Small Fiber Neuropathy

I have SFN. The results of my biopsy (done last Oct.) were ankle: zero and knee: zero and shoulder: normal. It is caused by Sjogren's Syndrome for which I take hydroxycloriqen for Sicca. (For which it does help) It hasn't done anything for the SFN. I have no pain or numbness, for which I am grateful but the lack of those symptoms made it hard to diagnose. I do have loss of weight borne balance, which is a problem on many levels. I can't jump out of the way of my horses so find it difficult to be around them. And forget cleaning their feet. Did that one time and face planted. Not good. My legs seem to be worse (loss of muscle mass) inspite of IVIg treatments. I think I need something to remove the part of my system that is attacking my leg muscles. But my Doctor is unreachable (not just by me) so I am in a quandry as to which way to go. I told my rheumy all this and she said talk to the Infusion people. I will this Friday at my next treatment. We'll see.....

Hi. I have SFN symptoms as well. I've had all the tests at Mayo, over a period of three years now. Everything is pretty normal. My doctor says that my "hard drive is fine; but the software just isn't very good." 🙂

I've tried a lot of things. Gabapentin and Cymbalta among them. Doc says that if you keep increasing gabapentin, it will eventually help. But of course, you might be sleeping all the time or wobbly with dizziness. I just couldn't tolerate the side effects and it didn't seem to help me with the pain very much.

Cymbalta caused very strange and vivid dreams at night--and of course, there are sexual side effects, too. And, it didn't seem to help my symptoms.

Like you, I have quite a lot of pain--numbness and shooting pains, the feeling of my feet and legs being on Novocain--or just coming off the Novocain--all the time. Yuck! It also is worse as the day goes on and physical activity, while good for me, also seems to exacerbate the symptoms.

I, too, have wondered about the glass of wine. I often have a glass for dinner as well and I do think that it affects my pain. Not if I do it just once in awhile, but if I do it regularly. I'm not actually sure of this, though, but am trying to monitor the reaction over time. I do like a glass of wine, but I suppose I can get used to not using any alcohol. If it actually helps, it's worth it.

I've also thought about seeing a homeopath/acupuncturist to see if there is anything to be gained there.

I went to the pain rehab clinic at Mayo two years ago and am grateful for my experience there. Meditation and relaxation, trying to keep myself from emotional attachment to the symptoms by constantly seeking solutions--all that has been helpful to me.

I hope you experience some relief in the days ahead.

Hang in there.

Hello @nrivers, it's nice to meet you! Thank you, Chris @artscaping for the introduction.

Chris and I met in 2020, when I first came to Connect trying to make sense of odd symptoms such as numbness, shooting pains and yes, being cold yet burning at the same time. Mind boggling, isn't it?!?

I was diagnosed with SFN followed by learning of the umbrella explanation called Central Sensitization Syndrome (CSS) which covered other chronic conditions like migraine, back pain, TMJ, sensory hypersensitivity, etc. It's difficult coming to terms with chronic conditions. Chris once told me that she put her feet on the floor each morning and "welcomed her pain". HAH, years ago I resisted that sentiment but now understand that when floating on a rubber raft in the rapids, it's best to float with the current instead of against it.

Your doctor said it best - "hard drive is fine; but the software just isn't very good." My pain rehab center (PRC) doctor at Mayo referenced this phrase as well. I graduated 3 years ago and also continue to "work the program", like you, by means of applying stress-management and coping tools. Strategies and scheduling are a must for me to get from one day to the next with as much grace as possible. How do you manage finding your sweet spot between physical activity and rest, respecting your symptoms, but not letting them dictate life?

Hmm...I'm wondering which PRC you attended. Do you keep in touch with any of your PRC classmates or belong to the private Facebook group (Florida) called "Living the C" for continued support?

Hi Rachel,

Thanks so much for your kind note!

I started with these symptoms very suddenly...seemed to dovetail with a UTI after a medical test and the prescription of Cipro to combat it. That was back in the fall of 2019.

I went to Mayo, Rochester for testing and diagnosis. I've been returning each year for repeat testing, but nothing much changes.

I believe I went to PRC in October of 2020. Like you, it was very helpful for me: I learned so much. It has been a challenge to apply what I've learned, though: I tend to fall back to previous patterns of behavior. The dreaded catastrophizing, searching for the silver bullet that will return me to better health, etc.

Nevertheless, I do catch myself and have all sorts of tools to work with. I use Headspace.com for meditation daily, have a wonderful spouse and lots of friends, and work part-time now in my retirement. I am a very active person physically...I love to hike, ski, bike, trout fish, garden, petc...which is good and yet so easy for me to overdo...paying for it for days afterwards.

I also had an aortic valve replacement surgery (not the tavr type!) in 2022, which has complicated things a bit.
I continue to go to cardiac rehab twice a week...most of the same exercises we learned at PRC.

I had a PRC day long follow up refresher on my calendar, but then the heart problem emerged, so I haven't actually done it. Have you? Did you find it helpful?

For about a year/year and a half, I was in regular contact with 3 of
my classmates from
PRC, but that eventually faded. All of us really became close during those 3 weeks, right? Amazing--different ages, genders, conditions--but everyone really supported everyone else.

I didn't have anyone in the group with my particular symptoms, so it is great to make the connection with you. I know I, too, have CSS. All the hallmarks of personality--perfectionism, childhood trauma, hypervigilance, etc.

But a day at a time!

Thanks again for writing...and mentoring. All the best to you.

My name is Dave, incidentally.

Hey, Dave -
Agreed, it's always nice to bump into fellow PRC graduates. My Florida class dissipated after several months of Zoom stretching together and supporting each other, but I'm online with the "Living the C" -FB support group and we follow the PRC rules of not engaging in pain behaviors or pain talk. I also keep in contact with my nurse and Dr. as needed through the portal which is helpful. I encourage you to reach out again when you're ready to reschedule a follow up refresher course. I think you'll benefit from being in the rehab environment again with the PRC mindset.

In order to not monopolize this Neuropathy thread with our CSS and PRC talk, here are some conversations you may be interested in to connect with others who have Central Sensitization and have shared the PRC experience. You would add value to the discussions given your experience.

Has Anyone Been Diagnosed with Central Sensitization? -
https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/
Mayo Pain Rehab Program: Signing off and my comeback afterwards-
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
You are not alone in "catching yourself" - I do it, too. Remember the phrase "Catch and Correct"?

Pat yourself on the back, Dave, for being self-aware and give a little grace, but by all means stop chasing the silver bullet, my friend! 😉 See you over in the other conversations.

Best to you -
Rachel

PS: It's very awesome that you are so active! Love that for you.

Hi, I too have been to many different doctors including pain management centers and have had varying treatments including acupuncture light therapy, various patches, Eastern medicine, and have been seen by neurologists as well as pain specialists acupuncturists and lastly podiatrists. The podiatrist found that it was small fiber neuropathy idiopathic by doing a biopsy about 1 in square above my ankle on the inner side of my left foot. I mention that because she was the first one to do a successful biopsy. She said that the measurements were standards. I had had a punch biopsy which was not good for anything.
I am surprised you have not mentioned the supposed gold standards for neuropathy being gabapentin and Lyrica. I tried Lyrica once and had anaphylaxis. No more for me. I have read good and bad about both you decide. Good luck with your neuropathy mine started as heat and pain in the soles of my feet. It then progressed to pins and needles then to night pain twitching during the night having my toes curl feeling pain not feeling my toes and so on. Now I wear the most comfortable shoe I can find for me which is a crock.
I wish all of you IPN people lots of luck. My neuropathy has been with me for over 15 years.
Caryn

@cax75 Hi Caryn, how grateful you must have been, not for the diagnosis of IPN, but for finally being able to have a firm diagnosis. It's never a pleasant experience to be wondering, searching, and testing, just trying to get clarity on what may be causing symptoms.

Yep, the standard first line of treatment is typically nerve medication like Lyrica or Gabapentin. Sorry that you had a poor experience with Lyrica. We're all so uniquely different that even with the same diagnosis, medications may work differently for each of us, or not at all. Sort of like how a skin punch biopsy proved my small fiber neuropathy, but you required a different location for biopsy to diagnose IPN. It's great to be well-rounded with information and hear out others experiences, but ultimately draw our own conclusions based on our personal experiences.

I've heard a lot of folks talk about Crocs being comfortable footwear for neuropathy. My father has diabetic neuropathy and wears fur lined Crocs in the winter and regular in the summer. Outside of Crocs, do you have any other tips or pain management tools that have helped you along your 15 year neuropathy journey?

Really great meeting you! ☺

Hey, Dave -
Agreed, it's always nice to bump into fellow PRC graduates. My Florida class dissipated after several months of Zoom stretching together and supporting each other, but I'm online with the "Living the C" -FB support group and we follow the PRC rules of not engaging in pain behaviors or pain talk. I also keep in contact with my nurse and Dr. as needed through the portal which is helpful. I encourage you to reach out again when you're ready to reschedule a follow up refresher course. I think you'll benefit from being in the rehab environment again with the PRC mindset.

In order to not monopolize this Neuropathy thread with our CSS and PRC talk, here are some conversations you may be interested in to connect with others who have Central Sensitization and have shared the PRC experience. You would add value to the discussions given your experience.

Has Anyone Been Diagnosed with Central Sensitization? -
https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/
Mayo Pain Rehab Program: Signing off and my comeback afterwards-
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
You are not alone in "catching yourself" - I do it, too. Remember the phrase "Catch and Correct"?

Pat yourself on the back, Dave, for being self-aware and give a little grace, but by all means stop chasing the silver bullet, my friend! 😉 See you over in the other conversations.

Best to you -
Rachel

PS: It's very awesome that you are so active! Love that for you.