with it. I know firsthand exactly how life-altering it can be.

[Sheltiemom18]

Hi, All -

Thanks so much for these replies and the good advice - sorry that all of you have to deal with neuropathy in any form. Yet it's quite helpful to read your stories and how you handle your neuropathies.

It's very encouraging to read that one of you is POST-PN, even though it took some years. Wow. How great is that!

Have had to deal cold turkey - couldn't tolerate even low-dose neurontin, let alone Lyrica after just one 75 mg capsule. Pamelor did nothing. Flat-out refused Cymbalta after reading the drug manufacturer's ton of material about it and its possible side effects/contraindications.

Just continue to test one article of former clothing at a time to see if it's become tolerable. One or two things have, so that's progress! The day I can take a shower again without feeling as if hundreds of needles are sticking me, will know that there's a light at the end of this tunnel.

[im4dexter]

Originally Posted by Sheltiemom

Hi, All -

Thanks so much for these replies and the good advice - sorry that all of you have to deal with neuropathy in any form. Yet it's quite helpful to read your stories and how you handle your neuropathies.

It's very encouraging to read that one of you is POST-PN, even though it took some years. Wow. How great is that!

Have had to deal cold turkey - couldn't tolerate even low-dose neurontin, let alone Lyrica after just one 75 mg capsule. Pamelor did nothing. Flat-out refused Cymbalta after reading the drug manufacturer's ton of material about it and its possible side effects/contraindications.

Just continue to test one article of former clothing at a time to see if it's become tolerable. One or two things have, so that's progress! The day I can take a shower again without feeling as if hundreds of needles are sticking me, will know that there's a light at the end of this tunnel.

I hope I can pass along another tidbit of information that helps. Although I don't have the same type of neuropathy, I recently experienced a day of exactly what you described. I'm dealing with failed back surgery and sever osteoporosis in my lumbar region. Lidoderm patches on my lower back do seem to releve some of the sensativity in my leg. Oddly enough so does ice. Ice on the lumbar region seems to for lack of a better way to put it tone down the sensativity in my leg. Lyrica has also been helpful.

I wish you all the best in your quest for releif. I wish us all the best. It's difficult to explain to someone that's never had it and it's even more difficult as there is no visible external sympton like a rash. Most people just don't comprehend how painful it can be.

[glenntaj]

--is very common with small-fiber syndromes; it is referrred to as allodynia: dysethetic burning/shooting pain from normally non-painful stimuli, such as clothing, due to nerves that through damage have become hypersensitized.

This can also happen in Central Pain Syndrome conditions. in which the spinothalamic sensory relays are damaged, as often happens in MS or stroke (or, truly, any condition that involves damage to that area).

During the most acute phase of my sudden-onset body-wide small-fiber syndrome, I could not tolerate clothing of any type on my body, never mind sheets or even breezes. And, I had spontaneous burning pain even without anything touching me. I am fortunate that gabapentin was effective enough in my case to knock down some of the sensation so I could put on some clothing again, though I still disdain rough fabrics and socks are difficult to tolerate.

[Kitt]

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.