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

Interested in more discussions like this? Go to the Neuropathy Support Group.

albiet | @albiet | Oct 9, 2019

@jimhd are you saying that you take the morphine sulfate contin as a separte pill or its included in one the the medictions you take. like me are you taking immipramine and mitazapine. how much of each do you take?im just starting mitazapine but worried its not to help pain and would like to get back to cymbalta since i hate taking new things

Chris Trout, Volunteer Mentor | @artscaping | Oct 9, 2019

In reply to @albiet "does anyone use cymbata?" + (show)

@albiet, In reply to your question about Cymbalta (Duloxetine): I take 60 mg of Cymbalta every morning. This, for me, is an anti-anxiety medication. Without this help, I would let the anxiety from the pain or the anticipation of it create more pain which created more anxiety, etc. You have to get off that rollercoaster. I thought I had foggy brain and even cognitive retention issues. It was all anxiety. May you find the right answers to relieve your suffering. Chris

Jim, Volunteer Mentor | @jimhd | Oct 9, 2019

In reply to @albiet "@jimhd are you saying that you take the morphine sulfate contin as a separte pill or..." + (show)

@albiet

Before I got my spinal cord stimulator I took 30mg of ms contin 3x a day. I was able to cut that in half, and I have been taking 15mg 3x. I actually have only been taking it once or twice a day, but the RX is tid. It was prescribed by my PCP.

A few months ago the clinic my doctor is with mandated a limit of 100mg of narcotics per day, so he has done an about face on what he says about opioids. He prescribed it for my neuropathy pain, and didn't give me the lecture that he now does, which is, "opioids are not pain relievers. They only alter how your brain perceives pain." That may be the party line because of the "epidemic", but it's not what I was told five years ago. But don't get me started on that.

Bottom line is that he told me that he would not raise my current dosage.

All I know is that it really DOES help my pain, whatever the doctors say.

Imipramine was started around two months ago, prescribed by my pain specialist for my neuropathy pain, and I have stepped up to 100mg. Technically it's an antidepressant and is used to stop bed wetting in children, but it has lowered my pain level from 6-8 to 2-4, as long as I keep taking the ms contin.

Mirtazapine was prescribed by my psychiatrist as an add on for depression ( my primary antidepressant has been Wellbutrin for 14 years). I take 45mg of Mirtazapine.

Trying to find the right combination of meds has been an ongoing challenge of trial and error.

Jim

iceblue | @iceblue | Oct 10, 2019

In reply to @jimhd "@albiet Before I got my spinal cord stimulator I took 30mg of ms contin 3x a..." + (show)

"...opioids are not pain relievers. They only alter how your brain perceives pain."

*sigh*

What is the difference when in reality it is the brain that perceives ALL pain?

When I take a medication and my brain perceives less pain - I call that pain relief...

Rachel, Volunteer Mentor | @rwinney | Oct 10, 2019

In reply to @iceblue ""...opioids are not pain relievers. They only alter how your brain perceives pain." *sigh* What is..." + (show)

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

albiet | @albiet | Oct 10, 2019

In reply to @jimhd "@albiet Before I got my spinal cord stimulator I took 30mg of ms contin 3x a..." + (show)

@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?

iceblue | @iceblue | Oct 10, 2019

In reply to @rwinney "Great statement! I torment myself over this theory on a daily basis. I say there is..." + (show)

OK - this is a great segue to questions that have been weighing on my mind:

* Is addiction and/or drug dependence a 'given' with SFN? (I'm talking about opioids, anti-depressants, and/or anticonvulsants.)
* Am I destined to spend the rest of my life exploring various pain medications, anti-depressants, and anticonvulsants for the perfect cocktail that will relieve my pain?
* I am not even remotely depressed right now. Is it a given that I will eventually suffer from depression because of the pain?

jeffrapp | @jeffrapp | Oct 10, 2019

In reply to @iceblue "OK - this is a great segue to questions that have been weighing on my mind:..." + (show)

Hi @iceblue
I'll answer your questions in order
1) Addiction and SFN really have nothing to due with each other. However, if you take drugs that have addiction potential like opioids (e.g. vicodin, MS Contin, percocet, etc.) then there is a risk of addiction.
2) Depends on how much longer you live. Since the treatment of SFN is not great with the current meds, you very well may spend years looking for the "perfect cocktail", and you likely will never find it, until new drugs come around
3) It is certainly not a given that you will become depressed, especially since you sound like you are doing well now.
Good luck!

Rachel, Volunteer Mentor | @rwinney | Oct 10, 2019

In reply to @iceblue "OK - this is a great segue to questions that have been weighing on my mind:..." + (show)

The answer is NO, not necessarily to all 3 questions. Please understand that yes, at this time there are no cures and limited proven treatments for SFN but, this does a not mean you will be a sufferer to such a degree of needing opiods or anti depressants. Pain Management for SFN can come in many holistic forms from changing diet to massage myofacial release, etc... Many factors go into treatment based on necessity...pain variations, underlying cause, earlier detection, other health factors.

Please do not let this forum scare you and keep in mind that each person's story and experience is that of their own.

I hope what you take from Connect is support, education and compassion towards your personal story.

Share all of your concerns with your Neurologist and they can make an educated suggestion on your needs...then, you and your body are in the ultimate drivers seat!

Rachel

wisfloj | @wisfloj | Oct 10, 2019

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!