My SFN started in my feet a little over 3 years ago I guess and started moving into my hands about a year ago. Finally got dx a few months ago.

Anyway, about 4 months ago or so (my memory does not work so good anymore) it began, moving up my legs and arms and in my butt. In the last couple months it seems to have moved across most of my body, legs, arms, back, shoulders. Its like having a total body sunburn. Drying off my hands and body hurts, like drying off with a terry cloth towel when you have a sunburn. I am currently on 30mg of Methadone and 3600mg of Neurontin. This seems to cut about 70-80% of the pain and so far, makes life liveable. And no, I don't have a real sunburn! :-) lol I can start to feel the Methadone working slightly less, so I know at some point in the near future, my neuro doc will have to up the dosage on the Methadone. It has hardly any side effects to me other than constipation, which I treat with OTC stuff, no biggie there. And I get tired a couple times during the day. But driving and working 5-6 hours a day is no biggie usually.

My question is, is the sunburn feeling normal for SFN when it is effecting your arms, back and such? I am pretty medicated, so I don't actually know all how it would really feel once off all the meds (though I would guess very painful and debilitating), but is this the normal pain? I don't seem to get any tingling or electrical feeling on my back or on my arms and legs, just in my hands, feet, and butt. Also, do you get any itching on your skin? I have some and not sure if it has anything to do with my SFN or just the dry air here in AZ. I've never really had much skin itching in the past and I've lived in AZ for 15 years now.

Thanks in advance for any thoughts on this.

Jay

I have a comment about methadone. It is the only opiate that interacts with other drugs and also when you get dehydrated and low in potassium and magnesium, to stop the heart.
This is called long QT syndrome. I have a post on the stickies in Chronic pain forum about this.

People can be born with long QT, and then when stressed or using certain drugs, their heart stops. In normal people the stressors can be low magnesium and potassium, or addition of other drugs to the mix. The links on that thread give 4 lists of drugs to watch out for. Data comes in every day on this subject, so do be careful.

It is recommended today to have an EKG done with attention to QT segment abnormalities. These typically are hidden until the fatal day. The problems with fentanyl are just potency ones..that fentanyl is so strong and may be absorbed too fast.
That problem is different from the methadone one.

Narcotics do release histamine in some people, and this leads to itching.

If you find you have dry skin, I'd suggest you start eating or taking Omega-3 supplements. When you see dryness in the skin, you are also having problems internally as well. I have a
thread on Vitamin forum that addresses this subject, which is huge and very important= http://neurotalk.psychcentral.com/thread6092.html

Hi Jay
I, too, live in AZ and in the beginning wondered could it be the dry climate or the junipers. Went to San Diego with lots of humidity and no junipers and NO difference. As far as your "sunburn" I could well describe mine as similar. I usually describe mine as feeling like I am in a sand storm with hot sand hitting me but the sunburn feeling is close to what I would describe too. I am 64, female, started about 18 months ago...now feet, legs, hands and arms...not in the butt YET! I also have some really weird episodes where areas in my upper arms or thighs feel very cold to the touch while the areas above or below them have normal temperature feeling. These cold areas actually feel like them are burning really bad and I only discovered the coldness when I went to try to "rub away" that awful feeling. Do you notice anything like this? Are you seeing any specific peripheral neuropathy doc? I just saw Dr. Levine in Phoenix (after seeing the local neuro in Prescott) and had a bunch more lab tests ordered and had the skin biopsy done last week. Guess we will see, (if anything) as NCV, EMG, GTT, anti HU, etc. all normal.

--is very common with small-fiber syndromes, although other sensations can be there simultaneously.

This usually means, at the least, that the nerves involved are damaged, but not dead--that would involve numbness. People sometimes report both these dysesthetic sensations and numbness in the same area, as individual fibers are at differenent stages of damage.

The hope is that if a cause of neuropathy can be found and treated, or, in idiopathic cases, the initial damaging process relents, and the deterioration arrested, that the small fibers will eventually start to regenerate, and the dysesthetic feelings will lessen over time. But it may be a LONG time (years).

My neuro believes my SFN is most probably caused by my auto-immune system going haywire. I have not had many tests, mostly a bunch of blood tests which haven't shown anything yet. I do go back to my neuro docs in early December, so maybe he will have some new info for me then. They probably won't ever find it, my insurance coverage will not pay for endless testing. And after 2 years at Mayo, I am tapped out for cash for medical purposes.

I am going to an acupuncturist who thinks she can possibly heal some of the nerves with needles and electrical stimulation. I only go because a dear friend is paying for it and she really wants me to give it a try. The electrical stimulation has proved to be difficult because I cannot feel it and then it hurts too much when she barely turns it up. It has proved difficult to find a good setting. The electrical stimulation seems to trigger my dystonia which causes my legs to twitch and that hurts real bad when you have a bunch of needles in your legs!

So onward I go! LOL

Jay

I think you should consider looking into the
www.lizajane.org site for lists of the testing for PN.

You also should probably have a 'skin punch' biopsy test done.
It is non-invasive, and has no after affects.
(see the recent topic 'Skin Punch...Gold Standard' )

If no facility near you does one, Johns Hopkins has a kit with
instructions, and how to send it back to them - for analysis.

Do you have a link for this? I would definitely do this if I could but can't find anything on the John Hopkins site about it.

You'll have to call the Dept of Neurology to get details
The Head of the Dept is Dr. John Griffin (my neuro)
& his administrative nurse is Denise @ 410-955-2227
or fax a request to Denise @ 410-502-5459
they probably will refer you to the lab dept (or another dept ?)
and specifically to the person who handles the kit.

This procedure has to be done in a
doctors office or hospital, so they may ask
for a referral from your neurologist.
I think it has to be pre-paid,
so insurance has to be in on it too.
But a phone call will clarify whether it is or is not
feasible for you & your doc.

Many thanks. I will look into this next week. I am in the UK so not sure if there will be issues shipping the sample... obviously I'd get express super overnight whatever for delivery, but I'll have to see if this would be OK. I guess shipping from the UK with DHL or similar wouldn't take a great deal longer than shipping from some faraway US state.

My UK insurance won't cover this so I'll look to just paid for it myself upfront. Actually, some of you may know better than me - will they do this for me as a UK citizen? I assumed the US health system generally worked that if you're able to pay for it, they'll help you, but never actually had any care outside of the UK. I am in the USA five or six times a year anyway so if I wasn't able to get it done here and mail it, I could do it there.