1. < Neuropathy

Small Fiber Neuropathy?

Posted by elsa @elsa, Jan 23, 2019

Hello. I'm a 64 year old woman who has a complex medical history. I have relapsing-remitting MS (diagnosed in 2006, well-controlled; on Copaxone). I also ruptured my L5-S6 disc in 2009, subsequently had a microdiscectomy during which the surgeon tore the dura. Since the surgery, I developed chronic pain which worsened with time. Last March I graduated from Mayo's 3-week pain management program. Since then I no longer take any opiates or benzodiazepines which has been a huge step for the better.
That said, in the past few months my pain has spread and changed in nature. I now have bilateral burning sensations in my buttocks and hamstrings. This new pain seems to be burning in the outer part of my skin. It burns whenever I'm sitting or lying down. Any pressure at all on these areas causes really awful burning sensations. I am wondering if I have developed small fiber neuropathy.
Questions: 1) Does my description of this new pressure-sensitive, burning pain sound like it's SFN? 2) I notice that there is some discussion about immunity and SFN. Could my having MS (an autoimmune disease) somehow be causal in the development of SFN? 3) Can anyone recommend a doctor at Mayo in Rochester who could examine me and do the proper tests to hopefully diagnose what's going on?
Thank you much!!
--Elsa

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jager5210 | @jager5210 | Oct 7, 2019

Joining does require you give some information, real or bogus, and they will send you emails from which you can always unsubscribe. There is no cost. Or, you can google Anthony Williams on utube,instagram or facebook to see what he's all about. Desperate times call for desperate measures.

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1 reply
albiet | @albiet | Oct 7, 2019
In reply to @iceblue "For what it's worth, aside from burning feet, pins/needles, and occasional zaps - the intermittent sensations..." + (show)
@iceblue

For what it's worth, aside from burning feet, pins/needles, and occasional zaps - the intermittent sensations I've experienced that my neurologist confirmed are due to SFN include:

* Sense that the skin on the ball of my feet had thickened (calluses) - although when I felt the area with my hand it clearly has not.
* A feeling in my calves as if the muscles were popping like popcorn. Not painful - just super irritating.

I'm still waiting for the Gabapentin to let me know whether the aching/stiffness in my feet and ankles is related to SFN or if it's something else. I can say that a little more than one week in, and just 2 days on 200 mg (taking it at night only) the aching and stiffness does seem to be reduced - but I will take a wait and see approach to see if it's the Gabapentin or short term coincidence.

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Are nervous about gads side effects or coming off it

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1 reply
Leonard | @jakedduck1 | Oct 7, 2019
In reply to @jager5210 "Joining does require you give some information, real or bogus, and they will send you emails..." + (show)
@jager5210

Joining does require you give some information, real or bogus, and they will send you emails from which you can always unsubscribe. There is no cost. Or, you can google Anthony Williams on utube,instagram or facebook to see what he's all about. Desperate times call for desperate measures.

Jump to this post

@jager5210
So are you healed now? Symptom free?
Jake

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1 reply
albiet | @albiet | Oct 7, 2019

has anyone here used lyrica, cymblata or gaba for pain. would like to hear if they helped sfn or made things worse.

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4 replies
Leonard | @jakedduck1 | Oct 7, 2019
In reply to @albiet "Are nervous about gads side effects or coming off it" + (show)
@albiet

Are nervous about gads side effects or coming off it

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@albiet
Is it Gabapentin your concerned about coming off of?
Jake

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Mentor
Jim, Volunteer Mentor | @jimhd | Oct 7, 2019
In reply to @albiet "has anyone here used lyrica, cymblata or gaba for pain. would like to hear if they..." + (show)
@albiet

has anyone here used lyrica, cymblata or gaba for pain. would like to hear if they helped sfn or made things worse.

Jump to this post

@albiet

I've tried them all. Lyrica was helping the first few weeks but side effects landed me in the hospital for a couple of days. Some of my siblings have told me that Gabapentin has helped them. I did take Cymbalta for a while, but I was trying other things around the same time, so I never figured out if it did any good.

Jim

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1 reply
albiet | @albiet | Oct 7, 2019
In reply to @jimhd "@albiet I've tried them all. Lyrica was helping the first few weeks but side effects landed..." + (show)
@jimhd

@albiet

I've tried them all. Lyrica was helping the first few weeks but side effects landed me in the hospital for a couple of days. Some of my siblings have told me that Gabapentin has helped them. I did take Cymbalta for a while, but I was trying other things around the same time, so I never figured out if it did any good.

Jim

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how hard was it to come off each of these meds?

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2 replies
chace61 | @chace61 | Oct 7, 2019

I have gone cold turkey on Gabapentin and I am using CBD creams.... I still hurt like HELL... This is real depressing to be in REAL Pain....

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3 replies
albiet | @albiet | Oct 7, 2019
In reply to @chace61 "I have gone cold turkey on Gabapentin and I am using CBD creams.... I still hurt..." + (show)
@chace61

I have gone cold turkey on Gabapentin and I am using CBD creams.... I still hurt like HELL... This is real depressing to be in REAL Pain....

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were you in more pain now than before starting the gaba? how long were u on it and at what doses

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Leonard | @jakedduck1 | Oct 7, 2019
In reply to @albiet "has anyone here used lyrica, cymblata or gaba for pain. would like to hear if they..." + (show)
@albiet

has anyone here used lyrica, cymblata or gaba for pain. would like to hear if they helped sfn or made things worse.

Jump to this post

@albiet
Yes, I have taken all three. None helped my pain although I was primarily taking Gabapentin & Lyrica for Seizures and was on the max dose of Neurontin (3,600mg) Neither worked for my seizures or Neuropathy. I read only about 15% of Neuropathy patients get relief from it. I also took Cymbalta for a short time which didn’t help either.
Jake

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