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

Interested in more discussions like this? Go to the Neuropathy Support Group.

Rachel, Volunteer Mentor | @rwinney | Oct 14, 2019

In reply to @lisalucier "In addition to the Mayo Clinic article @steeldove posted on Kratom, I'd like to offer this..." + (show)

Too risky for me.

gashmell | @gashmell | Feb 3, 2020

In reply to @rwinney "I combine those two meds with 5mg hydro/325 acetaminophen and 1000 mg intravenous lidocaine infusion." + (show)

Hi! I’m from Wisconsin, trying to figure out how/where to get lidocaine infusions for CRPS, RA, Fibro etc. Does your pcp prescribe your lidocaine infusions? Do you have them at the hospital? So many questions! Lol.

Rachel, Volunteer Mentor | @rwinney | Feb 3, 2020

In reply to @gashmell "Hi! I’m from Wisconsin, trying to figure out how/where to get lidocaine infusions for CRPS, RA,..." + (show)

Hello and always happy to help. Great questions. I have Small Fiber poly neuropathy and my Neurologist prescribed lidocaine infusions for pain. They are given in the Apherisis unit of a hospital. Usually a university hospital or big city hospital.

gashmell | @gashmell | Feb 3, 2020

Thank you! The difficult part for me won’t be getting it prescribed I don’t think, but having to drive so far from home for treatments and having no one to help me with travel and childcare if I need to be gone overnight. I’m hoping to find something closer to home possibly Wausau or Green Bay Area. I can’t figure out how to find clinics that actually DO the infusion so I can get a referral for it. Is there a resource available for that? Thank you!

Rachel, Volunteer Mentor | @rwinney | Feb 3, 2020

In reply to @gashmell "Thank you! The difficult part for me won’t be getting it prescribed I don’t think, but..." + (show)

Well, perhaps googling "closest Apheresis unit" or having a sit down visit with your Neurologist. Dr should be in your best interest and do the work for you.

total99 | @total99 | Jan 15, 2022

Pain management program at Mayo? Rochester? Jacksonville? How was it?

John, Volunteer Mentor | @johnbishop | Jan 16, 2022

In reply to @total99 "Pain management program at Mayo? Rochester? Jacksonville? How was it?" + (show)

@total99 there is a discusson on the Mayo Pain Rehabilitation Program that you might find helpful.

Mayo Pain Rehabilitation Program: What's your experience?
-- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

The Pain Rehabilitation Center (PRC) at Mayo Clinic's campuses in Arizona, Florida and Minnesota provides a three-week program for adults. Read more here: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

pamj | @pamj | Oct 22, 2022

In reply to @somisgirl "Has anyone been diagnosed with idiopathic small fiber neuropathy? Not caused by diabetes" + (show)

Yes. I was diagnosed last month. Active with Pickleball, Hiking, etc. Not sure what future will bring and am very scared.

John, Volunteer Mentor | @johnbishop | Oct 22, 2022

In reply to @pamj "Yes. I was diagnosed last month. Active with Pickleball, Hiking, etc. Not sure what future will..." + (show)

Welcome @pamj, You are definitely not alone. I think all of us had the same feeling of not knowing what the future will bring and it can be scary. My best advice is to learn as much as you can about your condition and what treatments are available. There are a lot of discussions here on Connect to learn from the experience of others. Here is the link to the list of discussions in the Neuropathy group -- https://connect.mayoclinic.org/group/neuropathy/

What is your most bothersome symptom? Have you started any treatment?

pamj | @pamj | Oct 24, 2022

I sometimes have burning on the bottoms of feet and tingling in ankle area. I also sometimes get the pins and needles throughout my body. Fortunately, the pins and needles do not last very long. I sometimes will go 10 or more days without much symptoms or pain. During that time I was walking, playing pickleball, etc. Then I may have 1-4 days of pain when walking. Very grateful that I do not have pain every day, but seems that something must be a trigger. I have idiopathic diagnosis. Frustrating. I am currently on a 400 mg of Gabapentin daily. Was also wondering how quickly the progression was for most with SFN.