Let’s have a chat about what if anything works to improve your life wi

I wish that I could post something that has helped me. I have severe, chronic, idiopathic PE like so many. It just came on quickly about five or six months ago. I have been dealing with pain since 2016 when I fell hard on my back and butt. A year and a half later I finally found relief when a DO examined me and told me to see a certain neurologist. That doc spent a good hour and a half with me. Finally, she prescribed Tramadol, Gabapentin, and Diazepam. My pain dropped from a seven to a two. A year later, I had a spinal cord stimulator implanted. Between that and the meds, to my life returned almost normal. Let me note...in between all this, I had two orthopedic surgeons tell me that there was nothing else that could be done. Just learn to live with it. I have since learned to be my own best advocate.
I was living a pretty much normal life until 2021 when most of the pain returned over a period of several months. In the four years since, I have had a pain pump implanted, had my meds increased, had new meds added for an assortment of ailments. I have had scrambler therapy which did not help at all. All I can tell you is to keep on searching. That's what gives us hope. I suppose that, at some point, we may have to give up and learn to live with what life has given us. I have lifted my pain the my Lord, Jesus Christ, but His answer, so far, has been "no". Lord, hear my prayer, by your mercy.

Great question/topic! With my initial diagnosis of idiopathic peripheral neuropathy I'm not sure what was more frightening for me, the diagnosis or the Neurologist's answer to my question "Now what can I do!?" His answer was basically "nothing"! I have always been prepared prior to going to all doctor appointments. Years ago, while assisting my father through a deadly cancer diagnosis, I swore I would NEVER just sit there and do nothing but listen. Most of my father's generation believed that doctors were god-like and you never questioned them. They are not - They are working for you to make you better! If not, fire them!

When I got home I spent hours researching all of the reports (Mayo Clinic, Cleveland Clinic, Harvard Medical etc. etc.). I contacted my Neurologist's office the next day, spoke to his assistant telling her I had questions about my diagnosis. I received a "patient portal" message from the assistant the next day who said "Dr. xxxx said to check back in 12 months to see how you are doing". Screw him was my first thought and then I began doing more research. And searching for a different Neurologist!

What I have learned in the past 4 months.
1. Mayo Clinic sent me a form letter saying, "no interest in seeing you". These are my words, not their's, but it was basically my interpretation of their response.
2. HOWEVER, I found this fantastic site - connect.mayoclinic.org!! I have learned so much from this site in the past few months that has pointed me to other sites, medications, suggestions etc. that have helped me both physically and mentally! I have met so many wonderful people who are suffering but are doing something about it! It has led me to new areas of information and research that has been so helpful. Granted there is some advice you shouldn't follow up on, but you can be the judge of that!
3. Read, research, make sure you vet (examine, evaluate) the physicians you visit and make sure they make time for you, answer your questions and care about your well-being! If not, kick them to the curb!
4. If you are physically able, MOVE! Walk, exercise, move your arms and legs, dance to your favorite songs (fast & slow) anything that gets you moving is good!
5. Seek positivity in your life - As PitBull once said "Everyday above ground is a good day!!"
Love you all!! Have a great day!
Mike

My Neurologist just started Qutenza Patch treatment on me. They are not fun treatments. After my first one I have a little bit of relief. He told me the second and third treatments will help a lot more. I'm hoping it works. So far it seems yo help a little so I'm hopeful.

Thank you for your detailed response. Hopefully we can continue to learn from others.

Thank you for the details. Let’s keep fighting the good fight.

Good morning, rybren (@rybren)

Whathas helped me, in a word, is simplicity. I was diagnosed in the summer of 2022 with idiopathic polyneuropathy, which, over te months, I've been able to refine down to idiopathic large-fiber (no pain, but lots of balance issues), sensory-predominant polyneuropathy. In those early months, I did what many of us do: ran around town meeting with different kinds of doctors, trying all sorts of "tips" on improving my balance, collecting doctors' prescriptions like they were penny candy, searching the Web, giving every YouTube site promising "Five Ways to Fix Your Balance" a fair chance, etc., etc., etc. In the end, I cried out "Whoa!" I've cut back to only one neurologist (the one who makes the most sense), reduce the number of my prescriptions and supplements (with the neurologist and PCP's okay) to a comparative few, settled on the one balance/leg strengthening PT program that has been truly helping me, and (thanks who my partner who is a great cook 🙂 ) living on a diet of good, simple meals. That's why I say (at least for me) what has improved my life is simplicity.

My best to you, rybren. My best to all of us!
Ray (@ray666)

I was diagnosed with this damn condition in my feet about 2 years ago. The problem is, it took 3 neurologists, and 2 neurosurgeons almost a decade before someone would tell me what I already knew, there wasn't anything they could do about it. There's no cure, or real treatment, all you can do is try to treat the pain that's never going to go away. We're stuck with this until the day we die.

The worst part, none of these "specialists" offered any words of encouragement, or sympathy, or even any medications that might help. Basically I was told to just deal with it. My GP gave me my prescription for gabapentin, none of those "special" doctors.

Currently I'm taking 3600mg of gabapentin a day, 4/300mg capsules 3 times a day, and 1200mg of alpha lipoic acid, 1/600mg capsule twice a day to dull the pain in my feet. Most days it's not to bad, some days are worse than others, depending on how much time I spend with my feet elevated in my chair.

I've tried nerve blockers and CBD products with zero results. I won't waste our money on anything sold on-line or on TV, it's all a scam. Once a nerve has been damaged or died that's it, game over.

That sucks! I hear you @mrmacabre. Frustrating to say the least. Docs with no empathy for their patients should find another profession. I do believe that there are those out there that truly care about their patients. The key is to find them! I have prostate cancer and I fired my first urologist because he used me like a guinea pig! I did my research and now have a wonderful urologist who works hand in hand with me! My other specialists are similar or I wouldn't let them touch me! My neurologist who diagnosed me with IPN I fired because he offered nothing! I live in a major city/state that is known for excellent health care. Unfortunately, not everyone has that same advantage. We care. I care. Take care....

Has anyone had success from someone who offers chiropractic based treatment for neuropathy? Does your neuropathy affect the way that you walk such that you walk gimpy or with a noticeable limp?
Many years ago [maybe 35 or thereabouts] I was reaching down into a large cardboard barrel to get a scoop of chemical and felt something pull in my lower back. It was painful and I was pretty much bent over and couldn't stand up straight. When I got home I was on the couch for a couple days. Sorta feels that way now when I start to walk, it gets painful and I feel like I'm being bent over.

Does the pain ease when you get moving after a few minutes?