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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Mentor
Jim, Volunteer Mentor | @jimhd | Oct 8, 2019
In reply to @jeffrapp "I think you are referring to something called the Serotonin Syndrome, which is a rare but..." + (show)
@jeffrapp

I think you are referring to something called the Serotonin Syndrome, which is a rare but serious drug reaction that can cause, among many other things, wild fluctuations in blood pressure. This can occur when taking 2 different anti-depressants in fairly large doses, for example.
A mild elevation of BP from a previous norm as described in the post, is not likely to be serotonin syndrome, which is an emergency condition. BP can vary from day to day, and even hour to hour.
The meds the poster is taking are not likely to cause serotonin syndrome.
I think this forum is excellent for disseminating suggestions for alternative treatments, tricks for getting more comfortable, support and encouragement, etc. It is not the place for laymen to give medical advice, which is the job of professionals. I understand there is a lot of dissatisfaction with the standard treatment of PN, because the standard treatment frankly sucks. Nevertheless, fooling around with medicine can be counter productive, and even dangerous.
Readers should always consult with their providers when adding or stopping any drug.
No offence intended.

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@jeffrapp No offense taken.

As far as seretonin syndrome is concerned, I don't think that I take high enough doses of the meds that might cause it, but it's in the back of my mind.

Thanks.

Jim

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1 reply
albiet | @albiet | Oct 8, 2019
In reply to @jimhd "@jeffrapp No offense taken. As far as seretonin syndrome is concerned, I don't think that I..." + (show)
@jimhd

@jeffrapp No offense taken.

As far as seretonin syndrome is concerned, I don't think that I take high enough doses of the meds that might cause it, but it's in the back of my mind.

Thanks.

Jim

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jim,
i missed your comments on what you take that potentally can cause seretonin syndrome. i have been on immipramine and cymbalta together many times over the last 25 years. maybe ive been lucky but have not had those issues. im about to try mirtazapine with the immipramine. not sure if there is any seretonin worries there but if you know, please lmk.

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1 reply
albiet | @albiet | Oct 8, 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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chris, how long have you been on gabapentine? have you been at a stable amount for a while? have you ever tried lyrica?

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iceblue | @iceblue | Oct 8, 2019
In reply to @burningfeetinphoenix "@iceblue... What is a T1? Pam" + (show)
@burningfeetinphoenix

@iceblue... What is a T1? Pam

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Tylenol 1 - sold over the counter. They contain a small amount of codeine.

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1 reply
iceblue | @iceblue | Oct 8, 2019
In reply to @helennicola "@iceblue, I agree with Chris, I was originally prescribed gabapentin 3xday but decided to try it..." + (show)
@helennicola

@iceblue, I agree with Chris, I was originally prescribed gabapentin 3xday but decided to try it 1xday at night and it does put me to sleep and is good for about 18 hrs. but I can go 24 hrs. without it. I do take it 2 hrs. before bedtime, it takes that amount of time to kick in. You can always increase the dosage if necessary, Helen

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Helen - Good to know! What dosage of Gabapentin would you take to make it effective when taking it only once a day? I'm assuming it's more than the 200 mg I'm taking now - because that isn't cutting it...

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1 reply
burningfeetinphoenix | @burningfeetinphoenix | Oct 8, 2019

@iceblue Does Tylenol work for neuropathy? Perhaps I should take some? Pam

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1 reply
iceblue | @iceblue | Oct 8, 2019
In reply to @burningfeetinphoenix "@iceblue Does Tylenol work for neuropathy? Perhaps I should take some? Pam" + (show)
@burningfeetinphoenix

@iceblue Does Tylenol work for neuropathy? Perhaps I should take some? Pam

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The T1's have definitely worked for me, but when I'm having a bad day I'm taking 2 every 4 hours. As I said before, I am sure my liver is not pleased, which is why I am looking for alternative pain meds.

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helennicola | @helennicola | Oct 8, 2019
In reply to @iceblue "Helen - Good to know! What dosage of Gabapentin would you take to make it effective..." + (show)
@iceblue

Helen - Good to know! What dosage of Gabapentin would you take to make it effective when taking it only once a day? I'm assuming it's more than the 200 mg I'm taking now - because that isn't cutting it...

Jump to this post

I take 300mg, started at 100, increased twice within 18 months, I do think the RAla helps keep the pain in check during the day, I noticed a difference when I stopped taking it plus I take some other supplements which I don’t know if they just make expensive urine or have a placebo effect but they can’t hurt!

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