Anybody have allodynia?
 

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?

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.

On the other note
 

Hello Canagirl, I was on Hydrocodone 10-325 for about 6-10 months. Before I started I felt that the pain level was driving me to depression. I will not try to tell you if this is your situation but I was altering between anger, loss and had no steady sleep pattern at all. With the pain there was no resting position. Bed to lift chair to walker to bed, repeat. After I started to take the hydro as prescribed, my quality of life improved. When it came time to get off the hydro(precipitated by stricter laws) it was a little strange for the first 24 hrs but better by the first 48. I had to go "cold turkey" as my Dr. could no longer prescribe by law. I take Tylenol w/codein now and looking back, the pain has reduced over time as the Tylenol helps but I know it is no warrior over real pain. I have tried and quit Neurontin as it didn't give me any relief. I hope relief comes to you, Ken in Texas.

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?

I am not an expert on this. PM glenntaj and ask him how long he had his PN before his biopsy... then that would give you an idea.

I won't answer for MrsD, but in my own opinion, this would be impossible to answer. Just no way to know whether the damage has gotten to the small fibers by now.

But that being said, if I were you, I would precede with the biopsy, as it will not only tell you whether there is damage now, but it will also provide a baseline. The baseline may be crucial for future biopsies to see if the density of fibers is decreasing or if the condition of fibers is changing (swelling, segmenting, etc).

Being that you are experiencing such profound symptoms, hopefully it will show some indications of damage so the doctor can properly address this (and the underlining) condition.

**Apparently MrsD answered while I was typing. YES, Glenn would be a good person to ask about his experience. My first biopsy already started showing segmented, swollen, and tortuous fibers...along with patchy distribution even when my symptoms were intermittent and waxing/waning to some degree. But I also had know dorsal root damage confirmed by another test.

Hi,
The basic definition of allodynia is 'a severe burning/stinging pain from a stimulus that normally would not produce such'
Over here it is referred to as Neurological Hypersensitivity - and I have it in Spades.
If either of these are a label you feel comfortable using, do so. The most important thing is finding the cause and a treatment regimen that eases your pain.
I know Depression increases pain levels, which is why I go on and on about people getting treatment for their Mental Health as much as the Physical, but here I have never heard anyone blame it for all of someone's symptoms.

Dave.

I had an acute/sub-acute start to my symptoms and went to the ER twice during the onset. I woke up one morning and it was like a bed of nails from behind my eyeball, down the left side of my face and throat, which extended down my spine and leg. It was a neurological reaction in response to receiving physical therapy the night before. I went several days at a time without sleeping due to the pain. I had burning all over my body - especially upper body. I also had some autonomic symptoms (self-determined) that made it very hard to breathe.

The damage that was noted in my neurological exam (several months after onset) was temperature loss from my wrist to mid forearm. They did punch biopsy my legs 1 year after symptom onset and it did not show small fiber neuropathy - nerve fibers in normal range and no axonial swellings (and I do have some symptoms in my legs - buzzing, burning and warm water sensations). They did not punch biopsy my arm because they said they don't do that. My case is idiopathic and technically called a "skin disturbance" for medical coding purposes.

Then Neuromusular division of the teaching hospital that performed my punch biopsy recommended that I get a pain management doctor. Even if my punch biopsy would have showed SFN, they would have had the same recommendation. In their opinion the number one cause of SFN is diabetes and the number two cause is idiopathic....which means they don't want to look for the cause because they don't think they will find one.

I have done extensive reading of older posts on this message board. I believe that Glenn had a punch biopsy 3 or 4 months after his burning started, which confirmed his SNF. This would have to be confirmed by him, of course.

And it now is.
 

Yes, I did have my first skin biopsy 98 days into my acute-onset body-wide burning small fiber neuropathy, and it was the first test among the many hundreds that had been done to that point that was abnormal. But, of course, my situation is very unusual in that I had a very acute onset--my neuropathy started in my right foot but moved up my body in hours and was all over toe-to-head within three days.

It is still a good idea to get the skin biopsy--even if the intraepidermal nerve fiber densities are still within the normal statistical limits--generally between the 5th and 95th percentiles according to the McArthur protocols--it may reveal aspects of small-fiber nerve condition, such as swellings, excessive branching, or "exploded" axon fibers that might be revelatory (though skin biopsies generally cannot indicate cause).

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

I don't know if its absurd. If the doctor has ever seen anything like this and is very wise and knows something that most doctors do not, then maybe he's right. I think a lot of things are possible when it comes to our minds and bodies. Maybe he thinks if he can calm you with medication, then your nerves can calm and your body can heal? It's worth a try.

I have allodynia. The stinging pain on my skin is so bad and it has been slowly spreading to other areas.

Maybe you can ask your doctor about capsaisin , preferably in a cream with ketamine or another neurological analgesic or numbing agent ?

There are also studies about the efficacy of low dose naltexone and ketamine that can be administered in different forms, for the treatment of neuropathic pain like allodynia .

Have you tried Lidocaine Patches? Those may help.


I hope you find some pain relief....