Idiopathic Small Fiber Neuropathy Research

For some reason, the problem of neuropathy, any kind of neuropathy, has sort of been pushed to the back burner or pharma R&D. I can say the same thing about pain. My industry has let the public down tremendously in the area of non-opioid pain treatment. Also, my guess is that non-neurology residents get about 5 minutes of instruction about neuropathy, if that.

Idiopathic SFN is particularly frustrating because most of the neuropathy studies deal with the more “popular” types of neuropathy. I am still holding a slight ray of hope that my DRG stimulator trial will go well, but I wouldn’t bet money on it.

If anyone knows of any pharmaceutical product that is close to completing a Phase III trial(s), post it here. Hang in there everyone!

Good morning. Hang in there everyone maybe one day it’s been a journey for all of us and boy has it been from all the different test , spinal cord stimulators the meds the list go on . I was on the search for a cure know matter what 3 years Into this journey a failed surgery etc . My neurologist sent me to get a spinal tap I knew I had hereditary SFN from biopsy but I knew I had a lot more going on then SFN , after this procedure and weeks pass I finally get my results . Not only did I have SFN and I also PN which I kinda knew that and Spinal Arachnoiditis which is explained my the pain that never shuts off
the it’s like having pain cancer but there is no end to it you just endure it day in and day out . The up side even though I go through this daily is now I have a diagnosis I know there is no cure for any of it . But with this my Neurologist was able to take a more aggressive approach to my condition . I still have to take Gaba
4800 mg a day NI’s Trig for spasms and uncontrollable muscle jerks , and Hydrocodone at very high doses this helps some and least I can sit in my wheelchair at the dinner table now say a prayer and eat a meal with my family I can now take a 30 minute ride that’s not much to say but I’m living a little I’m ok with that under the circumstances. My routine daily is to contract the muscles even though I can’t walk and my use my hands our not steady I fight … I bought a stimulator like they use in a chiropractor office very similar it’s had a bunch of tape electors.I place these on each leg and each arm and back 30 minute intervals 2 times a day and stimulate and contract those muscles so I don’t loose them essence it’s like working out . I was a body builder for 20 years and competed and taught Jujitsu so In theory I knew I couldn’t be at this level ever again because I have no feeling in my legs nor do I feel hot or cold I still have to get those muscles to work or I would loose them so stimulation was a last ditch hope for me and if anyone is reading this it’s works start slow . Sorry for the long post I see a lot of folks on here with the same or similar conditions , I say to you be positive it’s hard but think positive never give up on you period you our the most important part. Seek the best you will have down falls it’s just the journey there is light at the end . Find something YOU enjoy seek it and just like Nike slogan just do it … even if it’s hurts you feel better afterwards trust me . Stay positive even through the pain and be best you can and do t be afraid to try new things if you fail at least you tried and in your mind and soul you’ll feel better because you tried .
Again I’m sorry for the long post God Bless each and every one of you and god touch these folks that our in time of need that our in pain lord and give them the courage , strength and passion to reach out and do the impossible lord thank you everyday for the blessing in Jesus name Amen 🙏🏻
Regards Chris J .

I’ve had SFN, i.e. PN in my feet for ~2.5 years. FWIW, I’ve been taking Oxycodone and Methadone for severe pain. It was very effective for the first 2 years, now somewhat so and for a shorter period of time. This followed attempts with Lyrica and other SFN specific drugs, without any pain relief.

I have accumulated a number of esoteric research articles while looking for etiology and/or effective treatment. The bottom line for causation for me links the possibility of Statins and / or heavy alcohol use. I use Statins for CAD and will ask the cardiologist. I also drank a lot during college but quit over 40 years ago??? I’m wondering if ceasing the statins would help? Does anyone else link either of these possible causes; and how adjusting for them might be helpful?

I don’t know if anyone has referenced this small “owner’s manual” for SFN; it’s available at Amazon and online download, ebook at hiltonbooks.com:
Small Nerves, Big Problems: A Comprehensive Patient Guide to Small Fiber Neuropathy Paperback –
by MD Todd Levine , et al Neurologists
Amazon’s preview:
Small Nerves, Big Problems is the only comprehensive resource available for patients with small fiber neuropathy. Written by eight leading neurologists on this disease, the content provides patients and caregivers with the latest information available today about small fiber neuropathy: what causes it, what the common signs and symptoms are, how it’s diagnosed, and ways to manage daily life and minimize pain. Small fiber neuropathy is increasingly being recognized as a major cause of painful burning sensations in those suffering from diabetes. Small Nerves, Big Problems provides accessible, necessary information to better understand and cope with this disease.

* Publisher ‏ : ‎ Hilton Publishing; 1st edition (January 1, 2017)
* Language ‏ : ‎ English
* Paperback ‏ : ‎ 100 pages
* ISBN-10 ‏ : ‎ 0998328200
* ISBN-13 ‏ : ‎ 978-0998328201

There's actually a discussion on the book here - https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-book/

Very inspiring, thank you!

I am considering this: https://www.frontiersin.org/articles/10.3389/fneur.2021.722875/full (I have been through the same horrible journey as you have).

I have all these symptoms and many other neurological type symptoms for almost three years now and many specialists have no idea what to do and most all try to blame it on anxiety BUT I know it is NOT anxiety causing all these daily and relentless Neuro type symptoms.
I've finally pushed my Neuro Dr to refer me out to another neuro doctor in Tampa FL to finally do a SFN biopsy since my neuro Dr does not do them.

Either my symptoms are from a virus I caught in Nov 2019 which I believe was Covid OR maybe it's from this LOOP recorder planted in my left chest area OR could it be due to the Metaprolol heart meds I've been taking for 30 years now??

All these specialists I've seen, millions of dollars in testing of all kinds YET no real answers.

I was on a one year wait list to see a Mayo Dr of Neurology in Jacksonville FL. Dr Cheshire (even though many patients like me who have already seen this Dr gave him poor reviews) the day before I was supposed to make the seven hour drive to Mayo I became sick and tested positive for COVID (again) so I had to cancel my long awaited appointment.

It does concern me though that the Mayo Neurologist in FL has gotten so many poor reviews by many patients who are suffering like I am yet they went to Mayo to see Dr Cheshire and they were not happy with his attitude and comments made at them.

I'm soooo fed up with so many doctors blaming these debilitating symptoms on ANXIETY and quickly prescribing these darn antidepressants.

I do not like pills - I have a bad liver of idiopathic cause like my neuropathy so I heavily scrutinize painkillers and any drug I think i should be able to avoid.
However, when I had my sudden onset of crippling neuropathy and was sent to a nursing home/rehab for 5 weeks after my long hospital stay, to learn how to live in a wheelchair with limited-use hands, I had the best resident doctor ever. He prescribed an antidepressant in a low dose, Mirtazipine (before my liver turned bad). He said “I’m not even going to ask if a young person brought here in a wheelchair with something terribly unknown going on in her body might be a little depressed”. He also explained it was to help me sleep better, and my body needs good rest. He also explained how some of these drugs have shown other medicinal benefits as well.
When I got home, I weaned off of the Mirtazipine because it made me a little drugged, and I didn’t have nurses to rely on to get me safely to the bathroom and things. Then when my liver suddenly went bad, I now have to weigh the risks and rewards of everything I ingest, so I don’t do the depression/anxiety drugs but won’t say they don’t have benefits for a lot of folks.
But I get what you’re saying about making sure the anxiety isn’t the diagnosis of the “cause” vs the “effect”. We know our bodies- find a doctor who will listen to you. I went to my PCP 19 yrs ago (long before neuropathy) thinking I needed a referral to a cardiologist.. I was having occasional tachycardia and sometimes when running I felt like I was going to faint and would have to stop. He lectured that I was 39, a marathoner, and fit, and it’s just some anxiety going on, normal for my age (and sex). I took one of his prescribed pills before throwing them in the trash. Three weeks later I woke up in a hospital ICU after 3 days on life support. Collapsed while running, “Sudden Cardiac Death”, good ole undiagnosed heart condition that a cardiologist would have seen if I had been referred. By the grace of God, I’ve been told people had been around to perform and get medical help and minimize oxygen loss to brain before medics and hospital took over. My PCP visited me in the hospital, he was in tears as he apologized, and I know that he too learned a lesson with me. So now, 19 years later I try so hard to be a good advocate for my health. It’s too easy to be labeled and put into a group based on “averages” instead of validating that you are either in that average group or NOT. And 19 years later, I humbly say I have not yet mastered my own patient advocacy, but I keep trying as politely as possible.
Listen to your body; also listen to our doctors who know more than us, but be comfortable they are not dismissing us on things they might be able to test. Get second opinions. Listen to the stories of folks in this group - I have found a remarkable amount of validation here, even if it’s not confirmation I’d hoped for. Bless you on this journey!

Hi Joanne, welcome back to the discussions. I sent an email about your problem with posting a comment to your own post so we can get to the bottom of the problem. We are not censoring you.

But back to you. I'm sorry to hear that COVID has delayed your appointment at Mayo Clinic. It was so exciting that you didn't have to wait a year for the appointment as originally thought and that the appointment was moved up, only to be cancelled because you caught COVID.

Have the COVID symptoms subsided now? Have you been able to reschedule your appointment?