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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 3 days ago | Replies (6026)
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@lgkent

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?

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Replies to "I have had neuropathy in my feet for several years. It is possibly caused or complicated..."
John, Volunteer Mentor | @johnbishop | Jul 10, 2023

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?

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