Small Fiber Neuropathy?

Posted by elsa @elsa, Wed, Jan 23 5:07pm

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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@artscaping

@iceblue, Good afternoon, that sounds like pretty good decision making. I want to give you a "just in case" reminder. You say you cannot wait to be able to take Gabapentine during the day. That wasn't a good choice for me…I was a little fuzzy. So the alternative was to take 1200 mg at 8:30 p.m. Often that keeps the nerves under control into the morning or until noon. Don't give up, just be willing to experiment before you decline the medication that supports a good night's sleep. May you be free of pain and suffering. Chris

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A small update. I have taken 300 mg of Gabapentin for 2 nights in a row. I do not suffer from sleepiness with this drug at all. (e.g. last night I took it at 9:30 PM, finally went to bed at 2:00 AM.) Both nights I have slept like a baby – which is almost unheard of for me. Thankfully, this means no foot pain at all (and strangely – no getting up to go to the bathroom!!!). I have not felt this rested during the day for almost 2 decades (since menopause hit). I have also noticed that my feet feel different when I first get up in the morning. The initial pain and stiffness I've experienced for YEARS is almost absent (just a hint of stiffness but no pain). Yesterday I did not have to take any pain meds for my feet for the entire day!!! I will stay on this dosage for the next 2 weeks, and see my doctor at that point for a check up and a treatment plan going forward. Maybe I won't need to take this med during the day!!!

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@jakedduck1

@jimhd
Hi Jim,
May I inquire why you use a bi-pap vs a CPAP?

My cousin had a cpap then I got him a bipap. They said it would be easier for him to exhale. No difference when I tried it but I don't have Apnea. It was $1700. Was I ripped off?
Jake

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@jakedduck1

I have sleep apnea and used a CPAP for many years – 15+. It provides constant air pressure. A Bipap machine only provides pressure on inhale. The sleep doctor made the change a couple of years ago.

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@lorirenee1

@rwinney Rachel, For what it is worth, I have terrible neuropathy in my feet, and struggle with pain every single day. For me, the best thing for my pain is Kratom. Kratom is really an alternative treatment that most people do not seem to do. But I am very careful with it, and it totally takes pain away for about an hour and a half to two hours. Often, when it wears off, I find I am not in pain anymore. It works on Opiod receptors, but it is not an opiod. I swear by one company that ships it to me. It is reasonably priced. If you want to know more, just let me know. Lori Renee

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@lorirenee1 Marijuana is legal here in Oregon, but I don't know much about Kratom. Where do you get it?

Jim

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@iceblue

A small update. I have taken 300 mg of Gabapentin for 2 nights in a row. I do not suffer from sleepiness with this drug at all. (e.g. last night I took it at 9:30 PM, finally went to bed at 2:00 AM.) Both nights I have slept like a baby – which is almost unheard of for me. Thankfully, this means no foot pain at all (and strangely – no getting up to go to the bathroom!!!). I have not felt this rested during the day for almost 2 decades (since menopause hit). I have also noticed that my feet feel different when I first get up in the morning. The initial pain and stiffness I've experienced for YEARS is almost absent (just a hint of stiffness but no pain). Yesterday I did not have to take any pain meds for my feet for the entire day!!! I will stay on this dosage for the next 2 weeks, and see my doctor at that point for a check up and a treatment plan going forward. Maybe I won't need to take this med during the day!!!

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Oh dear comrade in the fight to seek freedom from the pain!
My prayers are going you

Liked by Leonard, rwinney, iceblue

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@iceblue

A small update. I have taken 300 mg of Gabapentin for 2 nights in a row. I do not suffer from sleepiness with this drug at all. (e.g. last night I took it at 9:30 PM, finally went to bed at 2:00 AM.) Both nights I have slept like a baby – which is almost unheard of for me. Thankfully, this means no foot pain at all (and strangely – no getting up to go to the bathroom!!!). I have not felt this rested during the day for almost 2 decades (since menopause hit). I have also noticed that my feet feel different when I first get up in the morning. The initial pain and stiffness I've experienced for YEARS is almost absent (just a hint of stiffness but no pain). Yesterday I did not have to take any pain meds for my feet for the entire day!!! I will stay on this dosage for the next 2 weeks, and see my doctor at that point for a check up and a treatment plan going forward. Maybe I won't need to take this med during the day!!!

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@iceblue This is great news! I hope I fair as well as you…would be great to sleep through the night! Pam

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@iceblue

A small update. I have taken 300 mg of Gabapentin for 2 nights in a row. I do not suffer from sleepiness with this drug at all. (e.g. last night I took it at 9:30 PM, finally went to bed at 2:00 AM.) Both nights I have slept like a baby – which is almost unheard of for me. Thankfully, this means no foot pain at all (and strangely – no getting up to go to the bathroom!!!). I have not felt this rested during the day for almost 2 decades (since menopause hit). I have also noticed that my feet feel different when I first get up in the morning. The initial pain and stiffness I've experienced for YEARS is almost absent (just a hint of stiffness but no pain). Yesterday I did not have to take any pain meds for my feet for the entire day!!! I will stay on this dosage for the next 2 weeks, and see my doctor at that point for a check up and a treatment plan going forward. Maybe I won't need to take this med during the day!!!

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@iceblue thats great.

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@burningfeetinphoenix

@iceblue This is great news! I hope I fair as well as you…would be great to sleep through the night! Pam

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Pam – it is positively BLISSFUL!!!!

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@iceblue

A small update. I have taken 300 mg of Gabapentin for 2 nights in a row. I do not suffer from sleepiness with this drug at all. (e.g. last night I took it at 9:30 PM, finally went to bed at 2:00 AM.) Both nights I have slept like a baby – which is almost unheard of for me. Thankfully, this means no foot pain at all (and strangely – no getting up to go to the bathroom!!!). I have not felt this rested during the day for almost 2 decades (since menopause hit). I have also noticed that my feet feel different when I first get up in the morning. The initial pain and stiffness I've experienced for YEARS is almost absent (just a hint of stiffness but no pain). Yesterday I did not have to take any pain meds for my feet for the entire day!!! I will stay on this dosage for the next 2 weeks, and see my doctor at that point for a check up and a treatment plan going forward. Maybe I won't need to take this med during the day!!!

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iceblue that is great news; happy to hear you are having success with the gabapentin and at a low dose. Please keep us updated. Helen

Liked by Leonard, rwinney, iceblue

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@jimhd

@lorirenee1 Marijuana is legal here in Oregon, but I don't know much about Kratom. Where do you get it?

Jim

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@rwinney I get kratom at cbdkratomshops.com I also have been there, because the shop and I come from Illinois, and are almost neighbors! Kratom is interesting stuff. Works quite differently than marijuana. Although I get very relaxed from it, I never feel high, as on marijuana. Whereas marijuana seems to distance the pain, the right strain of Kratom can actually take it away. Lori

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@lorirenee1

@rwinney I get kratom at cbdkratomshops.com I also have been there, because the shop and I come from Illinois, and are almost neighbors! Kratom is interesting stuff. Works quite differently than marijuana. Although I get very relaxed from it, I never feel high, as on marijuana. Whereas marijuana seems to distance the pain, the right strain of Kratom can actually take it away. Lori

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Hmm…that is interesting. I'm glad it helps you.

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@burningfeetinphoenix

@lorirenee1 Where do you get Kratom and what form – how do you take it? I ordered it once and it tasted so bad I sent it back. Can you put in a smoothie or something. Capsule form? Tea? In Florida they have Kratom bars where you can order up a drink that tastes good (probably has sugar!). My Sister goes there and gets it for back/leg pain (scoliosis). She swears by it. It is illegal in Arizona. Pam

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@burningfeetinphoenix I get kratom on line at cbdkratomshops.com You order MaeDoeng Kratom for pain. I like the green, and the white Mae Doeng for pain. I might have spelled this wrong. I buy it in powder form. I put about 3 teaspoons of it in about six ounces of water, and stir it up. It is pretty strong stuff, so I just gulp it down, and then take a hard candy to get rid of the taste. For me, the results are worth the bad taste. I literally gulp it down, very quickly, and done. I know people make tea from it, but I like to just chug it down. Oh, you cannot get it? I just read that. what a shame, because it works well for pain. Have your sis get you some of the real stuff at my website…. Lori Renee

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@steeldove I have researched Kratom extensively. Deaths from Kratom were mostly from kids being irresponsible with it, and having other chemicals in their system. I have learned to take the very least amount, to get the effect I need. I have never had an adverse reaction, and it helps immensely. There are as many positive reviews of Kratom as negative reviews, and I have such bad neuropathy that I am willing to try what works. Kratom works. I treat it with the respect it deserves. Lori Renee

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@lorirenee1 Thanks Lori! I am going to order some… Pam

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@steeldove

For those willing to wade through a medical article, here's one published in the latest edition of the Journal of the American Medical Association Neurology. https://neuropathycommons.org/sites/default/files/Oaklander_Nolano_SFN_2019.pdf It's a long article, but you may want to download it or print it to share with your doctor.

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@steeldove This article was the best one I've seen on SFN! Thanks for sharing…Pam

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@lorirenee1 One more thing. Are the capsules as effective as drinking it? Pam

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