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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chace61 | @chace61 | Oct 7, 2019

I was taking 900MG AM 900 PM and 900 bedtime.... it did not help much only on it for pain

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1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Oct 7, 2019
In reply to @rwinney "Lyrica CR 165mg has helped some parts of my neuropathy. Enough to stay on as part..." + (show)
@rwinney

Lyrica CR 165mg has helped some parts of my neuropathy. Enough to stay on as part of my combined treatment.
Cymbalta, I honestly don't even know. Don't think it's done a dang thing for pain but do think it's helped me to not be such a worry wart... settles my anxiety.

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@rwinney

For anxiety I started taking Clonazepam 13 years ago, @1mg, with the option of taking a second one as needed. I tried to taper off it a couple of years ago, but just dropping down to .75mg was intolerable. I couldn't sleep. I take it in part for my wife's sake, because it stops me from acting out my dreams by kicking. She thinks that I take more meds than I should, but no complaint about Clonazepam.

Jim

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2 replies
waynedemo | @waynedemo | Oct 7, 2019
In reply to @albiet "has anyone here used lyrica, cymblata or gaba for pain. would like to hear if they..." + (show)
@albiet

has anyone here used lyrica, cymblata or gaba for pain. would like to hear if they helped sfn or made things worse.

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No help!

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Leonard | @jakedduck1 | Oct 7, 2019
In reply to @jimhd "@chase61 I started taking Imipramine around six weeks ago, and it's been making a difference. Unfortunately,..." + (show)
@jimhd

@chase61

I started taking Imipramine around six weeks ago, and it's been making a difference. Unfortunately, the interactions with other meds I take has moved my blood pressure from my life long reading of 120/60 to 160/100. I'm trying to taper off the other meds one at a time to try to find the culprit. So far, I'm off morphine sulfate contin and last night I started going off Mirtazapine, which is an add on antidepressant. Since Imipramine is also an antidepressant, perhaps I won't need it if I can keep taking Imipramine. I finished getting off the ms contin 4 days ago, but so far no change in my BP. For me, taking meds has been an ordeal of trial and error.

Jim

Jump to this post

@jimhd
My uneducated opinion is not to expect a decrease in blood pressure as long as your taking a
Tricyclic antidepressant.
Try stopping your Imipramine. Bet ya a nickel your pressure goes down. When did it start to increase?
Jake

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 7, 2019
In reply to @jimhd "@rwinney For anxiety I started taking Clonazepam 13 years ago, @1mg, with the option of taking..." + (show)
@jimhd

@rwinney

For anxiety I started taking Clonazepam 13 years ago, @1mg, with the option of taking a second one as needed. I tried to taper off it a couple of years ago, but just dropping down to .75mg was intolerable. I couldn't sleep. I take it in part for my wife's sake, because it stops me from acting out my dreams by kicking. She thinks that I take more meds than I should, but no complaint about Clonazepam.

Jim

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Yeah my sleeping has no pattern whatsoever, sporadic. Been thinking about changing Cymbalta to AM. It's a rotten experience.

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albiet | @albiet | Oct 7, 2019
In reply to @jimhd "@chase61 I started taking Imipramine around six weeks ago, and it's been making a difference. Unfortunately,..." + (show)
@jimhd

@chase61

I started taking Imipramine around six weeks ago, and it's been making a difference. Unfortunately, the interactions with other meds I take has moved my blood pressure from my life long reading of 120/60 to 160/100. I'm trying to taper off the other meds one at a time to try to find the culprit. So far, I'm off morphine sulfate contin and last night I started going off Mirtazapine, which is an add on antidepressant. Since Imipramine is also an antidepressant, perhaps I won't need it if I can keep taking Imipramine. I finished getting off the ms contin 4 days ago, but so far no change in my BP. For me, taking meds has been an ordeal of trial and error.

Jim

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I have taken imipramine on and off over the last 30years. Early in my life made a huge difference. Have taken it with cymbalta low dose bu came off the cymbalta 6 months ago. May try to add on again.

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albiet | @albiet | Oct 7, 2019
In reply to @chace61 "I was taking 900MG AM 900 PM and 900 bedtime.... it did not help much only..." + (show)
@chace61

I was taking 900MG AM 900 PM and 900 bedtime.... it did not help much only on it for pain

Jump to this post

Chase , how long did it take to come off it for uiu

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jeffrapp | @jeffrapp | Oct 7, 2019
In reply to @jakedduck1 "@jimhd My uneducated opinion is not to expect a decrease in blood pressure as long as..." + (show)
@jakedduck1

@jimhd
My uneducated opinion is not to expect a decrease in blood pressure as long as your taking a
Tricyclic antidepressant.
Try stopping your Imipramine. Bet ya a nickel your pressure goes down. When did it start to increase?
Jake

Jump to this post

Hi Jake
What has formed your "uneducated opinion" about hypertension and TCA's?
I am not aware of any issues with BP and TCA's, unless the patient is also taking Clonidine (not clonezepam or Klonopin)

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1 reply
chace61 | @chace61 | Oct 7, 2019

I stopped last Friday... trying CBD creams on legs... I was taking 900 am 900 pm 900 bedtime.. still hurting.. just tire hell... I am using CBD creams

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Leonard | @jakedduck1 | Oct 7, 2019
In reply to @jimhd "@rwinney For anxiety I started taking Clonazepam 13 years ago, @1mg, with the option of taking..." + (show)
@jimhd

@rwinney

For anxiety I started taking Clonazepam 13 years ago, @1mg, with the option of taking a second one as needed. I tried to taper off it a couple of years ago, but just dropping down to .75mg was intolerable. I couldn't sleep. I take it in part for my wife's sake, because it stops me from acting out my dreams by kicking. She thinks that I take more meds than I should, but no complaint about Clonazepam.

Jim

Jump to this post

@jimhd
No complaints? try stopping it. Cutting it by 25% is a lot especially since you have taken it so long. If I was your wife I’d kick you back, good and hard. A little unconventional perhaps but it just might work.
Klonopin isn’t easy to get off of. I took 18mg but had an uneventful taper but it took a long time but I didn’t take it for years.
Jake

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