Hi

I think I may have allodynia but not sure. Anything that causes my skin to stretch causes intense burnung/ stinging pain ( rubbing skin, stretching, even just bending feet / legs like when squatting). Being scratched on the soles of my feet felt like razor blades cut me open and that happened two weeks ago! Is this allodynia or is allodynia different.

On another note, has anybody gone on pain meds for a length of time them got off them and had less pain? My dr seems to think once I find a pain med that works I'll only need to be on it for 6-12 months then I'll be able to get off it. He feels I HSve depression ( I do now over all this pain) and that my brain is sending false signals. Once it gets relief the pain should ease up.

I don't know... My symptoms are sooo crazy, 24/7, bilateral, intense. For me to believe this is the case. I don't doubt that stress makes it worse but I don't feel like my brain is "faking " it

I do have allodynia. I have a patch on my left thigh from knee to hip which reacts to anything touching it, covers, clothes, just resting my hand in my lap. Sometimes it keeps me awake at night. Sometimes it spreads body-wide and feels like a bad sunburn. On those days I have trouble wearing even soft street clothes and furniture upholstery can feel like steel wool. Loose socks can cause it when my ankles feel like they are wrapped in tight ace bandages.

I have hereditary neuropathy with advanced SFN, confirmed by skin biopsy, as well as large fiber neuropathy with muscle loss. Five years ago when my biopsy was done I was found to have very few nerve fibers below the knee and they were breaking down and segmented at hip level. My hands and arms are similarly affected. It is untreatable and progressive. I do get significant relief from medication but I am never really comfortable.

I do not believe that allodynia is unusual with SFN.

pain meds generally dont work on nerve pain, depending on the cause of the pain.

Not sure where you learned that (that pain meds don't work on nerve pain), but you're wrong.

Everyone is different and some don't get any benefit from anti-seizure meds and/or can't tolerate their side-effects. Same goes for antidepressants used for neuropathic pain. Some people must rely upon pain meds to ease their pain in order to have a better quality of life.

Doctors don't like to go straight to pain meds for obvious reasons, but that doesn't mean they don't work. They DO. They have a high dependency rate and will take a considerable amount of time to taper off them...if that is the plan and the pain ends up being temporary. But Neurontin, Lyrica, Cymbalta, etc ALL have to be tapered as well for the same reason. They can be very difficult to get off them as well due to horrible withdrawal syndrome.

There are several members here that successfully use pain meds for neuropathy.

I certainly do not agree with this statement. While some doctors even believe this comment, and tell patients that, it is really not true nor compassionate. They will often use this line, to avoid pain management for their patients. Many doctors are afraid of prescribing opiates for their PN patients. This is especially true for the younger aged patients.

Tramadol does work for fibromyagia pain, and is often used for that. And it can also work for nerve pain, because fibro is a form of nerve disorder.

As en bloc states, everyone is different, and some people do respond to opiates, in fact. This response is not 100% but then none of the treatments for PN are 100% effective.

I personally find plain old aspirin helps my PN pain, so I use it in the form of AlkaSeltzer for rough times, like this week when we are having lots of low barometric pressure (storms) and hence I have more PN pain as a result. I also use Lidoderm patches when necessary.

Did you have the biopsy for sfn yet?
Do you mind if I ask what type of dr. gave you this opinion? Was it a neurologist?

I had allodynia via shingles. It was absurdly painful, discomforting, so on. My ankles can be tender, though usually when things are firing off.

Tramadol is what I typically take, as needed. It has been daily for awhile, though not always the total daily dose. My insurance refused a refill because of the hydrocodone prescribed for shingles being within a tight time period.

Fine, taking 1/2 or whole hydrocodone as needed since. I prefer the lack of snri effect. I am a bit of a chatterbox with tramadol at times. I'd choose the hydro, though in reality I'd prefer to attempt a green approach.

I sm hoping New York gets it together.

I feel for anyone with full time allodynia.

My best,

Jon

It is my understanding that allodynia occurs at the dorsal roots.
(like shingles does).

A member here found this interesting video..explaining it.

http://www.medscape.org/viewarticle/754961

If you are not a member of medscape, you can join quickly and for free, and then be able to view the video. It was made for doctors, but I think it explains it well enough for everyone.

Notice that in the early part of this video... opiates are discussed and how they can block nerve pain.

I have my biopsy on May 20. My primary care dr gave me that opinion. does it seem absurd?

maybe I don't know the particular language yet. By pain med, I meant any medication that has been known to work on nerve pain. right now he has me on 20mg of nortriptyline which is doing nothing but he wants me to get to 50 in the next 3 weeks.

for anybody taking nortriptyline, how long before you started to feel the effects?