I'm 78yrs old now. I was finally diagnosed with small fiber neuropathy several yrs ago. It was puzzling why it presented that way. Awhile later, it occurred to me that I was a heavy alcohol drinker until about age 30yrs. I mentioned it to my doctor and was told it could cause it. The affected area is just on the facial side, down to behind the toes. I experience all the sensations such as tingling, burning, numbness. After trying a few medications, which none helped, I was started on Amitriptyline and it was substantial help immediately. That's what I take now. I discovered a balm called +Plus CBD, 100mg. When it bothers me more than usual, I apply the balm to the affected area and it gives substantial relief. It's something I live with anymore - don't know if this helps anyone but that's my experience.
Thanks for sharing what works for you. How did you discover these medications? I am sure other members would like to know. Sometimes it seems like such a big, messy world and it is hard to trust some of the promotors and their ad campaigns.
Chris
Hi there Joy (if I can call you by your name?), I understand. It is frustrating. I guess you can wait on the skin biopsy........it is just that a confirmed diagnosis tells other medical entities and professional clinicians what they are dealing with in order to help you. You can have multiple punches, e.g. ankle, leg, etc. They are hardly invasive. It takes about 3 seconds and a small bandaid. As long as your neurologist is the only clinician you have and he treats you for SFN, you should be fine. However, if you want to seek help at another facility like Mayo Clinic, you will need the skin biopsy results. And if you want to take advantage of MFR or other therapies, your insurance may require confirmation of the diagnosis.
Now....let's focus on something else.......medical cannabis. Do you live in a state in which medical marijuana is legal? Have you had any experience with medical cannabis? I have managed to control my SFN pain and discomfort without any other pain medicine. I happen to be highly sensitive to medications so this is perfect for me.
I do have GAD.....general anxiety disorder as a result of my SFN and so I use Duloxetine (Cymbalta). Since anxiety creates pain and pain creates anxiety, this helps me avoid that whole merry-go-round.
I see that you are learning a lot from John Bishop about the supplements which help him tremendously.
We are here for you..........no questions or thoughts are ever unwelcome.
Chris -
I had a sural nerve biopsy last year that confirmed I had PN and severe axonal nerve damage. I’ve never been told whether it is SFN. Would the sural nerve biopsy discover SFN, or is the skin punch biopsy a specific test for this? I ask because I finally get to see a new neurologist in our system in late June, and am getting my questions ready!
I’m sorry to hear of your Covid exposure after all you do to take care of yourself. It must be harder in our bodies given the challenges we face. But I’m glad you finally got to restart your SFN care and relief. Hugs!! I appreciate your help!
Chris -
I had a sural nerve biopsy last year that confirmed I had PN and severe axonal nerve damage. I’ve never been told whether it is SFN. Would the sural nerve biopsy discover SFN, or is the skin punch biopsy a specific test for this? I ask because I finally get to see a new neurologist in our system in late June, and am getting my questions ready!
I’m sorry to hear of your Covid exposure after all you do to take care of yourself. It must be harder in our bodies given the challenges we face. But I’m glad you finally got to restart your SFN care and relief. Hugs!! I appreciate your help!
Hi Debbie, Thought I would jump in for Chris @artscaping to share some information I found that may answer your question.
"What is sural nerve biopsy for?
According to literature, sural nerve biopsy provides the most useful results in interstitial neuropathies, such as vasculitis, granulomatosis, amyloidosis, or atypical forms of CIDP (7, 22). Nov 22, 2019" --- Diagnostic Value of Sural Nerve Biopsy: Retrospective Analysis of Clinical Cases From 1981 to 2017: https://www.frontiersin.org/articles/10.3389/fneur.2019.01218/full
Hi Debbie, Thought I would jump in for Chris @artscaping to share some information I found that may answer your question.
"What is sural nerve biopsy for?
According to literature, sural nerve biopsy provides the most useful results in interstitial neuropathies, such as vasculitis, granulomatosis, amyloidosis, or atypical forms of CIDP (7, 22). Nov 22, 2019" --- Diagnostic Value of Sural Nerve Biopsy: Retrospective Analysis of Clinical Cases From 1981 to 2017: https://www.frontiersin.org/articles/10.3389/fneur.2019.01218/full
Thank you @johnbishop for noticing and responding! As you both know, our brains are constantly swirling with information as we try to narrow down what exactly we might or might not have based on the types of tests we have or haven’t had, as we all try to experiment and hone in on what works best for us individually. You and @artscaping have been such a wealth of knowledge, experience, and inspiration. I feel better prepared each time I have an appointment, and as we all know, they don’t come about that frequently. Thanks again!
Thank you for reaching out. My neurologist has been discouraging me from doing the skin biopsy for several reasons. He said he is pretty sure that’s what I have, so why do something invasive that isn’t necessary. He also said if it comes back negative, that doesn’t mean I don’t have it, it could just be that it didn’t show up in the piece they took. So I thought I wanted to do the test to know for sure, but am now pretty confused if I won’t know either way. I just recently found out this might be the diagnosis, so I haven’t tried a lot of things yet. I did try acupuncture, and that didn’t help. I am also taking a 5000 mg of Vitamin B12 every day. I guess I could have SFN without pain and burning. I’m just fearful of what is to come and how fast the progression will be.
A skin punch biopsy is 88% accurate in diagnosing small fiber neuropathy. The question is do you have idiopathic SFN? I have been dealing with it for 6 years now. I take Cymbalta, And Lyrica, which help very little. Next will be medical cannabis when they get the dispensaries set up. I have tried a SCS and a Dorsal Root Ganglion stimulator and not didn’t help. I spent a week at the Mayo Clinic in Rochester last June to confirm the diagnosis.
I would love to find a clinical trial that looks at ISFN, but they are very rare. Most neuropathy trials are for Type 2 diabetics and chemo induced neuropathy, which is very frustrating.
I would have the test done for sure. Good luck to you!
Thank you for the information. Are you taking these medications for pain or for other symptoms? I don’t have pain or burning. I don’t know if there are any medications or things that help the tingling. What is SCS and a Dorsal Root Ganglion? I am also wondering if any cannabis topicals would help the tingling.
Has anybody tried a grounding mat for their SFN? I know someone who sleeps on a grounding mat and it as significantly helped her neuropathy in her feet.
Thanks for sharing what works for you. How did you discover these medications? I am sure other members would like to know. Sometimes it seems like such a big, messy world and it is hard to trust some of the promotors and their ad campaigns.
Chris
How did I find those meds ? I am a veteran and receive my care from the VA. I suffered some discomfort from my neuropathy for many years thinking it was the varicose veins that I had. After I got accepted for VA care, the discomfort got so that I couldn't take it any longer. That's when neurology started trying to help me. My condition was not the usual presentation of neuropathy, After many appts and tests, finally, they diagnosed it as small fiber peripheral neuopathy. I started with Gabapentin which did nothing (it does for some people). Under a new doctor in the pain clinic, he started me on Amitriptyline - which helped - and increased the dose until I got substantial relief. It had be a long drawn out process through several medications including narcotics that did me the worst - not a good one for neuropathy. I do suffer with it now, but Amitriptyline can be adjusted to compensate for the severity of it. It is definitely a formidable issue to deal with. The key for me was a good neurologist and pain clinic doctor.
I also have little feeling in my hands, feet and lower legs, but no pain. I had to give up golfing and bowling because of the balance problem and stopped driving when I couldn't feel the gas and brake pedals. I also tried acupuncture, but it did not help. My father and one sister had the same problems so I am convinced mine are genetic.
I don't have pain either. It started 16 years ago and only recently has it moved up the leg. I also tried acupuncture but it did not work. My father had it too so I also think it was genetic.
I have it in my feet, below the knees and the tips of 3 fingers on my right hand.
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Thanks for sharing what works for you. How did you discover these medications? I am sure other members would like to know. Sometimes it seems like such a big, messy world and it is hard to trust some of the promotors and their ad campaigns.
Chris
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1 ReactionChris -
I had a sural nerve biopsy last year that confirmed I had PN and severe axonal nerve damage. I’ve never been told whether it is SFN. Would the sural nerve biopsy discover SFN, or is the skin punch biopsy a specific test for this? I ask because I finally get to see a new neurologist in our system in late June, and am getting my questions ready!
I’m sorry to hear of your Covid exposure after all you do to take care of yourself. It must be harder in our bodies given the challenges we face. But I’m glad you finally got to restart your SFN care and relief. Hugs!! I appreciate your help!
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1 ReactionHi Debbie, Thought I would jump in for Chris @artscaping to share some information I found that may answer your question.
"What is sural nerve biopsy for?
According to literature, sural nerve biopsy provides the most useful results in interstitial neuropathies, such as vasculitis, granulomatosis, amyloidosis, or atypical forms of CIDP (7, 22). Nov 22, 2019" --- Diagnostic Value of Sural Nerve Biopsy: Retrospective Analysis of Clinical Cases From 1981 to 2017: https://www.frontiersin.org/articles/10.3389/fneur.2019.01218/full
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3 ReactionsThank you @johnbishop for noticing and responding! As you both know, our brains are constantly swirling with information as we try to narrow down what exactly we might or might not have based on the types of tests we have or haven’t had, as we all try to experiment and hone in on what works best for us individually. You and @artscaping have been such a wealth of knowledge, experience, and inspiration. I feel better prepared each time I have an appointment, and as we all know, they don’t come about that frequently. Thanks again!
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4 ReactionsI am interested in this as well. Hugs
A skin punch biopsy is 88% accurate in diagnosing small fiber neuropathy. The question is do you have idiopathic SFN? I have been dealing with it for 6 years now. I take Cymbalta, And Lyrica, which help very little. Next will be medical cannabis when they get the dispensaries set up. I have tried a SCS and a Dorsal Root Ganglion stimulator and not didn’t help. I spent a week at the Mayo Clinic in Rochester last June to confirm the diagnosis.
I would love to find a clinical trial that looks at ISFN, but they are very rare. Most neuropathy trials are for Type 2 diabetics and chemo induced neuropathy, which is very frustrating.
I would have the test done for sure. Good luck to you!
-
Like -
Helpful -
Hug
3 ReactionsThank you for the information. Are you taking these medications for pain or for other symptoms? I don’t have pain or burning. I don’t know if there are any medications or things that help the tingling. What is SCS and a Dorsal Root Ganglion? I am also wondering if any cannabis topicals would help the tingling.
-
Like -
Helpful -
Hug
1 ReactionHas anybody tried a grounding mat for their SFN? I know someone who sleeps on a grounding mat and it as significantly helped her neuropathy in her feet.
How did I find those meds ? I am a veteran and receive my care from the VA. I suffered some discomfort from my neuropathy for many years thinking it was the varicose veins that I had. After I got accepted for VA care, the discomfort got so that I couldn't take it any longer. That's when neurology started trying to help me. My condition was not the usual presentation of neuropathy, After many appts and tests, finally, they diagnosed it as small fiber peripheral neuopathy. I started with Gabapentin which did nothing (it does for some people). Under a new doctor in the pain clinic, he started me on Amitriptyline - which helped - and increased the dose until I got substantial relief. It had be a long drawn out process through several medications including narcotics that did me the worst - not a good one for neuropathy. I do suffer with it now, but Amitriptyline can be adjusted to compensate for the severity of it. It is definitely a formidable issue to deal with. The key for me was a good neurologist and pain clinic doctor.
-
Like -
Helpful -
Hug
2 ReactionsI don't have pain either. It started 16 years ago and only recently has it moved up the leg. I also tried acupuncture but it did not work. My father had it too so I also think it was genetic.
I have it in my feet, below the knees and the tips of 3 fingers on my right hand.
I wonder how far it will progress now.
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1 Reaction