Living with Neuropathy - Welcome to the group

Hello, I have just been diagnosed with small fiber neuropathy and still going through testing to determine the cause. My life drastically changed after returning from a run back in November. My foot felt numb and then the next morning I had burning pin in my buttocks and across my shoulder blade area. The burning numbing pain has spread through by entire body. I am on gabapentin 300 mg 3x a day. When I increase to 600 mg the bloating is beyond painful. Learning to deal with not being able to wear most clothing as it causes such pain, especially a bra, socks and underwear. I am lucky for the time that I am working from home, but if called back in, I am not sure what I will do. Sitting in the car for a hour commute just will not be doable let alone sitting at desk. At home I have a standing desk and can frequently change positions and wear a bathrobe. Learning to cope has been an adjustment as I was extremely active - running 3 to 5 miles, biking 10 to 20 miles on week. Now walking is painful on my feet. I find that mornings our better. Any information anyone would like to share would be helpful and appreciated!

Thank you for such a warm welcome, I appreciate it. This disease has progressed for me so that it frightens me. I am hopeful to find any treatments that are new or helpful. I hope to contribute in any way I can, if just to listen and commiserate with others.

Beth - I have been fighting my neuropathy for 50 years. Typically, it waxes and wanes for younger people, but it has hit me hard the last ten years. Five years ago, as I was googling the disease and treatments, I came across a study done in Europe that stated success with IVIG. Success defined as less pain and slows the disease down. I showed it to my neurologist and he checked into Medicare coverage. Yes, Medicare covers it. But, very expensive. I have Medicare/TriCare for Life and that covers everything. But a friend here only has Medicare and she cannot afford to have the treatment every month. I spend six hours for two consecutive days each month receiving the treatment at an infusion center. Knocks the pain down from 9+ to bearable 4 to 6. After three weeks, pain starts to ramp up again, which is common based upon my research.
Nerve diseases are extremely tough to treat. That’s the verdict from my five neurologists. Think MS - a nerve disease that gets a lot of money for research. Nothing yet. Treat the pain. I used to be a long distant cyclist, a racket ball player, and a runner. Three years ago I was down to walking several miles per day. Lost that. But I still have my arms and I took up swimming. Legs don’t work in the pool, so I use those neoprene swim gloves to compensate. Park my walker and slip into the pool. Looks funny with my big gloves and my Pull Buoy between my legs, but it works. More exercise = better sleep = less meds at night.

Eric

Beth - I have been fighting my neuropathy for 50 years. Typically, it waxes and wanes for younger people, but it has hit me hard the last ten years. Five years ago, as I was googling the disease and treatments, I came across a study done in Europe that stated success with IVIG. Success defined as less pain and slows the disease down. I showed it to my neurologist and he checked into Medicare coverage. Yes, Medicare covers it. But, very expensive. I have Medicare/TriCare for Life and that covers everything. But a friend here only has Medicare and she cannot afford to have the treatment every month. I spend six hours for two consecutive days each month receiving the treatment at an infusion center. Knocks the pain down from 9+ to bearable 4 to 6. After three weeks, pain starts to ramp up again, which is common based upon my research.
Nerve diseases are extremely tough to treat. That’s the verdict from my five neurologists. Think MS - a nerve disease that gets a lot of money for research. Nothing yet. Treat the pain. I used to be a long distant cyclist, a racket ball player, and a runner. Three years ago I was down to walking several miles per day. Lost that. But I still have my arms and I took up swimming. Legs don’t work in the pool, so I use those neoprene swim gloves to compensate. Park my walker and slip into the pool. Looks funny with my big gloves and my Pull Buoy between my legs, but it works. More exercise = better sleep = less meds at night.

Eric

@ericd47, I would like to add my welcome along with @helennicola and other members. Thanks for sharing your story with us. You have certainly had a long journey with pain and neuropathy. I'm glad to hear the pain is manageable and you have a plan you are working on. You might also be interested in reading what other members have shared in the following discussion.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing how you found Connect?

Hi John sorry for interrupting discussion. Feel silly but how do I log myself iback in as need to ask u important questions. Thanks

@poppsy1, If you can post on Connect like you did here you are already logged into Connect. You just need to go to the bottom of a discussion and type your question and if it's to a specific member, make sure you type their member name like I did so that you would receive an email notification for this post. You can also go to the bottom of any Connect page and click the link Contact Mayo Clinic Connect and send a message to a moderator. The link is located in the footer of the page in the left most column.