Connect
← Return to Small Fiber Neuropathy
Discussion
Comment receiving replies
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.
Replies to "Hi. I have SFN symptoms as well. I've had all the tests at Mayo, over a..."
@nrivers
I love red wine but have read alcohol is not good for neuropathy so I now avoid it. It is a toxin for your nerves.
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?
Connect
Greetings @nrivers. It is nice to see you posting on Connect again. My path through the testing and evaluation was also completed at Mayo. My medication path seems to be similar to yours, although I have not used Novocain for numbness and shooting pains. Your post is the first time I have seen Novacain mentioned. Gabapentin was my only resource from the initial diagnosis 11 years ago. I have given up on Gabapentin and replaced it with medical cannabis plus ibuprofen.
I noticed your mention of the pain rehab clinic. It just might be helpful for you to meet @rwinney, who has completed the life-changing experience and continues to support the PRC as well as holding a mentorship for Chronic pain here on Connect.
May you be safe, protected and free from inner and outer harm.
Chris