Skin-Sensitive Neuropathy
 

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

Got it, have had it, not used to it but deal with it....
 

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.
:hug::hug::hug:'s - j

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

You're not alone...
 

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!

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.

knowledge
 

I know what you are talking about...

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

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.

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.

The type of feeling you decribe--
 

--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.

I can't
 

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.

I too use more than one 'knee/leg/foot pillow'!
 

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!:hug::hug::hug:'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.

I've tried
 

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.:confused:

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....:confused:

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

IF you are just HOT all the time? Try this....
 

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! :hug::hug:'s - j

like Kitt my feet or legs often hurt no burn when they are on top of each other. I dont have sensitivity to the shower anywhere on my body. The over reaction to stimuli has greatly decreased over the years as ive become more numb. But sometimes it still rears its ugly head. Just yesterday i swore a part of the Rockies was in my shoe but when i took it off and look at it it was a really tiny rock.

As far as neurologists who tell people there is nothing that can be done when they have hardly done anythigng at all, could you imagine telling your boss that in your current job or past jobs. Many people would have been much worse off if we had that attitude towards our jobs and many people would not even be here if some of us had had that attitude. Doctors need to clear out the bad apples in their profession before it is done for them. The present system doesnt work.

Here is the site I forgot to include....
 

http://www.aafp.org/afp/980215ap/poncelet.html

Happy reading? or something! :) onward? - j

I think I've found what is wrong with me but still confused
 

Hello to everyone.

I have been told by 5 different doctors that I have CRPSII due to a severed radial nerve in my right wrist. Here is a small list of my symptoms that I experience on a daily bases. Burning pain, icy cold pain, deep sharp pain, numbing pain, tingling pain, over sensitivity to air movement, loud sounds, vibration, touch, air conditioning, summer heat,and many more for almost 4 years. As time passes the pain is getting worse. I have had 2 surgeries to fix my nerve with no success. When I take my shower this causes my whole arm to really start hurting and increase my pain many times more for the rest of the day from when I get up as far as my pain level is getting up out of bed. Some days I just want to cut off my arm due to the way it feels like it has follow en a sleep but is very painful throughout the whole arm.

Each day is so hard to deal with because the pain is so bad but everyone looks at you and see that you have no physical deformities that people can see and relate to. So I just grin and bare it.

Now what do you fine folks here think I have from what I have described. Any help would be greatly appreciated.

Thanks

Dennis

I forgot doctor #6 said that I did not have CRPSII but was not sure what I had.

To Dahlek: The link above you initially "forgot" to post is probably the best listing of the various types of neuropathies and which diseases/syndromes/condition are the result of each that I've seen so far. Thanks so much for it.

Don't know if there will ever be an answer for the sensory skin thing I have. My Sjogren's Syndrome is listed twice as a cause at that website (for purely skin sensory), so more than likely it is. However, the ray of hope thing still shines, and if my neuro-researcher wants to test further for a cause, that's fine with me. They can draw all the blood they want in the search.

Please understand, that even docs aren't exclusive?
 

In their diagnoses...that is! My goodness, My own neuro keeps mushing my diagnosis as things change and 'overlap' with other neuro and medical problems. Keep at it! As THE patient? It's up to you to almost but 'not quite' FORCE the diagnosic issue!.
Essentially, tests are tests, BUT if all the needed or right tests are not done to either include or exlude other issues? Then the doc is being a 'slug' in my book.
Not to mention the fact? That you could have MORE THAN ONE issue? DUH? Like it's not happened? It HAS to me and to others. Best to get it all on record before rather than after... if you know what I mean.
Such web sites are TOOLS, the key is for YOU to use them well? And, to your advantage in terms of getting better care.
:hug: Thank others for that site? and go GET 'EM! And, get better somehow! - j

Again, thanks for your responses - they're very much appreciated. This Board has a tremendous amount of information for neuropathics. So glad to be here.

Hoping that everybody sees at least some improvement or finds the cause(s) of their own neuropathy(ies) - and treatment that will help.

Best wishes and cheers,

Sheltiemom

NO neuro is ever going to do every test listed,, they will not take up your time and especially THERE time since alot of those test are probably specilized,, if its not the obvious,, (B12),, or some other common cause,, (diabetes),, there search will end with the word Idiopathic,,, then your nightmare starts,,

Sorry to say it Hurting,, but your in the same boat as a lot of us are,,, the ones that have no answers,, the ones who keep looking for answers,, and basically were screwed

I have to say differently?
 

I quit the first 'do nothing' neuro, and the second was going in super slow motion as to diagnosis. I sought a third opinion from an area teaching hospital? And got the head of the neuro dept! On a cancellation no less!
He looked at me, had me do the standard 'close your eyes' test, etc and immediately zeroed in on diagnosis [w/o telling me] but, ordered a battery of blood tests and f/u MRI's, X-rays, Nerve conduction tests [done by neuro #2's staff] and spinal tap. All came out to CIDP. Ruled out were 'West Nile', Lymes and a few other 'regional peculiarities'. By going the extra step? Being consistent in what I related, how I related progression and bringing all my prior test results with me to doc #3? I got DIAGNOSED! Now over 7 years later? I've received far better treatments and medical care than I ever expected!
I am saying this because? #1 I'd likely be totally incapacitated now or dead without the treatments & care I've received; #2 Never take NO for an answer-ask what if?what else?; 3# Sell yourself and your case to get second opinions if you can and as best you can! Now, that doesn't always mean going straight to the Mayo or wherever? Web up http://health.usnews.com/best-hospit...d-neurosurgery And find the best you can where you live!
Try this route? It just mite help you! Especially IF, [as in my case?] it's getting worse! What have you got to lose but your life? Hope and :hug::hug::hug:'s - j

Pins and needles in contact with clothes
 

I a 27 year old male and have been suffering from the exact same thing! Its been going on for 20 months now started all of a sudden as a burning back pain then moved down to my legs. I can't wear pants as I feel a 'Pins and needles' sensation and burning when I wear clothes!

How are you coping? Did you find a solution?

Welcome travellinbug. :Wave-Hello:

This is an older thread, there are some more recent ones if you search "skin burning" or "sunburned feeling". It is not a rare neuropathy symptom but it is certainly an unpleasant one. Half of my wardrobe is geared around days when clothes literally hurt. I had this all over my body a few years ago, it was agony, but it eventually shrunk down to just my left thigh. it is uncomfortable but bearable.
This is not to minimize your discomfort, but you may get used to the "pins and needles" feeling. It is a constant for many of us. The burning and pain are more problematic and members here use a variety of medications and supplements to cope.
It is definitely harder to deal with all this as a young person. You are at a time of life when everyone expects you to be strong and healthy. Are you seeing a neurologist?

Maybe
 

HYi Sheltiemom, probably an unrelated story, but many years ago I had an allergic reaction to a medication named Ru-vert. I could not wear clothes as my skin was on fire. I was lucky as I knew it was a reaction and went to the ER and was given another med called Anti-Vert. Have you started anything new, or eaten anything new? Good luck Ken in Texas