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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 1 day ago | Replies (6026)

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@surayabay24

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.

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Replies to "Hello, I don't like to talk or complain about my physical issues, but I'm at a..."

I have gotten some pain relief from low dose Naltrexone. Not a cure all but it has helped.

Hi @surayabay24,

Thanks for sharing. Your condition sounds worse than mine, and you do have my sympathy, though I know you weren't looking for that.

I can only reply with what I've been doing so far in an attempt to stave off further degeneration and the pain associated with it. I myself, am looking for ANYTHING to do that keeps me off of the harder-core painkilling meds that I'm always worried will turn me into an addict of sorts, along with side effects that just create new problems for myself when the drugs themselves don't give me the respite from pain that claim they are capable of.

I haven't tried acupuncture yet. Have you? No idea if it works or not.

I'll keep checking in here. Always on the hunt for the silver bullet of respite.

Best to you, my friend.

Glenn

I have many similarities to your situation. My main pain relief is a combination of lidocaine and a group of essential oils. I mix this myself and do obtain some relief. This relief is just not from the lidocaine since the area treated becomes warm and you can feel greater blood flow. It has taken me about a year to come up with a combination that works for me. It takes alot of determination and research to find something that works. We are all a bit different metabolically. I would encourage you to do some research on essential oils and work to find something that works for you, Good luck. PS ... I'm in my mid 70's You can find some trials that have worked with essential oils in PUBMED. Which is a peer reviewed journal source.

Goodness! How miserable. I have idiopathic small fiber neuropathy, diagnosed by punch biopsy. It started in my feet and hands, and is creeping up my legs. The only exercise I can do now without being painful, and then increasing my pain, is swimming laps. I learned from an aquatic physical therapist to use a mask and snorkel.
Anyway, I have a question. You mentioned 650 mg up to 4 times a day. What medicine is that?

A few thoughts - if you haven’t tried the seizure medicines for nerve pain (Gabapentin, Lyrica) you could try that. I found success with carbamazepine (Tegretol), which is not commonly chosen for neuropathy. My neurologist added Effexor, and I also use a muscle relaxant (Baclofen) as needed. Anything to block those pain signals.
A good physical therapist is a great thing to have. I’ve been through several, and have been with my current one for over a year. One thing she has done is identify areas that have weakened because of pain and lack of use. She also does dry needling, which works great for me.
If you can find a water therapy clinic, that is quite amazing too.
As you can see, I believe in looking for the “helpers”, and also taking medications to limit my suffering, so I can continue to be helpful too!