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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Leonard | @jakedduck1 | Oct 7, 2019

In reply to @albiet "how hard was it to come off each of these meds?" + (show)

NEVER stop any Anticonvulsant which is what Gabapentin and Lyrica are if you have a seizure disorder. Could be deadly. Don’t think that is an exaggeration. Before I knew better I quit and lost 15 years of my life, 8 months in a coma and nearly my life. Never stop any medication on your own.
Jake

Jim, Volunteer Mentor | @jimhd | Oct 7, 2019

In reply to @jakedduck1 "NEVER stop any Anticonvulsant which is what Gabapentin and Lyrica are if you have a seizure..." + (show)

@jakedduck1

I'm glad that I hadn't made it up to full dose of Lyrica when I had to stop it. I stopped it immediately, but in the hospital. Many, if not most, meds need supervision or some kind or protocol to taper off them. Some are very difficult to stop. I think that many have said here in Connect that Effexor is a particularly tough one.

Jim

jager5210 | @jager5210 | Oct 7, 2019

In reply to @jakedduck1 "@jager5210 So are you healed now? Symptom free? Jake" + (show)

This is my 3rd try on celery juicing. Too much gut distress 1st 2 times. This time I'm 2 weeks in & it's much better but I'm also doing the cleanse & the detox smoothie. Symptoms wax & wane but they are not as intense as when I started. I'm watching my diet carefully. I've got nuts, seeds, fish and cassava on hold at the moment.

resawaller | @resawaller | Oct 7, 2019

In reply to @chace61 "I have gone cold turkey on Gabapentin and I am using CBD creams.... I still hurt..." + (show)

I understand ! I wake up in pain and go to sleep in pain! I take lyrica and hydros 10 and still hurt like he'll. I'll pray for you,your not alone! God bless you

Jim, Volunteer Mentor | @jimhd | Oct 7, 2019

In reply to @albiet "how hard was it to come off each of these meds?" + (show)

Well, I stopped Lyrica in the hospital as soon as they figured out that it was causing several symptoms. The others I did a gradual tapering down, and I was probably tapering up on the next one on the neurologist's list at the same time.

Jim

Rachel, Volunteer Mentor | @rwinney | Oct 7, 2019

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

Lyrica CR 165mg has helped some parts of my neuropathy. Enough to stay on as part of my combined treatment.
Cymbalta, I honestly don't even know. Don't think it's done a dang thing for pain but do think it's helped me to not be such a worry wart... settles my anxiety.

resawaller | @resawaller | Oct 7, 2019

In reply to @jakedduck1 "@albiet Yes, I have taken all three. None helped my pain although I was primarily taking..." + (show)

I take lyrica 3 times a day,and it helps a little but pain comes right back ! Is their any end to this pain from hell?

Rachel, Volunteer Mentor | @rwinney | Oct 7, 2019

In reply to @rwinney "Lyrica CR 165mg has helped some parts of my neuropathy. Enough to stay on as part..." + (show)

I combine those two meds with 5mg hydro/325 acetaminophen and 1000 mg intravenous lidocaine infusion.

Rachel, Volunteer Mentor | @rwinney | Oct 7, 2019

In reply to @jakedduck1 "NEVER stop any Anticonvulsant which is what Gabapentin and Lyrica are if you have a seizure..." + (show)

Jake, I'm very sorry to hear about this time in your life.

Jim, Volunteer Mentor | @jimhd | Oct 7, 2019

In reply to @chace61 "I have gone cold turkey on Gabapentin and I am using CBD creams.... I still hurt..." + (show)

@chase61

I started taking Imipramine around six weeks ago, and it's been making a difference. Unfortunately, the interactions with other meds I take has moved my blood pressure from my life long reading of 120/60 to 160/100. I'm trying to taper off the other meds one at a time to try to find the culprit. So far, I'm off morphine sulfate contin and last night I started going off Mirtazapine, which is an add on antidepressant. Since Imipramine is also an antidepressant, perhaps I won't need it if I can keep taking Imipramine. I finished getting off the ms contin 4 days ago, but so far no change in my BP. For me, taking meds has been an ordeal of trial and error.

Jim