Small fiber neuropathy

Good Morning…I have elected not to take the anti-depressants to treat my SFN. I have tried all three - Duloxetine brought my pain level down to a steady 5/6 , however, caused severe intestinal problems I could not live with. Of course pain management would prefer I try a new one…right now exhausted from trying to find something to help me get through the day. This is what I have learned about myself. Routine, Meditation , exercise help. None of the supplements have made a difference if I am off or on. So now has I finished the bottles of Lipoic Acid and Magnesium Glycinate - I will NOT refill. I am always ready to try something new and hopeful it works. I let my legs and feet (well whole body) become weak from the pain…and along with that came depression. Once the Orthosurgeon (foot) told me that my feet were structurally sound and that I had great bones…walk and exercise as much as I could. The benefits will out weigh the pain. I started pool exercises - and after 9 weeks, I have developed feet, leg and arm muscles. I actually taught myself to swim again. I am proud of myself. From my neuromuscular doctor he says SFN or Idiopathic Neuropathy - your body does not make enough cortisol. I am still researching that - and cant’ imagine why our medical /pharmaceutical professions haven’t figured that out yet. Exercising is painful- my feet, calves burn/tingle even more - I just do my best to “calm” my nerves down.. Sometimes that’s resting flat on the bed with ice and mediation music, sometimes heat and a good movie while laying down. It’s as if you have to trick your nerves/mind into thinking “calm down”…. Sorry so long. I truly don’t like the side effects from anti depressants, but will never say never. This is a horrible affliction. I wish you well.

Hi Patricia,

I'm so sorry to hear you also deal with SFN. It is an incredibly challenging condition to live with. Chronic pain is no joke. Like you I am also idiopathic with no known cause at moment. I am currently on Lyrica (Pregabalin), Zoloft and LDN. I did not want to take an antidepressant but at the time this started it was critical that I did.The pain was so severe I did not know how I could live with it. Zoloft helped me to deal with it. I am hoping to get off of it at some point because it has caused a great deal of weight gain along with Lyrica. Antidepressants don't work for everyone but I think in critical situations they are a lifesaver even with their side effects. I tried R Alpha Lipoid Acid but it bothered my stomach so I discontinued it. I do take Magnesium Glycinate in liquid form every night as it helps me sleep along with Melatonin. The one thing that has made the biggest impact on my ability to be functional is LDN( Low Dose Naltrexone). If you haven't tried it this might be an option for you? It is a compounded medication so you need a compounding pharmacy to get it. What moved me the most about your message is that you have continued to exercise despite the pain. While I am active I am not exercising the way I should and this is something I really need to follow through with. My doctor says "Movement is medicine" which I truly believe but it is easier said than done when we hurt. Reading your message has reminded me that I need to do it, I need to build a stronger body especially given that neuropathy causes balances issues. The stronger we are the more we can deal with the risk of falling. I hope that you continue to find ways to feel less pain! I agree watching movies is a great way to get things to "calm down". It is great to have this forum so we can connect with others to share our experiences!

Medical marijuana -indica
Is another option I got off the opioids and taking it at night. If it was caused by low cortisol there would be a cure or pill. There is a drug to take for low cortisol levels. Listen to the video below. A Boston research neurologist
https://m.youtube.com/watch
Dr Anne Oaklander- research sfn and peripheral neuropathy. Her daughter is also a research neurologist in neuropathy. She has a lot of articles if you google her.
Cut out sugar, processed foods and caffeine- stimulates the nerves. One of mine is pasta I wake up the next day my hands hurt really bad.

Thank you

@patriciaschulz1950
Thank you for sharing.

@nycami thank you for your info

@patriciaschulz1950 I must congratulate you for accomplishing what must have been a very arduous task. And I take issue with what the Ortho Dr said about SFN. It is a lack of small nerve endings throughout the body. I guess you didn't have the punch biopsy or you would know. It isn't a lack of cortisol. It could happen at the same time, I guess, but unrelated. I have had the biopsy, have SFN but no pain. That is a nightmare I have been spared.

The neuromuscular doctor at Cleveland Clinic - said we could do the punch biopsy but it wouldn’t change my outcome. Again no treatment I was told except manage as I have with my routine or try another antidepressant. Discouraging. I wonder why our pharmaceutical companies have not come up with a cortisol injection or pill. I was told by neurosurgeon and neuromuscular that SFN is lack of cortisol. This has been a long journey. I take one day at a time- pain is chronic. Today I woke up at a level 5/6 discouraged again.

I have been dealing with chronic sfn for 15 plus years. I’ve had all the testing biopsies, qsart, etc. prior to the onset I was on Cymbalta for years for depression and fibromyalgia. It made absolutely no difference in my sfn. I continued to get worse as it spread from my feet to my legs to my waist and my arms and hands. It took me about a year to ween off the Cymbalta because it was useless. I’ve tried everything. Absolutely everything in medicine and holistic therapy. Currently I’m in tramadol and lorazepam with lidocaine patches for pain in other areas. I have severe osteoporosis and have not taken anything for that because of so many other health issues I have not dove into the world of that nightmare yet. Reason I bring it up is I too would like to exercise more but I’m limited because of the osteoporosis in what I can do. Walking around the house and cleaning is not enough movement but when I try to do more my pain gets worse. The burning that is. I wear loose clothing and inside out when I go to bed so the seams don’t irritate me. Honestly ice packs and tv are what works for me. The lorazepam helps tremendously it calms me but unfortunately I can’t take it all day long. But resting watching tv takes my mind off it. The second I turn the tv off the internal throbbing that’s a constant gets louder and the burning more noticeable. I don’t agree it’s cortisol and as someone else suggested check out Anne Louis Oaklander. There are some companies doing research that’s in later phases I believe Sangamo is one of them. We just have to hope someone will figure out a way to help all of us. Good luck!

I was diagnosed with small fiber neuropathy after a QSART test and TST and blood test looking for the cause. I have almost nonexistent B1 in my body my B2 deficiency is idiopathic We added B1 and my foot pain has completely disappeared My next SFN issue was no feeling on my skin. I dropped the curling iron on my leg while getting dressed. I looked down expecting to scream in agony instead the reaction was oh / I can’t believe I dropped (if I hadn’t known i dropped it I would NOT have known. A 3” burn big inflation. It was absolutely scary to know I didn’t feel the burn. Neurologist told me it was result of length dependent SFN. She researched and I started on nortriptyline 10 MG capsule. Low amount due to my weight. I know it’s working. No more foot or leg issues. It’s been 18 months since the incident. I also was squatting in the kitchen, putting the pots and pans under the stove top and was putting a pan underneath the stove top. I didn’t realize it was not cooled drop it and my leg completely. Looks like a bottom the pan boy did I feel it!! Again for me the nortriptyline works. I’ve not been told anything about cortisol (I did check my results from a December blood test and mine is smack in the middle of the parameters , which is good
Not sure if this helps
Added to say I refused the Gabapentin due to prior reactions.