Living with Neuropathy - Welcome to the group

Talk to your doctor about vitamin B injections, pills did nothing, injections changed my life. My PN causes deep pain and it'ss similar to having a bad muscle cramp deep into the bone lasting for hours, gabapentin provided some help. Vitamin B injections made that pain more tolerable and pain meds are rarely used. The Mayo Clinic is having research studing on vitamin B and PN. You owe it to yourself to try 2 or 3 injections, there are no side effects even if your vitamin B is too high, worst case scenario is it doesn't work. Don't take no for answer.

Wow! I am receiving some great information. Thank you. I will explore Vit B injections. I have a sports medicine Dr. I can see if he would be willing and I have other Dr I can inquire about the Vit B shots.

Hello everybody! I am at my wits end. You can call me DrP64 if you don't mind. I retired with 23 years military svc. Even though I use the VA I have also opted to use community care services where I can seek medical care. I deployed multiple times overseas and on my last tour recieved a serious crushing injury to my spine. For the longest time the VA conflate my spinal injury to the peripheral neuropathy. I am not even boarder line diabetic the pain showed up one day 4 years ago and has never left but gotten worse where in the last 6 months it has permanently spread to my hands and fingers. It took 3 back surgeries in 2 years to finally find a surgeon to fix the back issues that was in March this year and has worked great for the problems it was causing but now the neuropathy seems to have picked up a step as like today unable to get out of bed and walk. Feet are killing me and trying to stand my knees are very weak. My right knee is a full replacement just so you know. My hands struggle to function to push me up. Some big name medical hospitals want to put a back stimulator in but I'm not convinced that it will do anything for my legs and hands and have not been shown any data to back up any type of success rate so not sold on any of that yet. I am on morphine 3X a day as well as gabapentin and all I get is a slight numbness of the pain no real relief. No one has given me anything as to how this disease progresses or anything besides the stimulator as a treatment. The pain has gotten me extremely depressed at times because it makes any type of life style impossible. Please I am in southren Virginia give me some kind of direction and information on helping me handle this disease. Thank You Sincerely

Hello DrP64 @painfully64, Welcome to Connect. Sorry to hear you are struggling with the neuropathy pain progressing. I know it can be pretty distressing worrying about the progression especially when you have so much pain with the neuropathy. I also have neuropathy but don't have any pain with it, just the numbness and some tingling. I shared my story in another discussion here: https://connect.mayoclinic.org/comment/310341/. It is good to be concerned and question treatments. Spinal cord stimulators have helped some people while others not so much and they are not without risks. My best suggestion is to do what you are doing now, searching for what helps the pain and learning as much as you can about your condition.

The Foundation for Peripheral Neuropathy has a lot of good information on complementary and alternative treatment, as well as video resources to help you learn more about neuropathy - https://www.foundationforpn.org/living-well/.

Have you done any research on alternative or complementary treatments that might provide pain relief?

Using non force chiropractic

I have had neuropathy in my feet for several years. It is possibly caused or complicated by lipedema, which is an inherited condition that creates fatty tissue in my arms and legs that won't go away with dieting. Compression is one way to keep it from getting worse but that only makes the neuropathy much worse so I can't do that. I have tried every pain medication the doctors could think of but I am so sensitive to side effects that I couldn't tolerate any of them. The most common side effect was that I couldn't sleep. The nerve stimulator only made things more painful. The doctors have nothing else for me to try. I would like to hear what has helped others and what new treatments are coming in the future. My pain is pretty severe -- I can barely keep shoes on or walk or stand for long. I use ice a few times a day and lidocaine cream at night. How do others cope?

Hello @lgkent, Welcome to Connect. I also have lymphedema in my legs which does make the neuropathy worse but I only have numbness with my neuropathy and no real pain so I know it has to be difficult for you. I shared my neuropathy story and what has helped me in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Coping can be difficult for a lot of us with neuropathy. Here's a discussion that might be helpful:
--- Acceptance: Anyone have difficulty accepting new limitations daily?: https://connect.mayoclinic.org/discussion/acceptance/.

I think it's great that you have taken the first step in learning more about treatments and what has helped other members. One website that I have found extremely helpful is the Foundation for Peripheral Neuropathy. They have a lot of resources and reference information including video webinars , alternative and complementary treatments, research and more -- https://www.foundationforpn.org/living-well/.

I am able to wear compression socks to just below my knees during the day which does help with the lymphedema but makes my legs somewhat uncomfortable. Fortunately for me I don't have pain so it's just a comfort issue of having the legs squeezed all day. I do make sure I put lotion on my legs nightly to keep the skin moist to help with the nerves.

Is it difficult to control the swelling?

Have PN. Looking for pain management

Hello @tscheetah, Welcome to Connect. Pain management covers a lots of different types of treatments. The Foundation for Peripheral Neuropathy has a pretty comprehensive list of treatments including complementary and alternative treatments for neuropathy here that might be helpful - https://www.foundationforpn.org/treatments/.

There are also pain rehabilitation centers that can help people where all other treatments have not worked for them. Can you share a little more about your diagnosis and any treatments you have tried?

I have newly been diagnosed with small fiber polyneuropathy and I’m quite discouraged. I have been a very active, physically fit person, and I am disheartened by not being able to do all of the things that I have previously enjoyed due to tingling, spasms, and exhaustion. We’re still trying to figure out what caused it and what can be done. I have questions about possible medication causes. I just had an Prolia injection and have found my neuropathy has gotten much worse. Has anyone reported reactions to medications like Prolia? Also, how about the Covid vaccines? I am a strong believer in vaccinations, but really would like to know if the Covid vaccines will cause an exacerbation.