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.

That's good news on the aspirin.

MrsD have you found NSAIDs to work for your PN?


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Yes, aspirin works the best for me. I also have arthritis...so I think compression is an issue for me these days. My original PN was from hypothyroidism.

AlkaSeltzer is very nice, as the bicarb blocks pain receptors for a short period too. There have been some papers on the acidic nature of pain... at the receptor level.
example:
from http://www.ncbi.nlm.nih.gov/pubmed/19655111

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?

If your symptoms are relatively recent, a skin punch may not
show much pathology. The studies being done on the dorsal roots in primates showed that the damage at the dorsal root level for a period of time, then migrates down to atrophy the peripheral nerves. Since they are not receiving the proper signals from the dorsal roots, then they atrophy away, but this takes time.

If you have had the allodynia for a longer period of time, then the skin punch may show more damage. But nothing is 100% yet.
I am just putting this out there, in case.

If you have had the allodynia for a longer period of time, then the skin punch may show more damage. But nothing is 100% yet.
I am just putting this out there, in case.[/QUOTE]

Ok. So my twitching started exactly a year ago. In august, I developed electrical feelings, burning, prickling, tingling etc. the burning subsided a bit and I had gotten used to the lingering lower level burning. then following acupuncture in December all hell broke loose in my body with excruciating burning and stinging literally every square inch of body and it NEVER stops, not for a second. The sensitivity to everything has been for about a month.

With this timeline is it likely the biopsy will be negative? I ask because Canada doesn't perform this test (or at least not where I live) so I have to pay $2500 to get it done by therapath in new York. I don't think I could get the neuro to redo this later if it came back negative. Should I postpone past May 20?