Living with Neuropathy - Welcome to the group

Hi @lisie, Welcome to Connect. I've have idiopathic small fiber peripheral neuropathy for 20+ years but I only have numbness and no real pain in both feet and slightly above the anklles. I shared my story earlier in a post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

It can wear you down if let it get to you. The one thing that helps me when I'm having a bad day is to try and focus on something else as hard as that might sound. Sometimes it's just looking around or outside through the window at the bird feeder and enjoying whatever is there. It sounds like your neuropathy is also idiopathic. Are you able to share a little more about your neuropathy diagnosis and what medications you are taking if any?

Good evening @lisie, I want to welcome you to Connect. The Neuropathy group is quite good sized and active. I thought it was heavenly to find folks who talked about symptoms and solutions in a friendly, informative forum. So, that being said, I have not quite wrapped my brain around your description of what you call neuropathy bouts. Do you mean that your neuropathy hits you with pain in different places on your body and for different periods of time? Is the type of pain always the same? Please help me understand. Thank you and have a peaceful sleep. Chris

@peggyn, Good evening. It appears that you are not really happy with the prospect of surgery unless it helps with the neuropathy. Or did I misunderstand? I have had 2 surgeries in that area, a laminectomy and then a fusion. That was long before my neuropathy started. What did happen is that I no longer have any back pain.

The surgeon at the time told me I would need more surgery in another 10 years. Well....because of meeting a lady named Kate who became my fitness teacher, I do two exercises every day to maintain the lumbar spine. Other than some stiffness after sitting a while, my back is perfect and I will do whatever it takes to keep it that way.

I certainly wish for you relief from pain and suffering. Now, just have a peaceful sleep. Chriss

Didn’t help my neuropathy

@peggyn Spinal stenosis in the central canal causes myelopathy or damage to the spinal cord. I think neuropathy refers to problems of the nerves outside of the spinal cord which spine surgery would not address unless it was compression of the nerve roots where they exit the spine in between the vertebrae. Spinal cord compression can cause pain in the limbs or body that can be confused with neuropathy because they have overlapping symptoms. That was true in my case. I had spinal cord compression in my neck that caused pain all over my body. I had spine surgery at Mayo, and it fixed all that pain because it was being generated by compression of my spinal cord. I also have some nerve compression issues in my neck and shoulder from Thoracic Outlet Syndrome that I work on in physical therapy. Spine surgery didn't directly address that. The spasms caused by the spine problem had been triggering the TOS, but since surgery, the neck spasms have calmed down because it's all connected. Surgeons tell you that decompression will stop something from getting worse. Your ability to recover after this depends on how long the nerves have been compressed, how bad it is as in permanent damage, and your health and ability to heal. It's better to fix something before permanent damage occurs, and sometimes, it hard to say specifically when that would be. I know surgery is a big step, and I would encourage you to get several opinions. Other surgeons may suggest different procedures as there may be different solutions to the problem. I have heard that lumbar spine surgery recovery is harder because the lumbar spine is bearing all your body weight, and just leaning over will put a lot of stress on the spine. Find the best surgeons you can at large medical centers that have teaching hospitals and medical schools. If you can come to Mayo, I highly recommend it. I had excellent results for cervical spine surgery and Mayo treats a lot more of these types of cases and complex cases than many places. That's why I suggest a large teaching medical center because they have more experience.

@helennicola
Just wanted to wish you a safe trip. Don’t forget to pack your skateboard, there’s a steep hill there.
Have a blast!!!
Jake

@helennicola, Hey there Helen, thanks so much for your reply and for the good news about both you and your husband. Now you can concentrate on living life a bit more enthusiastically. Do you have family in California?

I remember that you wanted to try medical cannabis. Evidently Mount Washington doesn't have its own zip code that I can find. So if you could please tell me what larger cities are near you and their zip codes if you have them, that would be helpful.

Was that a not so happy face you placed next to flying? For eleven years I was flying on business frequently. I can handle a maximum of three hours and then I want to be on the ground. When I lived in Hawaii and traveled across two oceans to Europe, it was just plain gruesome.

Are you still comfortable with your medication choices? Is that why you are feeling much better?
May you be safe and protected from both inner and outer harm. Chris

Hi John
Are there different types of neuropathy? Are there stages of Neuropathy.?

Hi @tigreyes2004, I'm by far no expert and have no medical background or training but there are many different types of neuropathy. I'm not sure if there are specific stages of neuropathy but it does get worse over time and there is no real cure that I have found. Some types of neuropathy, like diabetic neuropathy may slow down or get better depending on how well you able to control what is causing it. I think if it's neuropathy caused by nerve damage and you can repair the nerve damage through surgery, you may be able to reverse the symptoms but that's just an opinion. Here is some information that may be helpful.

NIH -- Peripheral Neuropathy Fact Sheet
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Thank you John.