[malawigirl08]

Does everyone elses pain move around, one day my toes hurt, next it is a pneumatic drill in the ankles, then my skin feels as though it has been scalded and so on......I know the variety is interesting but is it normal?.. Or have I been diagnosed with SFPN and the diagnosise is wrong....again!

[Sheltiemom18]

Originally Posted by malawigirl08

Does everyone elses pain move around, one day my toes hurt, next it is a pneumatic drill in the ankles, then my skin feels as though it has been scalded and so on......I know the variety is interesting but is it normal?.. Or have I been diagnosed with SFPN and the diagnosise is wrong....again!

If you were diagnosed with small fiber sensory neuropathy via skin punch biopsy, then that diagnosis is correct. That is the gold standard for diagnosing it. EMG does not find it. Mine started with the feeling of having a bad sunburn in many areas at once.

But you might also have large fiber and/or other issues causing those other types of pains you mentioned. Small fiber will produce sticking pain (as in needles), tingling sensations, hyperanalgesia, burning pains and allodynia (I have that, too) and maybe other things. Whether or not it produces pneumatic drill type pain I don't know.

Thought I'd answer and describe how non-length dependent SFSN has affected me in case you weren't altogether aware of the various types of sensations it can produce.

Best wishes,

Sheltiemom

[Mere]

I was also diagnosed with skin punch biopsy as having SFN. I also have dysautonomia (which I am told is related to the SFN) and undifferentiated connective tissue disease (arthritis and autoimmune). My SFN started - in a frank sense - about 15 months ago when I was hospitalized for intense abdominal pain and diagnosed with gastroparesis. Although... I have had dysautonomia for about 17 years. I suffered "pins and needles" in my left hand with severe pain in my upper arm. It still acts-up. I also had numbness in my mouth, face and head for quite a while. The face/head/mouth problem slowly dissipated and has not returned... fortunately...

The worse for me is the dysautonomia. When I have severe dysautonomia, I feel like I am going to die... literally... when I suffer from that... not to get too dramatic, but that is how I feel... Luckily, it only flares in a dramatic proportion every few months, or so. I feel like Sh** every day, but, I get along. I have even started exercising in the hopes that it will help. It is difficult and I miss going to the gym sometimes, but I push myself and if I am too sick, I don't go.

I have these problems but I do not have a definitive diagnosis as to why this is happening. My doctors think it is all autoimmune - but my autoimmune studies are inconclusive - even though I have inflammatory arthritis and other AI symptoms (much like Lupus), my titers are negative.

I have learned to just "hang in there". Although at times, it just feels all to difficult to do so...

In other words, I understand how you feel.

Mere

Originally Posted by Sheltiemom

...But you might also have large fiber and/or other issues causing those other types of pains you mentioned. Small fiber will produce sticking pain (as in needles), tingling sensations, hyperanalgesia, burning pains and allodynia (I have that, too) and maybe other things. Whether or not it produces pneumatic drill type pain I don't know.

Thought I'd answer and describe how non-length dependent SFSN has affected me in case you weren't altogether aware of the various types of sensations it can produce...

Best wishes,

Sheltiemom

[Feel the Burn]

Originally Posted by Mere

I was also diagnosed with skin punch biopsy as having SFN. I also have dysautonomia (which I am told is related to the SFN) and undifferentiated connective tissue disease (arthritis and autoimmune). My SFN started - in a frank sense - about 15 months ago when I was hospitalized for intense abdominal pain and diagnosed with gastroparesis. Although... I have had dysautonomia for about 17 years. I suffered "pins and needles" in my left hand with severe pain in my upper arm. It still acts-up. I also had numbness in my mouth, face and head for quite a while. The face/head/mouth problem slowly dissipated and has not returned... fortunately...

The worse for me is the dysautonomia. When I have severe dysautonomia, I feel like I am going to die... literally... when I suffer from that... not to get too dramatic, but that is how I feel... Luckily, it only flares in a dramatic proportion every few months, or so. I feel like Sh** every day, but, I get along. I have even started exercising in the hopes that it will help. It is difficult and I miss going to the gym sometimes, but I push myself and if I am too sick, I don't go.

I have these problems but I do not have a definitive diagnosis as to why this is happening. My doctors think it is all autoimmune - but my autoimmune studies are inconclusive - even though I have inflammatory arthritis and other AI symptoms (much like Lupus), my titers are negative.

I have learned to just "hang in there". Although at times, it just feels all to difficult to do so...

In other words, I understand how you feel.

Mere

Yes I get the drilling sensations, the scalded skin feeling, if you have had the skin biopsy and it came back positive,, then unfortunately you prob have SFN,, its a miserable thing,, and the cause of mine hasent been found,,, its tough and hard to live with,,

[malawigirl08]

Originally Posted by Feel the Burn

Yes I get the drilling sensations, the scalded skin feeling, if you have had the skin biopsy and it came back positive,, then unfortunately you prob have SFN,, its a miserable thing,, and the cause of mine hasent been found,,, its tough and hard to live with,,

Thanks guys, the only diagnostic method used on me was pin pricks on my legs and then cotton wool rubbed on my skin. I have all blood tests which have come back normal.this is all the tests I have had done in 10 years of symptoms and the past two my GP has said PN.
My pain consultant told me not to rule out MS and that is what is worrying me at the moment.

[Mere]

Yes, that is what the doctors did years ago, the pin pricks and cotton wool, and they thought I did have "neuropathy" because I could not feel the pricky thing from the knee down to the foot too well... It was after the gastroparesis hospitalization and numbness last year that I went to a new neurologist. At that time, I was having daily migraines and chest/heart pains as well. He decided to do the skin biopsy and also told me that I had dysautonomia and probable autonomic neuropathy. The skin test came back positive for moderate small fiber neuropathy. He did a whole lot of blood work and that all came back negative. So, idiopathic neuropathy... it sucks.

Mere

Originally Posted by malawigirl08

Thanks guys, the only diagnostic method used on me was pin pricks on my legs and then cotton wool rubbed on my skin. I have all blood tests which have come back normal.this is all the tests I have had done in 10 years of symptoms and the past two my GP has said PN.
My pain consultant told me not to rule out MS and that is what is worrying me at the moment.

[Mere]

Originally Posted by malawigirl08

Thanks guys, the only diagnostic method used on me was pin pricks on my legs and then cotton wool rubbed on my skin. I have all blood tests which have come back normal.this is all the tests I have had done in 10 years of symptoms and the past two my GP has said PN.
My pain consultant told me not to rule out MS and that is what is worrying me at the moment.

Has your GP considered an MRI of the brain? I think that they can see patchy spots if there is evidence of MS.

Mere

[Hermes]

Originally Posted by malawigirl08

Does everyone elses pain move around, one day my toes hurt, next it is a pneumatic drill in the ankles, then my skin feels as though it has been scalded and so on......I know the variety is interesting but is it normal?.. Or have I been diagnosed with SFPN and the diagnosise is wrong....again!

I have those same symptoms. Mine started 2 years ago with numbness in the thighs and then pain which spread into my calves and feet. This is backwards as most PN starts in the feet and works up. I'm now getting the "sunburn" feeling on my back as well as my my legs in addition to an invisible guy with an ice pick, or could be an pneumatic drill, following me around. Got to keep a sense of humor.

I went to Johns Hopkins in Jan '10 after my local doc said she didn't know what to do next (she had ordered MRIs of my spine and head and an EMG - both normal). All the tests that JH did also came back normal, blood work, another EMG, skin biopsy. So they call it idopathic polyneuropathy, which means they don't have any idea what is causing the symptoms. They did recommend some meds - Neurontin, Cymbalta, & Lyrica. My local doc had already tried Neurontin which did nothing. I'm currently on Cymbalta and Lyrica and while the pain got better for awhile either it meds stopped working or I would be in a whole lot more pain if I stopped taking them. Local doc referred me back to the JH pain treatment center. I have an appointment the end of Sept. I'm fortunate in that JH is only about a 2 hour drive for me.

[Feel the Burn]

Originally Posted by Hermes

I have those same symptoms. Mine started 2 years ago with numbness in the thighs and then pain which spread into my calves and feet. This is backwards as most PN starts in the feet and works up. I'm now getting the "sunburn" feeling on my back as well as my my legs in addition to an invisible guy with an ice pick, or could be an pneumatic drill, following me around. Got to keep a sense of humor.

I went to Johns Hopkins in Jan '10 after my local doc said she didn't know what to do next (she had ordered MRIs of my spine and head and an EMG - both normal). All the tests that JH did also came back normal, blood work, another EMG, skin biopsy. So they call it idopathic polyneuropathy, which means they don't have any idea what is causing the symptoms. They did recommend some meds - Neurontin, Cymbalta, & Lyrica. My local doc had already tried Neurontin which did nothing. I'm currently on Cymbalta and Lyrica and while the pain got better for awhile either it meds stopped working or I would be in a whole lot more pain if I stopped taking them. Local doc referred me back to the JH pain treatment center. I have an appointment the end of Sept. I'm fortunate in that JH is only about a 2 hour drive for me.

Hermes,, do you GI issues along with the PN,, ?