Looking to connect with people who have non-diabetic neuropathy

I wish you luck, I had two back surgeries in February within two weeks. After the second surgery is when I developed the peripheral neuropathy. I have the crunching in the feet and it drives me crazy. I am just now in the past couple weeks having some of my feeling back as I was numb from the waist down. I am on gabapentin, I don't think it helps much. have also tried Lyrica. I had an ENG and nerve induction test done last week.. Waiting for my DR. to discuss that with me and he won't do it until my appt which is the 15th of this month. I am not real happy with him. I have a feeling I will be finding a neurologist. I did buy a bottle of the alpha lipoic acid. Did your dr tell you what amt to take. I can't remember what my bottle says but I have only taken it a couple times. I wish you lots of luck. !!

Well good luck. The brand of ALA really makes a difference. I now use Pure Encapsulations which unfortunately is very expensive but has no fillers and was far superior to the cheaper brand I started with.

I now take 2 pills a day, each is 600 mg. But to get rid of all the pain, I was taking 4 pills a day (2400 mg is max recommended). When I lost a lot of weight, it started making me nauseus. I was slowly able to reduce the amount to 2 a day. But, you need to take it every day.

My neurologist said if I have a lot of pain from my next cancer drug, he'll add gabapentin to the Alpha Lipoic Acid since the 2 work differently. Hope you start feeling better.

@tpea, Welcome to Connect. As you noted, this forum is committed to sharing experiences in order to help ourselves with the feedback or help others who are looking for possible answers to their neuropathy issues. Let me see where I can start as that post you referenced may be a little dated. As mentors, we are also patients and experience periods of condition and symptom changes that then require medication and treatment changes.

So....as of today, at my annual Medicare appointment with my PCP, here is what is working or not working for me. I have about 7 years of neuropathy "experience" as that was when the skin biopsy test returned a diagnosis of SFN (small fiber neuropathy). My symptoms have included fire in my legs at 5 a.m. for about six months, abdomen pain and burning for another six months, numbness and tingling in my hands and head, numbness and freezing cold feet, plus added realities pre and post-orthopedic surgeries, e.g. neck fusions, TKR's both knees, hand and thumb fixes on both sides, and some other evidence of aging that needed attention.

My neuropathy symptoms have been pain, numbness, tingling, freezing, burning, and one of the worst......the neuropathic itch. I am not a fan of medications and have struggled for years to find treatments that really help. As of today, I will continue to control pain with medical cannabis. I only use tinctures and topicals. I do my own prescribing and evaluating of varieties of strains, dosage amounts and frequency. I began sleep aids with Nortriptyline (which was very helpful for sleep and depression) and tried Gabapentin. I have tapered down to 600 mg at night for my tingling hands. Now that the topicals are working well, I will taper off the last two pills in the next few months.

There is a "comes with" for neuropathy and that is anxiety. Anxiety about unanswered questions, unheard-of symptoms, and fear created more pain which created more anxiety, etc. I exchanged the nighttime Nortriptyline for morning Duloxetine. The starting dose three years ago was 30 mg. I now take 120 mg every morning and my day begins well as long as I remember my anti-neuropathic itch topicals and OTC anti-itch medication.

I hope that is not confusing. And I forgot to include a two year journey with compounded lidocaine topicals that my neurologist continuted to modify as needed. When I found both an acute and chronic pain topical cannabis option, I let go of the lidocaine.

Exercise and activity commitments were next and let me just say that Mindfulness is a practice worth learning. Focused meditation can also help. I do Yoga stretches every day and try to walk a couple of miles several days a week. I started at 3-4 miles and am now at 1-2. That's o.k. because I have added balance and stability exercises to prevent falls.

That's about it at this point. It is also very important to remain active....hobbies, volunteering, game playing, pets, family visits, and outings, and most important consistently....MFR (myofascial release therapy). I have two sessions a week to keep the fascia from becoming so restricted that any movement is painful.

So there you go. And just know that it is folks like you who create value in my life. I enjoy meeting other members like you on Connect and helping if I can. So....let me know how this sounds to you. What else would help at this point?

Where do you think you would like to begin?

May you be free of suffering and the causes of suffering.
Chris

Update: I stopped taking Lyrica after switching to Tegretol, a seizure medicine I had taken previously for 25 years. My neurologist agreed that it’s not a first-line neuropathy drug, but there was no reason not to try it. I still have pain, but it doesn’t burn as much, just dull. We increased my dose yesterday from 200 mg twice a day, to 300 mg twice a day. Off Lyrica, my mind has cleared up, and I don’t feel like I’m going to have a car accident. I’m starting to feel like myself mentally.
Also, I’ve been referred to the Dysautonomia Clinic in Birmingham, Al.. I’m lucky to live less than 2 hours away from UAB. I will have testing and treatment there for all these frustrating autonomic symptoms, which seem to constantly get worse.

I agree. I’m on Gabapentin and Cymbalta. My second dose causes horrible side effects. I video them to show my doctor.

Did you take Gabapentin and Cymbalta? Is Tegretol better then Gabapentin? I’m on Keppra and it seems Gabapentin is not working or the Cymbalta.

So I have length-dependent small fiber poly neuropathy. This is a recent diagnosis. Previously I was treated for fibromyalgia. I took Gabapentin several times over the past seven years, but it made me so drowsy. In researching SFN, I saw an article that referenced Tegretol as a treatment for a particular diagnosis. Coincidentally I had been on Tegretol for 25+ years for seizures. I stopped taking it in 2014, and my pain, weakness, fatigue started within 6 months. For that reason, we are resuming Tegretol. It’s not a first choice for neuropathy because other drugs have fewer side effects.

Leonard, What kind of meds and vitamins are you using?

@bcool123
I have never used anything other than Gabapentin and Lyrica which my Neurologist gave in hopes they would help with seizures and Neuropathy but they didn't help either problem. Others are far more knowledgable with vitamin regimes than I am.
Good luck,
Jake

@julbpat
Since you were on Tegratol so long did your physician say your seizure medication was responsible for the Neuropathy?
Jake