Small Fiber Neuropathy; worsening pain

I am 70 and I started having the same symptoms as you. I am sorry your so young and suffering so. I have pain all day also. I take 300 mg Gabapentin 4 times a day. I smoke THC for pain and anxiety and it helps me quite a bit. It is not for everyone though. Some people use CBD or a combination of THC and CBD. I have to wait 2 months to see a specialist for the first time!

Hello @scottme1, I would like to add my welcome to Connect along with @pacodennis and others. I'm so sorry to hear that you have been saddled with this condition at such a young age. My best suggestion is to learn as much as you can about your condition and the treatments. My two favorite sights for learning more about neuropathy are these two:

-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/

There are also several discussions you might find helpful:
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Neuropathy 101 - Knowledge is power?: https://connect.mayoclinic.org/discussion/neuropathy-101-knowledge-is-power/

The Foundation for Peripheral neuropathy has a good collection of complementary and alternative treatments that have helped other people with neuropathy here: https://www.foundationforpn.org/treatments/

Have you looked into any complementary or alternative treatments for your neuropathy?

Hey there Scott? Are trying Lyrica because you're diabetic? How much gabapentin did you get up to daily? John

Hi paco? I take 900 mg of gabapentin each 4 hours and it takes away about 50 -70% of my pain have you tried the max dose? I'm 71 and other the some minor kidney disease very active daily and healthy. John

Good morning @scottme1 and @pacodennis. I noticed that you mentioned that the neuropathic itch is one of your symptoms. How long have you been dealing with the "itch"? I can vouch for the trouble that it brings to SFN. @johnbishop has given you a good start on the way to build your knowledge and understanding of the condition, Knowledge is power and it has been very helpful to me as I pursued a solution to the "itch". For me, the "itch" was worse than the pain when I would have a flare.

The first medication I found helpful was a topical called "Dermeleve". My dermatologist brought me some samples after attending a national conference. It is OTC and you can find it online at http://www.dermeleve.com.
I always have a small tube in my purse "just in case".

However, 3 months ago I was approved for Dupixent and my life changed dramatically. I always felt that the neuropathic itch came from within my body not externally, This medication is a twice-a-month injection that you do yourself. It only takes a minute of your time and the results are very helpful. You can find more information at http://www.dupixent.com.

I also concur with the choice of medical cannabis for pain control and management. It is very difficult to accept the fact that there is no cure for neuropathy conditions at this time. My choices are tinctures and topicals that I have been using for 9 years. I am happy to be more explicit if that would help you.

May you be safe, protected, and free from inner and outer harm.
Chris

Hi I’ve considered medical marijuana. I have certification to get some. Can you tell me how it helps you?

I have pain in my legs, abdomen, sinus, and ears. The pain level when I wake up in the morning is about 8/9. I smoke a small bowl of a strain called "Blue Dream" and in an hour my pain level 4/5. Works every time for me. It does not get me "too" high. Just slightly. It is also relaxing, especially with different strains like "Sundae Driver".

In addition to the other helpful comments, I would encourage you to seek help at a large medical center with a SFN specialty. Although it’s an awful diagnosis we have, it’s actually great to have a firm diagnosis to work with. That part took me seven years! The actual diagnosis has opened doors for me with other specialists, and physical therapists.

Also I was able to go to an Institute for Genomic Medicine and have genetic screening done. It turned up negative, but I am certain that mine is genetic, as other family members have the same symptoms. Nothing showed up on testing, but they assured me that new genomes are being researched constantly.

Lastly, look at my post about Tegretol. I was really shocked at how it reduced my symptoms, after trying Gabapentin and Lyrica.

Hugs -

Hi, thank you for sharing your experience and I am so sorry you have so much pain. Having the same pain and sensations I use a tincture from our medical marijuana store. It takes a bit getting used to but it helps me. Also I take neurontin, but it's a bit fatiguing, but helps cut down on the pain.

Let me know how your appt goes….. I take 800 mg 4 x day gabapentin, 4- 7.5 mg Percocet, 3 klonopin…..that’s just the pain n anxiety meds. I take other meds to specifically for my other health issues, I have a bunch of no cures!!!!
Hope you feel better, have a good evening!