New member - 3 years with neuropathy, looking for support

Hi Mike, I don't know what will work for you but I can tell you a little about my journey with neuropathy. Ive had for 8 years; although now it is mostly managed. I have never found the cause. I have small/single fiber neuropathy that was diagnosed by my foot doctor. I also went to a neurologist for further testing where I didn't find out anything more. In the last 3 years, I have researched and changed my diet as I read that carbs and sugar make it worse. I have also forced myself to walk a lot more even when my feet hurt. I joined a walking meetup group which helped with accountability. I had surgery for a separate issue which then put me on a low fat diet. In the process I lost 50 pounds. Walking and weight loss were the big treatments for me. I never had diabetes or pre diabetes. Only thing maybe is that I had thyroid cancer 20 years ago so could be cumulative effects of medication or radiation treatment that i had. It could also be the additives from all the bad food choices I used to make. Now I only eat whole foods, vegetables, chicken. I find if I become a couch potato or get the flu and am inactive for days/weeks the neuropathy comes back. It is good to find the underlying cause but even if you don't find it (many of us don't), there are other things you can do to get relief. I wish you the best and hope you get some relief.

I need help!! My primary said I don't have PN but never tested anything. She told me I have radiculopathy and never did anything. No referrals or tests. Could a podiatrist help me with foot pain, numbness, cold feet, tingling, hard to find shoes that work. I've had these symptoms for 3+ years and will try anything to treat this. Thanks.

So far I’ve had some success with Gabapentin, but it doesn’t solve the problem completely. I too would like some advice on how to manage neuropathy in my feet.

Thank you all so much for the warm welcome and sharing your experiences! This is exactly what I was hoping to find.

@lindabyrne38 - Your story gives me a lot of hope! 8 years and mostly managed now - that's incredible. I've been pretty sedentary since retiring, so your point about walking really hits home. I used to be on my feet all day as an electrician, but now I spend too much time in my recliner. The diet changes you mentioned are interesting too. I'll admit my eating habits haven't been great since retirement. Did you notice the improvement gradually or was there a turning point?

@daisy22 - I feel for you! It's frustrating when you're not getting the help you need. Have you considered getting a second opinion? A podiatrist might be worth trying, especially for the foot-specific symptoms. My neurologist was the one who diagnosed me, but it took a few visits to get there.

@elainestewart48 - I'm on gabapentin too (300mg twice daily). Like you said, it helps but doesn't solve everything. The burning is still there, especially at night. Have you tried any other approaches alongside the medication?

It's so encouraging to connect with people who truly understand what this is like. Looking forward to learning more from this community!

@lindabyrne38 You have done well in your neuropathy journey. Your walking experience is very interesting. The bottoms of my feet are so painful that walking becomes very tortuous. If I knew that more walking would help, I would walk until my feet told me to stop, then repeat the next day. When I do walk about 4000 steps in a day, the next day is even more painful overall(my neuropathy causes pain from my lower back down to the tips of my toes, usually a seven to an eight daily). I guess my real question is, after you started walking, was it a challenge to continue? Did continuing ultimately help with the pain in your feet? I hope I haven't rambled to much.

You would really benefit from a good neurologist who would do EMG testing and also refer you for vascular ultrasound to rule out vascular issues. Probably you will end up like most of us on this site...no cause, no treatment, no prognosis. It is a very debilitating disease with unpredictable outcomes. Lots of scam providers of equipment, supplements, etc. Mostly nothing is that helpful. there is a lot of research going on because Big Pharm knows they would make a killing if a treatment were identified. Keep moving, especially impact; walking aerobics, zumba, cardio...Make sure your Vitamin B 6 is not out of range. Ask neurologist about the other meds you take. Statins can cause neuropathy. So can Hydroxychloroquine if you take, like I did for years, for auto immune disease. Many of us also have auto immune conditions; another morass of poor or no treatment and/or diagnoses. I stopped both of those meds. I wish i could be more encouraging. Maintain your best health for eating, exercise and routine blood work. A rheumatologist might also be helpful. They seem to be more sympathetic to their patients and helping them. Neurologists tend to be busy with Parkinsons, Alzheimers and ALS patients.

You need to be seen by a neurologist, a podiatrist doesn't treat or test patients with possible neuropathy symptoms. It took 3 neurologists almost 10 years to finally conclude that I have Idiopathic Poly Neuropathy in my feet.

You need to increase your dosage of gabapentin if 600mg a day isn't helping enough with the pain. I've been dealing with neuropathy in my feet for over a decade now, and am currently taking 3600mg a day. It dulls the pain enough to be tolerable, but it'll never go away.

All of these comments are so interesting especially how doctors don’t seem to believe or just brush us off.
I have chemo induced neuropathy- too bad my oncologist didn’t believe me when I told her I was having symptoms. It has been eight years now but I’ll never give up trying to find a cure or something that helps. I’m afraid of stopping the statin. I can walk 2 miles I exercise on our stationary bike 30 minutes and weight machine. It helps me mentally. I watch what I eat and trying to be a vegetarian. I eat fish though.
I read where pharmaceutical companies are trying to develop medications that would block the pain signals from going to the brain. Wouldn’t that be wonderful!

I wanted to follow up and thank everyone again for all the incredible advice and support. Reading through all your experiences has been so helpful.

@lindabyrne38 - I've started walking more based on your suggestion! Just short distances around the neighborhood for now, but you're right that it does seem to help a bit. The diet changes you mentioned really got me thinking too.

@moorethrpy - Your point about vitamin B6 levels was interesting. It made me realize I should probably get my vitamin levels checked. My doctor mentioned that some vitamins and supplements might help with nerve health, so I've been doing some research on that lately.

@crissma - I'm so sorry about the chemo-induced neuropathy. It's frustrating when doctors don't take our symptoms seriously at first. Your positive attitude about exercise and diet is inspiring.

Since retiring, I've had more time to really dig into research about neuropathy treatments. I've been reading about various vitamins and natural supplements that might support nerve health. Has anyone here tried any specific vitamins or supplements that seemed to help? I'm particularly curious about B-complex vitamins, alpha-lipoic acid, and some of the newer nerve support formulas I've been reading about.

I know everyone's different, but I'm trying to be proactive about this since the gabapentin alone isn't cutting it anymore. My doctor is supportive of me exploring additional options alongside the medication.

Thanks again for being such a welcoming and knowledgeable community!