1. < Neuropathy

Small Fiber Neuropathy

Posted by Marlene Eckert @me1229, Oct 31, 2019

I am currently on 1200 mg of Gabapentin twice daily. My pain is not totally controlled at this level. My pain level gets worse as the day goes on and is worse at night. I like my one glass of red wine at night. I wonder if that is an issue with my pain. I’ve tried adding Cymbalta that created severe dry mouth then stopped that and tried Lyrica and that was just as bad. Now my doctor wants to try increasing the Gabapentin to 3600 mg a day. Here is another point. Can anyone tell me about their experiences

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

linuxusr | @linuxusr | May 5 10:48am
In reply to @patriciaschulz1950 "I tried Gabapentin - for three months and did not like how I felt. The doctor's..." + (show)
@patriciaschulz1950

I tried Gabapentin - for three months and did not like how I felt. The doctor's office said give it time your body will get used to that feeling. That was baffling to me. I don't want to MASK my SFN, I want to know why and how can I feel better. This group has helped me to open my eyes and to start researching more on my own. Just understanding and reading other comments helps me be more hopeful. Thank you.

Jump to this post

I do not understand SFN. What is the name of the test that concluded SFN? For example my EMG results indicates (paraphrasing), a severe peripheral polyneuropathy, where the disfuntion is in sensori-motor axonal signaling, and "poly" meaning multiple nerves in all peripheral limbs: hands and arms; feet and legs.

Could it be that SFN is also included it my report or is SNF a different diagnosis resolved from a lab distinct from EMG? I received an explanation of my lab result in Spanish, my second language, so I could not ask further questions.

REPLY
1 reply
linuxusr | @linuxusr | May 5 10:49am
In reply to @minfromtexas "I had very little trouble getting off of Gabapentin, with a daily dosage of 1200 mg...." + (show)
@minfromtexas

I had very little trouble getting off of Gabapentin, with a daily dosage of 1200 mg. I tapered off over a period of about 14 days. Yes I felt a bit off, but it was tolerable. After that process my doctor prescribed Lyrica which did help, but the side effects were awful, So, I went through the same process again. Lyrica was harder to get out of my system, but if you're motivated enough you can do it. Now, I'm back on Gabapentin with a different dosing program i.e. 400 in the morning and 800 just before bed. This new dosing has helped with sleep. Like someone else said, you really do have to be your own advocate. Best o' luck to you and everyone else.

Jump to this post

Are not Lyrica and gabapentin the same, one being the name of the manufacturer and the other of the chemical?

REPLY
dlydailyhope | @dlydailyhope | May 5 2:06pm
In reply to @linuxusr "I do not understand SFN. What is the name of the test that concluded SFN? For..." + (show)
@linuxusr

I do not understand SFN. What is the name of the test that concluded SFN? For example my EMG results indicates (paraphrasing), a severe peripheral polyneuropathy, where the disfuntion is in sensori-motor axonal signaling, and "poly" meaning multiple nerves in all peripheral limbs: hands and arms; feet and legs.

Could it be that SFN is also included it my report or is SNF a different diagnosis resolved from a lab distinct from EMG? I received an explanation of my lab result in Spanish, my second language, so I could not ask further questions.

Jump to this post

@linuxusr
SFN is a separate diagnosis. It requires a skin punch biopsy. I had tissue samples from my ankle/calf and upper thigh that showed severe small fiber nerve damage. SFN can affect your whole body over time and impacts skin sensations and autonomic nervous system that controls heart, lungs and digestion. Mine started in my feet with burning, pins and needles and tingling pain/sensations and moved up my legs to arms/hands and have symptoms affecting heart, breathing and digestion (my gallbladder stopped working which was confirmed by a HIDA scan. It can be very painful/uncomfortable. I take alpha Lipoic acid and Acetyl l carnitine supplements, 100 mg Gabapentin (at night), and use lidocaine patches/creams for nerve pain.

REPLY
dlydailyhope | @dlydailyhope | May 5 2:13pm
In reply to @linuxusr "I was prescribed gabapentin for my lifelong anxiety disorder, and it was a disaster. Whereas it..." + (show)
@linuxusr

I was prescribed gabapentin for my lifelong anxiety disorder, and it was a disaster. Whereas it resolved some anxiety, it also erased my personality and my normal sense of self. You could characterize that as depersonalization or "zombie effect." I felt that the "zombie effect" was much worse than the anxiety. And, then, because gabapentin is subject to discontinuation syndrome, it took one month to wean off, being very conservative on dose reduction.

When my neurologist prescribed it, I refused. It appears to work simultaneously on two pathways, neurological and anxiolytic. The pathways end up being conflated and there is no separation when you take this medication. I told my neurologist that my brain was more important than my leg and she understood. If, in fact, in the future, my pain becomes intolerable I will re-visit gabapentin, asking my neurologist if I can take a very small sub-therapeutic dose, to evaluate my mental status and see what I can do. But that's for the future and this is now. My Mom was also diagnosed with PN but I do not know the specific diagnosis. She too had problems with gabapentin making her feel "loopy" and finally declined it. For persons without psychiatric disorders gabapentin is probably a surer bet.

Jump to this post

@linuxusr
I meant to mention that SFN is considered an autoimmune disorder in some idiopathic cases if not linked to diabetes, toxins, etc. Mine is idiopathic and I have other autoimmune illnesses. I also have anxiety and depression and treated currently with 150 mg bupropion but have tried duloxetine, fluoxetine and sertraline in the past. You definitely need to treat the pain because chronic pain makes mental health challenges worse. I wish you the best finding the right treatments for you.

REPLY
thwheezer | @thwheezer | May 5 3:07pm
In reply to @johnbishop "Hello @thwheezer, You will notice that we removed your email address to protect your privacy since..." + (show)
@johnbishop

Hello @thwheezer, You will notice that we removed your email address to protect your privacy since Connect is a public forum which makes your email address available to anyone with an Internet connection. Members can share contact information using the private message function of Connect, see the Help Center for more information - https://connect.mayoclinic.org/help-center/.

I have idiopathic small fiber PN also with no pain and have had it more than 20 years before seeking a diagnosis in 2016, mostly because all of my prior PCPs had told me there is nothing they can do for the numbness I was feeling. My PCP in 2016 prescribed gabapentin ( I think it was 200 mg daily) but I stopped taking it two weeks after starting because it wasn't helping the numbness. Then after a short conference with my Mayo PCP and her team and a few questions about my symptoms, they agreed and their team lead told me that gabapentin doesn't help with numbness, only for the related pain with neuropathy.

Just a thought but I wonder if your retired surgeon friend may be onto something with drug interactions with gabapentin. I have read that there are some drug interactions with morphine listed as one of the drugs.

"Gabapentin can interact with losartan, ethacrynic acid, caffeine, phenytoin, mefloquine, magnesium oxide, cimetidine, naproxen, sevelamer and morphine. Gabapentin use is contraindicated in patients with myasthenia gravis or myoclonus."
-- Review about gabapentin misuse, interactions, contraindications and side effects:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5308580/

Jump to this post

Thanks John

REPLY
View MoreView Less
Please sign in or register to post a reply.