Hopeless and Discouraged, again! Seeking any advice.

I’m a Marine veteran so I learned to “suck it up” and just live with the pain. I spent 23 months in Vietnam and I was wounded three times (never figured out how to duck) so I’m familiar with pain. But I have a great support system - my wife and three daughters. The tingling in my feet and hands is annoying and sometimes painful but I just deal with it. I guess I have a high pain threshold. When I can no longer drive it will hit me big time. The loss of independence will hurt emotionally. I hope you learn to deal with the pain. Obviously, some days are worse than others.

Hello @annregister, I'm sorry you haven't found much relief for the neuropathy pain from the different treatments you have tried. I also have small fiber PN but only with numbness. I shared my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.

The Foundation for Peripheral Neuropathy has a pretty comprehensive list of complementary and alternative treatments that might be helpful - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Have you looked into complementary or alternative treatments?

I am truly SO sorry you had to deal with that type of behavior you describe. It IS so devastating and depressing to deal with such behavior, especially when you are already feeling frustrated, angry, etc. I had a situation where it took almost ten years from the time I started having a condition that was extremely painful - and invisible to others - saw several medical/dental specialists, had multiple therapies, surgeries, etc. I worked in a hospital and yet still was not believed including by co-workers.
I am hoping you can find some true relief in your near future.

I concur and completely understand your frustration. After visiting Dr. after Dr. and having tests after tests, no one was able to tell me what was wrong. I went to one neurologist, who said to me, “what are you doing here“ I proceeded to tell him my story, my symptoms, etc., and told him that I had been to Mayo clinic three times and could not be diagnosed. He responded in a nasty tone, “I find that hard to believe.“ Needless to say, I left in tears, and when I got home, I called the office administrator for the practice and told them about the encounter and that I wanted to be transferred to a different neurologist in the practice. Where is the compassion? Where is the understanding? Where is the bedside manner? It was this new neurologist that agreed to do the EMG on me and I was diagnosed that day. There is no excuse for these doctors to treat their patients with such distain and lack of empathy. I feel your pain and anxiety.

Yes, some days are worse than others and I didn’t say a word to anyone about my pain for two years. I just put a smile on my face, worked everyday, came home and cried myself to sleep. Even my husband didn’t know the extent of my pain. I know people are there to help; I just don’t want to be a burden. However, it came to a point that the pain was so severe 24/7 that I couldn’t hide it anymore. And yes, it has killed me to not drive anymore but what has really destroyed me the most is having to walk away from teaching.

Thank you for your comment and empathy. Throughout my journey of discovery, I have lost faith and trust in the medical establishment. I realize the symptoms are subtle in the beginning, and do progress over time, but it should not take a years diagnose someone with a debilitating illness.

Think doctors have such an ego that they cannot bring themselves to tell somebody “I don’t have a clue what’s wrong with you.” I’ve had some just sit there and shake their head and no words come out and offer no suggestions for next steps.
I’m extremely disappointed and discouraged. With that said, I have not given up, I will keep searching for an answer to relieve my pain and suffering. My list of therapies and doctors and tests are long but I’m willing to try anything to see if it helps.

I concur and completely understand your frustration. After visiting Dr. after Dr. and having tests after tests, no one was able to tell me what was wrong. I went to one neurologist, who said to me, “what are you doing here“ I proceeded to tell him my story, my symptoms, etc., and told him that I had been to Mayo clinic three times and could not be diagnosed. He responded in a nasty tone, “I find that hard to believe.“ Needless to say, I left in tears, and when I got home, I called the office administrator for the practice and told them about the encounter and that I wanted to be transferred to a different neurologist in the practice. Where is the compassion? Where is the understanding? Where is the bedside manner? It was this new neurologist that agreed to do the EMG on me and I was diagnosed that day. There is no excuse for these doctors to treat their patients with such distain and lack of empathy. I feel your pain and anxiety.

Prescription Medicinal Marijuana (Texas) which is CBD Oil with Turpines and THC, has worked wonders for me. It took 2 months to slowly reduce the tingling and burning of neuropathy in my feet to now almost none at all. I also have seen wonderful improvement with arthritis discomfort, and IBS.

I tried full spectrum CBD myself, with small(5mg) max thc gummy per day. Never helped neuropathy, but I didn't give it 2 months either.