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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@rwinney

Unfortunately, my reference to hydro is hydrocodone for pain relief. Would much rather be referring to water tho!! 😉

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I am trying to imagine being prescribed hydrocodone. I've never tried it, but have heard about it - and it's almost whispered when mentioned.

I moved to a new community 3 years ago, and the first doctor I saw here treated me like a drug addict when I ask for T3's. I left empty handed and humiliated. The second doctor (I am now his patient) was willing to give me 10. I treated them like gold - used them only when the pain was unbearable. Mostly I have been living on a steady diet of T1's. I'm sure my liver is not impressed.

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@iceblue

I am trying to imagine being prescribed hydrocodone. I've never tried it, but have heard about it - and it's almost whispered when mentioned.

I moved to a new community 3 years ago, and the first doctor I saw here treated me like a drug addict when I ask for T3's. I left empty handed and humiliated. The second doctor (I am now his patient) was willing to give me 10. I treated them like gold - used them only when the pain was unbearable. Mostly I have been living on a steady diet of T1's. I'm sure my liver is not impressed.

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Not an easy thing to obtain with rules/regs and opiod epidemic. My PCP prescribes 2 weeks at a time and knows me since a child. I'm very responsible and they were last resort for my pain. Forever trying to find sufficient alternate pain relief to be able to get off them.

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@jakedduck1

@jeffrapp
I thought I read that somewhere, I think on Harvard News.
My dad started taking it and had blood pressure issues but he was a C-5 quad.
Jake

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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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@iceblue

Your warning is a very important one. I've done a ton of research on Gaba and based on what I've seen, no one should ever stop taking it cold turkey - even if they do not have a seizure disorder.

The first medication my Neurologist suggested was Effexor and I IMMEDIATELY declined. I was on it a decade ago to treat depression, and the side effects were horrendous (including those during the weaning process). Many people say the same things about Gaba - so I knew it could be bad before I started to take it.

Truth be told - there do not seem to be a lot of pain management options for nerve pain, and quite frankly I am tired of being in pain so I'm willing to roll the dice on this one. I am watching carefully for side effects and monitoring how well it manages the pain. Eleven days in and so far so good - but my doctor started me off on 100 mg for 7 days; 200 mg for 7 days, then 300 mg for 14 days. I take it only at night and need to go back and see him before the end of the month. I have been sleeping through the night pain free (yipppeee!) and cannot wait to be able to take it during the day.

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@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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@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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@iceblue @artscaping Since 2016 when my problems with SFN began, I've taken various doses of Gabapentin, at one time as high as 2,700 mg/day. I've never found that it provided any pain relief, but it impacted the brain and made me stupid, a side effect that I found unacceptable. However, taking 800 mg of Gabapentin in the evening does help me sleep. So, iceblue,experiment and find what works for you.

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a real important question for me. i went to a neurologist who is more ms to rule that out. he did and said the crap that i have is most likley SFN. he said so it can react in different ways to different people. my question revolves around meds. for almost 30 years, ive been on imipramine which helps with pain and my head. i have also taken cymbalta at times with it. after telling him my current issues which include the lots of tingling , buzzing and recent insomnia. he mentioned the usual gaba and lyrcia. but seeing im not sleeping and worried about the other 2 he gave me a prescription for mirtazapine. im nervous about taking it. he said it would help with sleep and a little pain. has anyone ever taking this med? im nervous about taking it. please any thoughts

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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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@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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@helennicola What dosage of the drug? So you take one at night instead of one 3X/day so 1/3 total daily dose? Asking because I see Neurologist first time this Friday. Am not on any meds right now. Just recently diagnosed. Thx Pam

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@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

how long have you been on gabapentin? i heard that you build up resistence to it and need to take more. have you seen that?

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@steeldove

@iceblue @artscaping Since 2016 when my problems with SFN began, I've taken various doses of Gabapentin, at one time as high as 2,700 mg/day. I've never found that it provided any pain relief, but it impacted the brain and made me stupid, a side effect that I found unacceptable. However, taking 800 mg of Gabapentin in the evening does help me sleep. So, iceblue,experiment and find what works for you.

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I am all about experimentation đŸ™‚ And I do want to minimize the amount of meds I take because if I need to increase it over the years - I want room to grow.

I know it's REALLY early in my treatment, but I have found my sleep cycles to be really varied. I'm not sure if it matters that I've suffered from insomnia my entire life? Last night I took 200 mg of Gaba at 10:30, went to bed at midnight, and was up at 7:30 this morning. I slept well, and aside from a slight headache, felt 100% clear-headed when I got up. I have the same varied experience with pain since starting the Gaba. Some nights I experience zero pain, and some nights I've felt pain between 4 - 6 AM (although not enough to prevent me from going back to sleep). A couple of times I haven't had to take pain meds until well into the day. Other days, my feet are on fire when I wake up and hurt all day (which was the case yesterday). I have already taken a couple of T1's today, and am watching the clock to see when I can take another dose...hence my desire to take Gaba during the day.

Am I dreaming that I will be able to take meds that will prevent the majority of my pain?

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