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
Rachel, Volunteer Mentor | @rwinney | Oct 10, 2019
In reply to @wisfloj "Well said Rachel! Different personal chemistries, pain tolerance, mental and emotional stability etc. My biggest hurdle..." + (show)
@wisfloj

Well said Rachel! Different personal chemistries, pain tolerance, mental and emotional stability etc. My biggest hurdle is anxiety! I read up on what may lie ahead, and even entries here, then I obsess and panic and fear the worst, noting every subtle change with my body. EXHAUSTING!

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Thank you and I agree it is exhaustin.

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Mentor
Jim, Volunteer Mentor | @jimhd | Oct 10, 2019
In reply to @albiet "@jimhd what do you think of Mirtazapine. i have taken it the last 2 days at..." + (show)
@albiet

@jimhd
what do you think of Mirtazapine. i have taken it the last 2 days at just a 7.5 dose and it knocked me out. i also take 150 imipramine. how hard was it to switch to from your other antidepressant?

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@albiet

I didn't switch from another antidepressant when I started taking Mirtazapine. I could tell that I was going downhill, so I talked with my psychiatrist about it and he started me on Mirtazapine in addition to the Wellbutrin I had been taking for a number of years, ramping up to 45mg dose that stopped my downward slide.

Imipramine wasn't prescribed for depression, but as a pain reliever. I take 100mg, at least until my next appointment with the pain specialist.

Jim

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1 reply
burningfeetinphoenix | @burningfeetinphoenix | Oct 10, 2019
In reply to @wisfloj "Well said Rachel! Different personal chemistries, pain tolerance, mental and emotional stability etc. My biggest hurdle..." + (show)
@wisfloj

Well said Rachel! Different personal chemistries, pain tolerance, mental and emotional stability etc. My biggest hurdle is anxiety! I read up on what may lie ahead, and even entries here, then I obsess and panic and fear the worst, noting every subtle change with my body. EXHAUSTING!

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@wisfloj...Boy I can surely relate. It is exhausting!

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albiet | @albiet | Oct 10, 2019
In reply to @jimhd "@albiet I didn't switch from another antidepressant when I started taking Mirtazapine. I could tell that..." + (show)
@jimhd

@albiet

I didn't switch from another antidepressant when I started taking Mirtazapine. I could tell that I was going downhill, so I talked with my psychiatrist about it and he started me on Mirtazapine in addition to the Wellbutrin I had been taking for a number of years, ramping up to 45mg dose that stopped my downward slide.

Imipramine wasn't prescribed for depression, but as a pain reliever. I take 100mg, at least until my next appointment with the pain specialist.

Jim

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@jimhd first of all I hope things are going better . You are in my prayers.
Imipramine was something I was also given 25 years ago as I was in so much pain and going downhill. I won’t be here today without starting that med.
my problem is figureing docs and meds to take now. Over the last 2 years I had been on imipramine and also cymbalta. I starting getting hand shaking and was told by a dr I saw that took all the blood work that it could be the cymbalta with the imipramine so I stopped the Cymbalta in April . I was going to ask my new Pysch ( old one retired about going back on it) but went to first dr in 9 months, one who specialty is neuro with ms and also Pysch. He discussed trying pot or cbd. Then talked about gaba, lyrica and mirtazazine but saw that I might be heading down hill so he put me on mirtazane. I’m not sure I’m going to stay on it as I need to talk to my other dr about going back to cymbalta.
How do U get up in the morning? The 7.5 mg knocks me out.

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1 reply
lorirenee1 | @lorirenee1 | Oct 11, 2019
In reply to @rwinney "Great statement! I torment myself over this theory on a daily basis. I say there is..." + (show)
@rwinney

Great statement! I torment myself over this theory on a daily basis. I say there is a devil on one shoulder and an angel on the other.

The devil says...opiods are evil, harmful and can cause horrible long-term side effects. The angel says...but they give you relief from your pain when nothing else does, allow you to have minimal normalcy and be able to get through moments pain free to enjoy with your family.

It's constant torment of what's right and whats wrong. My daily pains and mental draining are also not healthy.

I will continue my search for alternatives that I can afford to get the most relief for my pain but in the meantime, I'm choosing my battles.

I would like to be proactive in having liver testing or anything that I can do to help myself from long term use.

My son works for Regeneron Pharmeceuticles and they continue to work on finding a non-opiod pain reliever.

Until then, I can only speak to what I need today and that is hydrocodone. I'm so sick of fighting with myself!

Rachel

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@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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3 replies
burningfeetinphoenix | @burningfeetinphoenix | Oct 11, 2019

@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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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 11, 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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Thank you for the information.

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Mentor
Jim, Volunteer Mentor | @jimhd | Oct 11, 2019
In reply to @albiet "@jimhd first of all I hope things are going better . You are in my prayers...." + (show)
@albiet

@jimhd first of all I hope things are going better . You are in my prayers.
Imipramine was something I was also given 25 years ago as I was in so much pain and going downhill. I won’t be here today without starting that med.
my problem is figureing docs and meds to take now. Over the last 2 years I had been on imipramine and also cymbalta. I starting getting hand shaking and was told by a dr I saw that took all the blood work that it could be the cymbalta with the imipramine so I stopped the Cymbalta in April . I was going to ask my new Pysch ( old one retired about going back on it) but went to first dr in 9 months, one who specialty is neuro with ms and also Pysch. He discussed trying pot or cbd. Then talked about gaba, lyrica and mirtazazine but saw that I might be heading down hill so he put me on mirtazane. I’m not sure I’m going to stay on it as I need to talk to my other dr about going back to cymbalta.
How do U get up in the morning? The 7.5 mg knocks me out.

Jump to this post

@albiet Mirtazapine has never caused drowsiness. Several meds I take list that as a side effect, but I pretty much take them at bedtime, so drowsiness is good.

I have sleep apnea and use a Bipap machine. I've never been a morning person and function better with at least 9 hours of sleep. But I don't have a problem with getting up early for an appointment or some other thing.

Perhaps your body will adjust to the Mirtazapine and you won't have problems in the morning.

Jim

REPLY
1 reply
steeldove | @steeldove | Oct 11, 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

Jump to this post

@lorirenee1 Mayo Clinic's take on Kratom: https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/kratom/art-20402171

REPLY
2 replies
Leonard | @jakedduck1 | Oct 11, 2019
In reply to @jimhd "@albiet Mirtazapine has never caused drowsiness. Several meds I take list that as a side effect,..." + (show)
@jimhd

@albiet Mirtazapine has never caused drowsiness. Several meds I take list that as a side effect, but I pretty much take them at bedtime, so drowsiness is good.

I have sleep apnea and use a Bipap machine. I've never been a morning person and function better with at least 9 hours of sleep. But I don't have a problem with getting up early for an appointment or some other thing.

Perhaps your body will adjust to the Mirtazapine and you won't have problems in the morning.

Jim

Jump to this post

@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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