My arms hurt on the underneath side. Is that where your arms hurt?

My Neuropathy supposedly was caused by my type 2 diabetes and if not, there is no specific reason. I have tried Lyrica which was quite expensive but offered no relief. I take Gabapentin and Cymbalta but have not gotten relief. I use opiates which helped a lot the first few years but no longer seem effective. My next step will be researching medical marijuana. The last resort are two implanted devices that Medtronic manufactures, however, the Neurologist called them "last resort" options.

Hello @philio66 - I have idiopathic small fiber neuropathy in both legs and feet. Fortunately I only have the numbness and not pain that you and other folks have with your neuropathy. I've had it for 20+ years and only had the EMG and MRI tests done this past March to get a specific diagnosis. My Mayo neurologist told me that there is no drugs or topicals that will help with the numbness. He also told me to just watch it and if it gets worse let them know. Eventually he said it may affect my sensory/motor nerves and may cause vital organs to shut down. At that point I started my own research and tried to learn as much as I could - have tried most of the snake oils, essential oils and a few other treatments which have done nothing.

I found a closed Facebook group - Solutions to Peripheral Neuropathy Pain & Discomfort (https://www.facebook.com/groups/SPNPD/) which actually has a solution to the PN problem. I don't know if it will work for everyone but there are 3000+ members in the group with all different types of PN diagnosis. Basically it's multiple over the counter vitamins/supplements that help to repair damaged nerves which are the source of the pain signals being sent to the brain. There are many members who have been able to titrate off of their pain medications and just take the supplements. They recently received their 501c3 certification. There are many members with type 2 diabetes and chemo induced PN and many others. Several were bed ridden and now are completely off of their pain medications and just on the protocol by itself.

I have been taking the protocol of supplements since the first week in September and have seen results. When I started the numbness was just below the knees and it is currently just above the ankles. It doesn't sound like much but to me it is significant because it's not progressing up my legs like it was. I would recommend you check out the group and read through the new member welcome information that explains how it works then discuss the supplements with your neurologist or PCP to make sure there is nothing that would interact with any medications you are currently taking. I ran the list by my Mayo PCP who forwarded it to the Mayo pharmacist. He only had concern about one supplement but it was minor and I actually found information on the omega 3 oil dosage he was concerned about on a Mayo Clinic research topic for dosage levels used to treat specific medical issues. I am telling you all of this because I want to make sure you do your own research and be your own advocate. It is important to have a discussion with your neurologist and/or primary care doctor and have some questions ready to ask them. I am not a medical professional but what I have learned from the group is that the pain medications do zero to fix the nerve damage that is causing the pain. They only block/mask the pain signals from the nerves to make the pain go away. A lot of the drugs being used to treat PN are anti-seizure drugs (http://mayocl.in/1TKJdhs) and they do come with side affects (foggy brain being one of them when on high doses). The protocol works to repair the damaged nerves which in turn gets rid of the pain. The only caveat is if the nerves are damaged beyond repair (surgery, broken nerve fibers, crushed, etc.).

I don't know the answer but I know that you should continue to be a strong advocate and learn as much as you can about your condition.

Hoping you find an answer that works for you.

John

I have chemo induced neuropathy which began just after my 2nd taxol treatment. I finished treatment January 7, 2007 and the CIN (diagnosed by MGM at Mayo) has become progressively worse ... affecting my feet and legs from toe to groin and also the 1st joint of my fingers. I'm lucky I don't have the shooting pains, but it's difficult to walk without falling when you can't feel your feet.
I had 15 treatments of laser IV therapy and soft tissue massage last summer which helped and have kept up with the maintenance visits. I have also followed that up with PT at a very. very good facility. I can walk about 100 feet unaided and probably twice or times that far with a walking stick of trekking poles - without falling, but not necessarily without pain in my ankles and thighs. I'm hoping to get an Rx for a Rollator with a seat today so that I can handle greater distances. It really limits my mobility when I can't stand a few minute unaided to talk to someone, stand in line for groceries, a movie etc.
I have high hopes that the Rollator will let me walk farther and longer safely so that my legs get stronger and I can start doing more things including working in my 8 x 100 foot perennial garden.

Thank you for the information.

I am 9 months out of chemotherapy and neuropathy is really bad. i have no feeling in my feet and cannot tell hot from cold. any ideas for treatment?
Carol

it helps hot flashes ? At what strength? I take 300mg 3 times a day. The hot flashes have gotten horrific after being put back on prednisone for the 4th ? time started out at 20mg right away and that's where it sits. They put me back on the prednisone to try to shrink the sarcoidosis (sp)? in and around my right lung

Just as a side note I was already on Cymbalta for depression and I wonder what % of PN patients have fibro? As I have it also, hard to say how long, at least 15 years as they used to say it took 5 yrs average to reach a fibro diagnosis they seem to prefer to bump you from one spec. to another and they all say the same thing "it's all in your head" things may have improved sine I was diagnosed I hope so !

what strength ?

Have no idea what is causing mine, that is what is so frustrating. Just woke up one day and my frat would hurt when I tried. Use to walk the dog st least two miles each mofbning and loved it, no more cannot even. Find shoes I can where, they only hurt when walking which seems so strange.
Thank God for flip flops because iswhat allow me to walk, now after a year I am now getting terrible right hand pain which according all my test I do not have “. Have an appointment with Dr Hoke at Johns Hopkins in September and hope he can give some insight into what I am dealing with.