Neuropathy

I can sym0athize with you because I have some of the same symptoms as you and it’s no fun.
I also was on Gabapentin and I don’t feel like it helped me either, as was other drugs like Cymbalta in the past.
I now take Tramadol and ibuprofen for my nerve pain.
My back is fine, no vertebral issues on mri scans.

Hello Judy @judyeccles, I would like to add my welcome along with @harley22 and others. So sorry to hear you haven't found much relief for treating the pain. You mentioned having a fractured disc at L2. You may find it helpful to scan through the other neuropathy discussions to learn what helps. Here's a search link with the list of discussions - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

Do the doctors think a compressed nerve may be causing your pain symptoms?

Thank you for your response. I’m happy you have found a duo of drugs that can help you. Hopefully in the future they will know more about neuropathy to help with a more natural and healthy way. The scrambler is supposed to work but Insurance doesn’t cover and very expensive.
Keep on healing!

Hi John,
Thank you for your response!
I appreciate your feedback and the link. I will get on it.
The Dr.s never have mentioned that my L2 fracture may have anything to do with my neuropathy, although I have always suspected so with doing research on nerves and such. I have just heard several times from Dr.s that they really don’t know much about Neuropathy.

Hello Judy (@judyeccles)

Welcome to the Forum!

I was diagnosed in the summer of 2022. For quite some time I thought as you say ("I have just heard several times from Dr.s that they really don’t know much about Neuropathy") and felt resentment. After a while, however, I came apprecaite it when a doctor would say, "Ray, I just don't know." Those are the doctors, for their honesty, I've kept as keepers.

However, I had other doctors who could never seem to summon up the wherewithal to be that honest. Those are the doctors, for their evasiveness, with whom I've long since cut ties.

Again, welcome to the Forum! I knew nothing about my condition when I first arrived. Since then, I've learned a lot. And that has given me considerable peace of mind. Pull up a comfy chair and make yourself at home.

Cheers!
Ray (@ray666)

Thank you so much Ray for your welcome and wisdom.
I really appreciate it.

Hi Judy
Welcome from this Judy:) (how DO they put the smiley faces on here?)
Your doctor is correct that they don't know much about this damn "thing" that so many of us have. I don't know if it's because all the research has been focused on cancer and no research money for anything else? But, that's another discussion.
I'm in my mid 80's and knew something very unpleasant was taking over my body when I was around 75. I never, to this day, have been given any tests to diagnose what I have. But, reading everything I could find told me that I had the big N! It looks like there are some ways to actually make a determination now....about time!

All I can tell you for almost 15 years of trying one thing after another for relief is that I still get really tough days. REALLY tough days! I decided long ago that this was something that I had and I had to figure out how to live with it and make the best of it." Judys" are strong, tough ladies! Somehow that goes with the name, my mother used to say.
Read everything you can find about Neuropathy. This Forum is the best place to start. See what makes sense in your case for what YOU are going through and remember to spend some time each day in stress management.

@judyeccles
How did you fracture your L2 vertebrae? Did you read through your imaging reports (did you have MRI and X-rays showing the fracture)? What about your disc and surrounding soft tissues, spinal cord, nerve roots, nerves, etc.? You could be experiencing nerve pain from your lower back to your feet from your damage at L2. Did you see an orthopedic spine specialist?

I have spine issues and neuropathy. Small fiber nerve pain can be helped by taking alpha Lipoic acid and Acetyl l carnitine supplements and capsaicin nerve pain creams. Magnesium helps calm nerves, too.

Hi Judy! I started my “idiopathic” journey a little north of you in Little River SC. My medical system in that area referred all special cases to MUSC, and making that long trip while needing a wheelchair was quite the hardship and required an overnight stay because of the distance demands on us. We also took a referral to Duke since we believed it might know a little more and was as equally hard to travel to as MUSC. Long story short: both provided what I’m learning are standard tests and their plans of treatment were the same… to see them every 6 months and watch and see if it gets worse, and if it did, they’ll think of next steps.

My local Neurologist then had prescribed Gabapentin and that’s all I take today. It helps keep the pain in check from my PN and takes the edge off the severe coldness or warmth I would often get in my feet & hands. It’s not a cure and it doesn’t do much for numbness or tingling. I’ve learned to make sure I keep on schedule because missing a dose increases the possibility of those symptoms to return and can take a few cycles to get the medication working at an even keel again.

I decided back then that continuing to go to the medical university hospitals was too much of a travel and financial hardship on my family for a “wait & see” approach and no treatment plan. I decided to use my local Neurologist to do that monitoring and would save the travel back to the distant institutions if I was to get worse. I felt I got better bedside manner with my local Neurologist too, and more of the direct “I don’t know” and partnership that @ray666 describes.

What helped me first was my will to NOT get worse because I wasn’t convinced there’d be a medical solution by the specialists if I did, and then we’d continuing watching to see if I would keep declining. I wanted a plan to maintain or improve during the wait, not get worse! I wanted to get out of the wheelchair. Then I realized how great of a partnership I had (and needed) with my PCP who kept me on track by listening and managing my total healthcare needs. Along with my Neurologist, they made sure I had open access to the Physical and Occupational therapy. I needed to strengthen and adapt to my new limitations. I’m happy to say I was out of the wheelchair in 6 months. I can only walk/waddle short distances and keep my walker and cane on hand for obstacles (steps, curbs, need to carry things in/on). I can walk stores and around sports venues and a few city blocks. I’m handicapped but I can drive!

It’s been 8 years since Little River. Over that time I’ve had to relocate a few times, which meant getting new partnerships with good, supportive PCPs and a Neurologist. I’ve accepted I don’t have a clear diagnosis, cause, or a cure. I’ve accepted that I’ll never run, bike, or play pickleball again. But I’m grateful for what I can do, and call for PT appointments as needed to keep me in hopes of not regressing with this thing. I’m proud to say I d never gotten worse to feel the need to seek out a medical university vs the local Neurologists I’ve had.

I’ve now had to move back to SC, and am closer to Charleston. I found a great PCP and a local Neurologist and know MUSC is still there if I get worse. The greatest tool of all I’ve had is this Mayo Connect forum. Real people with real experience with real suggestions on things to try that might work for us to make the best of our new challenges and getting the most out of our lives!