Peripheral Neuropathy - Anyone else?

Very much appreciate your advice and comments, Lagrange. My pain specialist has yet to learn the underlying cause of the neuropathy even though I've been seeing him for months. He appeared too busy referring me on to three other pain-in-the who couldn't comprehend my pain nor gave me needed advice. I did get a feather stroke down the leg, and was asked if it hurt??

I believe the peripheral neuropathy and CRPS occurred after a revision surgery by an orthopedic surgeon who undoubtedly damaged nerves and tissue from 5th metatarsal along lateral side. This coupled with my 2 autoimmune diseases along with foot arthritis was a disaster in the making. You gave a very helpful comment about a neurologist specializing in neuropathy, and in hindsight, that should have been my first choice. But I had no guidance nor recommendations. I will try the thin socks, epsom salts, and alpha lipoic acid Thanks again for your encouragement.

I went food shopping today, and the pain was so great, could barely walk. The entire foot feels broken, and can barely think. It's getting so bad, I don't want to go out.
The pain specialist has me on Pregabalin, building up to higher doses, but that only stops the pain temporarily. Do they not have any other solution? He knew I had CRPS and neuropathy months ago, and this long delay only worsened my condition to the point of my being permanently crippled.
Why can't I be helped? Lidocaine patches are a joke, and haven't even been referred to a specialist who can insert spinal cord stimulator device. This has ruined my life and independence. At my wit's end.

For the treatment of Peripheral Neuropathy, has anyone experienced collaborative communication and healthcare in a healthcare system or organization.

Collaboration between Primary Care Physicians, Neurologists, Dietitians including supplements, and others as needed?

I went food shopping today, and the pain was so great, could barely walk. The entire foot feels broken, and can barely think. It's getting so bad, I don't want to go out.
The pain specialist has me on Pregabalin, building up to higher doses, but that only stops the pain temporarily. Do they not have any other solution? He knew I had CRPS and neuropathy months ago, and this long delay only worsened my condition to the point of my being permanently crippled.
Why can't I be helped? Lidocaine patches are a joke, and haven't even been referred to a specialist who can insert spinal cord stimulator device. This has ruined my life and independence. At my wit's end.

Hello @suzed, and welcome to Mayo Clinic Connect. You will notice that I have moved your post into a discussion you have shared already. You can find your post here:
- Peripheral Neuropathy - Anyone else?: https://connect.mayoclinic.org/discussion/peripheral-neuropothy/

You mention that you have yet to find a doctor to diagnose you. Have you heard about our Mayo Clinic in London location? Here is some information in the event you'd like to pursue requesting an appointment: https://www.mayoclinichealthcare.co.uk/

PN is relatively rare but increasingly less lately. I think it's because it is more frequent with age, and our senior population is growing. The baby boomers have become senior boomers. There are some very helpful posts on PN here.

See "SN in feet" on 2/19/23 by @larry4343. He linked a long, but excellent informative article on PN written by Mayo PN physicians. They recommend when doctors should prescribe alpha lipoic acid and in what amount. It's a good guide with helpful graphics. It's also great to know an actual prescription is not really needed.

@johnbishop posted very helpful links and attachments in "Small or large fiber neuropathy-What percentage is idiopathic" on 3/5/23 and in "Ideopathic Small Fiber Neuropathy Research" on 3/15/23.

Best of luck.

exercise at least a little bit every day. also do not go barefoot. slippers or shoes with some elevation. this worked for me. for hands finger exercises, stretch bend, pretend you're playing the piano

several of our patients have diabetic neuropathy. One of the first things to help and keep it from worsening is to make sure blood sugars are under control. Some of them are on neurontin which helps with pain. Daily foot checks are of utmost importance.

I understand when you say you have used a variety of creams and gels. Frustrating and expensive. I have a prescription pain cream. It is prepared by a compounding pharmacy. There are various “recipes” that your neurologist can request. It sounds like you need something to calm those nerves (Gabapentin, etc), numb the pain (lidocaine) and maybe reduce inflammation. I have a cream with three ingredients. $115 will last me six months or more. I only use it at night, on my hips, and occasionally during the day on a troublesome spot. If you haven’t tried that, you might. You can contact the pharmacy yourself, get the information on ingredients and price, then message your doctors office. They should be glad to help you.
It has to be a compounding pharmacy!