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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iceblue | @iceblue | Oct 12, 2019
In reply to @artscaping "@iceblue, Good afternoon, that sounds like pretty good decision making. I want to give you a..." + (show)
@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!!!

REPLY
4 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Oct 12, 2019
In reply to @jakedduck1 "@jimhd Hi Jim, May I inquire why you use a bi-pap vs a CPAP? My cousin..." + (show)
@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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Mentor
Jim, Volunteer Mentor | @jimhd | Oct 12, 2019
In reply to @lorirenee1 "@rwinney Rachel, For what it is worth, I have terrible neuropathy in my feet, and struggle..." + (show)
@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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1 reply
notborntoburn | @notborntoburn | Oct 12, 2019
In reply to @iceblue "A small update. I have taken 300 mg of Gabapentin for 2 nights in a row...." + (show)
@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

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burningfeetinphoenix | @burningfeetinphoenix | Oct 12, 2019
In reply to @iceblue "A small update. I have taken 300 mg of Gabapentin for 2 nights in a row...." + (show)
@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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1 reply
albiet | @albiet | Oct 12, 2019
In reply to @iceblue "A small update. I have taken 300 mg of Gabapentin for 2 nights in a row...." + (show)
@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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iceblue | @iceblue | Oct 12, 2019
In reply to @burningfeetinphoenix "@iceblue This is great news! I hope I fair as well as you...would be great to..." + (show)
@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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helennicola | @helennicola | Oct 12, 2019
In reply to @iceblue "A small update. I have taken 300 mg of Gabapentin for 2 nights in a row...." + (show)
@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

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lorirenee1 | @lorirenee1 | Oct 12, 2019
In reply to @jimhd "@lorirenee1 Marijuana is legal here in Oregon, but I don't know much about Kratom. Where do..." + (show)
@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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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 12, 2019
In reply to @lorirenee1 "@rwinney I get kratom at cbdkratomshops.com I also have been there, because the shop and I..." + (show)
@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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