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Small Fiber Neuropathy

My pain started in 8/06, primarily in my mid-spine and right back flank by my kidney.  Pain was stabbing and burning.  After an extensive workup, docs decided to try removing my gallbladder to see if that might be the cause.  I had that done 9/25/06.  Two days later, I developed a PE (blood clot in my right lung), was admitted to the hospital and put on blood thinners.  Five days later, they found I was bleeding internally from the floor of my liver bed.  They spent the next 24 hours reversing the anticoaggulation, and then went in abdominally to fix the bleed.  

Unfortunately, after all of this, the pain did not go away.  So after 17 total days in the hospital, I was placed on oxycontin and percocet, in the hope that the pain I was feeling was residual pain from the complications I had experienced.  

Eight months later, countless doctors, a trip to the Mayo Clinic, and I still did not have a diagnosis.  What I did have, was spreading of this pain.  

My symptoms increased over time, to include the mid-spine, right flank, right shoulder and elbow (tingling and numbness in pinky/ring finger of right hand), right chest, right breast, right abdomen, right pelvis, right hip, and lateral side of my right leg.  I also have random twitches anywhere from feet, hands, abdomen, arms, etc.  Most recently with the addition of right neck pain, and exclusively right-sided headaches.  

Pain tends to last for extended periods of time at high levels, and then may decline for a few days before starting to increase again.

Pain is also exacerbated by eating, which noone has been able to account for.

I have had four spinal injections, with odd results.  The last two, should have numbed me solidly from my chest down to my toes, but they did not even get above my hips, and the last one was very patchy, only numbing my left leg and a few toes.  Again, these were verified as being correctly placed via the Mayo when I went there, so something else had to be going on.

Eight months after taking oxycontin and percocet, it was recommended I wean off of these, in case they were causing the pain to continue via gastroparisis (slowing of the gut, more or less).  So, very stupidly, I weaned off in six days, which I don't recommend as it was terribly painful.

However, after a month, the pain still remained.

It was not until late August, that I was FINALLY diagnosed, via skin biopsy as having a condition known as Small Fiber Neuropathy.

During the past year, I have tried, oxycontin, percocet, cymbalta, neurontin, lyrica (neurontin/lyrica actually made the pain worse), prilosec, ultram, tramadol, lexapro, lyrica, ambien cr, effexor xr, 1000 mcg of B12, acupuncture, and a cervical spine chiropractor.

I have been told that unless a cause can be determined, treatment is symptomatic.  Unfortunately, we have yet to find anything that actually treats the symptoms.  In addition, my neurologist said that he ruled out more than 95% of the probable causes, including diabetes, glucose intolerance, aids, lupus, lyme, celiac, vitamin deficiency, etc.  He said that basically means, that there is a very remote chance we will find out not only why I have this, but how to treat the underlying cause.

I told one of my docs, that this basically feels like a heart attack on my right side, with stabbing, burning and crushing pain.  I at least know that I have this neuropathy and nerve damage, however, w/o a cause, and w/o any successful attempts at reducing the pain, I am unsure what to do next.  

I have continued to push my docs to keep searching and looking to see if there is anything else that they can find to determine a cause, however, very few people know much about this condition, at least in my area.  

So, that is about it.  I am looking for anyone who has had similar pain or seen someone w/ similar symptoms, or has any suggestions, I am open to them.  I know I have not suffered as long as some, but I am 31 and I have 3 young kids.  I want to find some way to get back to a sense of normalcy at at least do a better job of being there for my boys.
3 Responses
Avatar universal
In addition, I have also had autonomic testing which indicated decreased sweat output in my arm.  Gastric emptying was normal, but gastric accomodation was low.  I also had decreased esopogeal motility of unknown significance.  I have also tried the promotility agent reglan, but suffered extreme restlessness from it.  Otherwise, anything from MRI's from top to bottom, EKG, pH study, EMG, etc have all been normal.
Avatar universal
I had a gastroectomy on Friday, February 29, 2008. The reason, after having  severe and acute symptomatic food poisoning, the doctors conducted testing at the hospital where I had been admitted for the food poisoning, discovered a tumor in my stomach.

After surgery, I had pain, and was given hypermorphone by IV post surgery. I was discharged. I followed up with my doctor, who prescribed 10/650 mg percocet for the continued pain I was experiencing.

The pain continued, until August 17, 2008, when the pain abruptly intensified in my back right flank. I could not lie on my back without experiencing excruciating pain. I was caused to sleep in a chair, because I was unable to get comfortable lying down.

On the third day the pain was so intense, I made an appointment with an orthopedic surgeon. After examining me, he prescribed a MRI. I attempted to have the test at his office, but I was unable to lie on my back. The doctor arranged the MRI to be given at the hospital the following Wednesday,

That same day, a Friday, I could not tolerate the  pain any longer. At 8:00 p.m., I requested that my eldest son transport me to the hospital. I explained to the doctor that I was experiencing pain in my right flank. I further explained the pain was more severe and more intense then the pain I experienced from kidney stones,

The testing began. After 4 MRIs, 2 CAT scans, a pet scan a ultrasound test of my gall bladder, an ultrasound test of my kidneys, and ultrasound test of my liver, the doctors were perplexed. No health problems existed, yet I was in sere pain.

After 9 days I was released from the hospital, with an unknown cause of my pain. On the next day, a friend who is a physical telephoned me. he asked me how I was feeling. I explained to him that I was experiencing burning to my right flank, as though someone had sprayed me with hot sulfuric acid. I further stated that I numbness in the front right flank and the rear right flank, and was experiencing a stabbing in my rear right flank which radiated to the front right flank. That doctor stated, "that sounds like neuropathy, have you doctor prescribe neuroton and some pain medication. He said it would take ab bout a week for the neuroton to began to work.

I visited my doctor the same day. I explained to him what my doctor friend had said. My doctor immediately recognized that I did have neuropathy. He immediate wrote me a prescription of Neurton, 1800 mg a day. He also prescribed 25 mcg/hr Fentanyl patch. The patch would be changed every 72 hours.

I immediately had the prescription filled. Since then, the doctor has increased the patches to 75 mcg/hr. I have had very little pain since, except some breaktrough pain, which I have taken 10/650 mg of perocet.

I would like to find a cure for the pain. but I have learned that I may have to continue pain management for the rest of my life.

If you have any information that may help me, please contact me John at 713.876.1498.  
Avatar universal
I have had many simular symptoms as yourself. I just had the skin punch biopsy done, but my doctor said that the small fiber neuropathy was only in my feet. he tested 2 sites - top of foot and just above the ankle. Did both your sites test positive and which sites did he test? Also, as with Johnnybreakthrough, I too have been on fentanyl patches 150 mg every 2 days with dilauded 8 mg 4 - 8 hrs. This has helped the pain immensley. I hope you are able to find some relief from the pain. I am thankful I have although I wish I had more answers. I would really appreciate it if you have time, to reply as to the outcome of your skin punch biopsy.
Thank you!
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