Living with Neuropathy - Welcome to the group

Hello, I don't like to talk or complain about my physical issues, but I'm at a point where the pain is getting worse. I am a 76-year-old former First Responder and Military Veteran, 82nd Airborne Division, Military Police, and paratrooper, during the Vietnam era. It is what it is, and I realize there may not be much available in the way of lasting pain relief but anything would be better than what I have found. One of the hardest issues is finding a Doctor who specializes in multiple neuro-skeletal issues, who can treat the 'whole patient' instead of referring you to a myriad of other specialists 'because they only work on certain parts of the body'. The patient's 'big picture' for a holistic treatment plan gets lost in the Doctor's specialty. About 18 years ago I was diagnosed with non-diabetic peripheral neuropathy in both feet and hands and severe arthritis in my feet, knees, hips, shoulders, lower back, spinal stenosis, degenerative disk disease, a crushed disk in my neck, a spinal fusion, and a recent shoulder replacement, and two carpal tunnel operations on the same hand that both failed. The arthritis and neuropathy pain I have is constant and daily. The pain level has been bearable with 650MG, often, 4 times a day, but has been getting worse lately. Physical activity and cold weather, make it worse. (I live in Northern Lake County, Illinois). I have been on all the pain med protocols, from Acedophenomen to Oxycontin! NONE OF THEM HAVE WORKED AS HOPED. I'm rated 100% (permanent and total) disabled due to service-connected related activities by the VA, four years ago. I have not been treated by the VA for any of these issues, I have been treated by private physicians, through Medicare, and secondary, self-paid insurance. The VA does provide all my medications, and I have been using a generic form of Vitoran topical from the VA that takes the edge off for a brief amount of time. Pain in my lower back has recently been increasing and constant as well as my knees and hips which I was advised should all be replaced. I have heart disease having suffered a mild heart attack twenty years ago and had two stents implanted. I have not had any additional heart issues and I have been taking heart maintenance meds since. Add, Chronic Bronchitis and you have an idea of the physical condition I'm in now. I'm concerned that my joint issues may soon put me in a wheelchair and still not have any meaningful pain relief. I am ambulatory now, and I can drive, my balance is poor and most of the time I can't feel my feet through the burning and stinging symptoms. I can't tell if my feet are freezing or burning, and the pain response from any trauma to my feet seems to take a few milli-seconds longer to register in my brain, making it worse. I can't drive for more than an hour, max. I'm looking for any recommendations for any new, non-internet pain scam offers, that are non-addictive topicals or other state-of-the-art, newly discovered, or in clinical trials, gene therapy, nerve pain blockers, or medications that may provide some pain relief if any exist. I know there are those a lot worse off than I am, and my issues may be a lost cause due to the time and advancing progression of these insidious disease issues. I'm not looking for sympathy and I appreciate all those who know what it's like. Any comments would be greatly appreciated. Thank you for your support and advice.

Hi Chris,

Thank you for the response. I've had painful things happen to me before (got burned, kidney stone, various accidents), but I've been fortunate that until this I've never had something that fell into the chronic pain/discomfort area. Like another said, I don't like to sound like a complainer, there's always someone worse off than yourself, but more just seeing if others had strategies that might work for me beyond what I've tried.

In answer to your question, no, I've never been tested for "small fiber neuropathy" via a skin biopsy. I didn't even know that was a thing. I'm not sure what the knowing would do for me, but perhaps it would. My tests were regular targeted x-rays, an MRI, and a nerve test. All these test did for me was conclude that it was nerve damage most likely a result from some spinal disk and arthritic degeneration.

I have not tried topical creams as of yet, perhaps because a mixture of I just haven't, and a bit of skepticism that they would actually work.

The morning exercises I do are a mixture of yoga stretching, the best that I got out of physical therapy, and just other stretching things that have always worked well and kept me limber in the past. I do these in the morning before work for about 25 minutes. The work I do in the gym is more weight/resistance stuff for my legs (I emphasize those more than ever now) in the belief that if I can get more blood circulation into my legs and feet it might help to stave off the pain.

Thank you much for the links. I'll check them out. I just want to see what's out there to do before I wave the white flag and venture into more hardcore pain killers. As of now, I'm mostly an IBU and Tylenol taker, though I have drifted occasionally into Tramadol. The thing is though, when it really acts up, goes to that 6-7-8 on the pain scale, they hardly dent it.

I do not have an answer for the annoying sweat thing. I just use powder, but that dissipates pretty quickly on bad days. My partner did find something online about a shot one can take to relieve such sweating, but haven't done a deep dive yet on it. Still in the research department on that annoying symptom.

I've really gained a deeper understanding of people whop suffer from chronic pain. It's not just the pain in and of itself; it's that it saps so much of your mental and emotional energy reserve that you want to employ in being productive and just enjoying like, for heaven's sake.

I have to run. Thanks again for the response, and best to you.

Glenn

Hello, I don't like to talk or complain about my physical issues, but I'm at a point where the pain is getting worse. I am a 76-year-old former First Responder and Military Veteran, 82nd Airborne Division, Military Police, and paratrooper, during the Vietnam era. It is what it is, and I realize there may not be much available in the way of lasting pain relief but anything would be better than what I have found. One of the hardest issues is finding a Doctor who specializes in multiple neuro-skeletal issues, who can treat the 'whole patient' instead of referring you to a myriad of other specialists 'because they only work on certain parts of the body'. The patient's 'big picture' for a holistic treatment plan gets lost in the Doctor's specialty. About 18 years ago I was diagnosed with non-diabetic peripheral neuropathy in both feet and hands and severe arthritis in my feet, knees, hips, shoulders, lower back, spinal stenosis, degenerative disk disease, a crushed disk in my neck, a spinal fusion, and a recent shoulder replacement, and two carpal tunnel operations on the same hand that both failed. The arthritis and neuropathy pain I have is constant and daily. The pain level has been bearable with 650MG, often, 4 times a day, but has been getting worse lately. Physical activity and cold weather, make it worse. (I live in Northern Lake County, Illinois). I have been on all the pain med protocols, from Acedophenomen to Oxycontin! NONE OF THEM HAVE WORKED AS HOPED. I'm rated 100% (permanent and total) disabled due to service-connected related activities by the VA, four years ago. I have not been treated by the VA for any of these issues, I have been treated by private physicians, through Medicare, and secondary, self-paid insurance. The VA does provide all my medications, and I have been using a generic form of Vitoran topical from the VA that takes the edge off for a brief amount of time. Pain in my lower back has recently been increasing and constant as well as my knees and hips which I was advised should all be replaced. I have heart disease having suffered a mild heart attack twenty years ago and had two stents implanted. I have not had any additional heart issues and I have been taking heart maintenance meds since. Add, Chronic Bronchitis and you have an idea of the physical condition I'm in now. I'm concerned that my joint issues may soon put me in a wheelchair and still not have any meaningful pain relief. I am ambulatory now, and I can drive, my balance is poor and most of the time I can't feel my feet through the burning and stinging symptoms. I can't tell if my feet are freezing or burning, and the pain response from any trauma to my feet seems to take a few milli-seconds longer to register in my brain, making it worse. I can't drive for more than an hour, max. I'm looking for any recommendations for any new, non-internet pain scam offers, that are non-addictive topicals or other state-of-the-art, newly discovered, or in clinical trials, gene therapy, nerve pain blockers, or medications that may provide some pain relief if any exist. I know there are those a lot worse off than I am, and my issues may be a lost cause due to the time and advancing progression of these insidious disease issues. I'm not looking for sympathy and I appreciate all those who know what it's like. Any comments would be greatly appreciated. Thank you for your support and advice.

Hello, I don't like to talk or complain about my physical issues, but I'm at a point where the pain is getting worse. I am a 76-year-old former First Responder and Military Veteran, 82nd Airborne Division, Military Police, and paratrooper, during the Vietnam era. It is what it is, and I realize there may not be much available in the way of lasting pain relief but anything would be better than what I have found. One of the hardest issues is finding a Doctor who specializes in multiple neuro-skeletal issues, who can treat the 'whole patient' instead of referring you to a myriad of other specialists 'because they only work on certain parts of the body'. The patient's 'big picture' for a holistic treatment plan gets lost in the Doctor's specialty. About 18 years ago I was diagnosed with non-diabetic peripheral neuropathy in both feet and hands and severe arthritis in my feet, knees, hips, shoulders, lower back, spinal stenosis, degenerative disk disease, a crushed disk in my neck, a spinal fusion, and a recent shoulder replacement, and two carpal tunnel operations on the same hand that both failed. The arthritis and neuropathy pain I have is constant and daily. The pain level has been bearable with 650MG, often, 4 times a day, but has been getting worse lately. Physical activity and cold weather, make it worse. (I live in Northern Lake County, Illinois). I have been on all the pain med protocols, from Acedophenomen to Oxycontin! NONE OF THEM HAVE WORKED AS HOPED. I'm rated 100% (permanent and total) disabled due to service-connected related activities by the VA, four years ago. I have not been treated by the VA for any of these issues, I have been treated by private physicians, through Medicare, and secondary, self-paid insurance. The VA does provide all my medications, and I have been using a generic form of Vitoran topical from the VA that takes the edge off for a brief amount of time. Pain in my lower back has recently been increasing and constant as well as my knees and hips which I was advised should all be replaced. I have heart disease having suffered a mild heart attack twenty years ago and had two stents implanted. I have not had any additional heart issues and I have been taking heart maintenance meds since. Add, Chronic Bronchitis and you have an idea of the physical condition I'm in now. I'm concerned that my joint issues may soon put me in a wheelchair and still not have any meaningful pain relief. I am ambulatory now, and I can drive, my balance is poor and most of the time I can't feel my feet through the burning and stinging symptoms. I can't tell if my feet are freezing or burning, and the pain response from any trauma to my feet seems to take a few milli-seconds longer to register in my brain, making it worse. I can't drive for more than an hour, max. I'm looking for any recommendations for any new, non-internet pain scam offers, that are non-addictive topicals or other state-of-the-art, newly discovered, or in clinical trials, gene therapy, nerve pain blockers, or medications that may provide some pain relief if any exist. I know there are those a lot worse off than I am, and my issues may be a lost cause due to the time and advancing progression of these insidious disease issues. I'm not looking for sympathy and I appreciate all those who know what it's like. Any comments would be greatly appreciated. Thank you for your support and advice.

Hello, @penn

I think of myself as very, very, VERY fortunate in not having pain. It was exposure to Connect that opened my eyes to how many of us live 24/7 with excruciating pain and how difficult it can be to lessen that pain. Until reading the many posts on Connect, I had been living in a bubble, believing that poor balance was all there was to peripheral neuropathy. I thank Connect for luring me out of that bubble.

Happy New Year to you, too!
Ray

I was diagnosed w/ PN in 1999 when I was 23. No one has been able to figure out what the cause is. Last January I started having horrible burning pain in my calves and quads along with weakness in my legs that is causing me to fall a lot more and is making walking even harder (I have spasticity from mild Cerebral Palsy). Thankfully I don't have the severe burning pain all the time. It ranges from mild to severe and seems to come as flare ups. I can't figure out what causes the flare ups though. Resting sometimes helps, but for the most part, all I can do is wait and pray the pain goes away soon. Last September I began to have pain and weakness in my fingers, hands, and forearms. I also have Sjorgren's and Fibromylagia, along with many other chronic health problems. My neurologist wasn't helpful at all. I saw a new neurologist who thinks my neuropathy could be genetic b/c as a child I would get ingrown toenails and I never felt the pain. She ordered genetic testing for me to see if my neuropathy is genetic.

I've done some research and found out that Charcot-Marie-Tooth Neuropathy and it seems to fit all the symptoms I have. Does anyone here have Charcot-Marie-Tooth? If so can you tell me more about it, what it's like to have it and anything you do to treat it? Thank you and God Bless!

Welcome @annehouseofdreams, @mhr31 posted earlier in this discussion that they were born with CMT and may be able to share their experience and suggestions with you. There is also an older discussion on CMT that may be helpful to read what others have shared.
— CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD:
https://connect.mayoclinic.org/discussion/cmtcharcot-marie-tooth-disease-type-2-neurological-disorder-form-of-md/.

Thought I would share these references with you in case you haven't seen them:
--- CMT Research Foundation videos: https://cmtrf.org/video-series-with-research-experts/.
--- (2015) A brief review of recent Charcot-Marie-Tooth research and priorities:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4392824/

Do you know when you will have the genetic test results?

I am new to the group and my diagnosis is peripheral neuropathy with neuropathy burning, sometimes stabbing in feet and in hands, they kind of tingle and I’ve noticed they’re starting to turn white. When I go out into the cold I would like to know more about the medical marijuana for peripheral neuropathy. What kind, I have used medical marijuana, but have never noticed any changes in these feelings in my hands and feet