Living with Neuropathy - Welcome to the group

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

Hi. I'm new to a forum like this. I suffer from neuropathic discomfort and pain particularly in my feet, but also in my knee and ankle joints. I work as a teacher, love my job, but it's becoming increasingly difficult to perform at an optimal level. I am so mad at myself for not reading the early warning signs, or paying enough attention to them, numbness in the feet and toes, tingling, burning, and those pain signals the nerves sent to my mind unremittingly when I was going through a bad period. I say mad at myself because it never occurred to me that I could be suffering from nerve damage that may have been better headed off at the pass had I seen it as such.

Now, I'm about nine months into a new phase of pretty much regular pain and discomfort. I finally researched what I was feeling and went through all the exams you can imagine for such a thing. One thing that annoys me about it is the sweating of my body wherever there is skin on skin contact. I'm not a big sweater, but holy smokes, on bad days I'm moist/wet in all these places.

I have been prescribed Lyrica, but still haven't started yet, even though it's been prescribed for me for a few months now. I'm very leery about it's side effects, it's addictive nature, and just the general dependency on it that it may lead me to. Here's what I've tried as an alternative so far:

--Omega 3 fish oil tablets
--Vitamin B complexes
--Massage therapy
--Chiro
--Yoga and stretching exercises most every morning
--Working the hell out of my legs and feet at the gym even though it kills me to do so at times

I still haven't found the alternative "magic bullet" for it, or package of things that either heal the damage, or relieve the pain and discomfort. I'm starting to think that I caught it too late, and that it's simply going to be a chronic condition for me the rest of my life, and probably get no better than it is now, or even worse. Though I don't want to, I may have to start in on Lyrica or some other med at some point.

Is there anything else that really yielded results for people? I'm 64, by the way.

Good evening, @memyselfi, welcome to Connect. I am so happy to see a very nice introduction with specific information about your condition and what you have tried so far to control the neuropathic symptoms.

I think you started with your feet. I also have to deal with pain and tingling tangles in my feet. Right now, my right heel feels like it is giving off painful sparks. And before the night is over, those specific neuropathic symptoms might have moved to the left foot.

You mention going through a lot of tests. Did that include a skin biopsy to identify small fiber neuropathy?

Other than Lyrica, have you been introduced to any topicals for your feet? Some of the members even use Vicks and other off-label products.. I started with a topical that was lidocaine-based and made by a compounding pharmacy. If you choose this type of custom topical you can modify the recipe as needed. If you are interested in medical cannabis, then the best options that I have found are made by Papa and Barkley, www. papaandbarkley.com.

And while I'm at it, please check out the following helpful websites for the latest information about neuropathy symptoms and treatments.
https://www.foundationforpn.org/
https://neuropathycommons.org/

At this point, I am just going into year 11 with SFN "small fiber neuropathy." In that time my medications and dosages have changed considerably. Right now I am going through what I hope is the end of a four-month program to taper off some medications and substitute them with new ones that my doctor and I hope will fit my evolving situation better. And you are correct, everyone's situation is different. However, you didn't catch it too late. Neuropathy is a progressive condition for which at this point there is no cure.

Regarding your activities, I am right with you about stretch Yoga and a hand's on therapy. In fact, I had my first of two MFR (myofascial release therapy) sessions this week. Tomorrow I will wake up with my Yoga group on Zoom.

For a long time, @memyselfi, I was in a state of denial as I was forced to accept the reality that neuropathy will be a major issue for me for the rest of my life. And by the way, I also have the "sweating" issue....perhaps 2 or 3 times a day. Would you please share with me what you have found to be helpful with the daily sweat?

May you be safe, free, and protected from inner and outer harm.
Chris

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.

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

Thank you. Is it a narcotic? I was on Oxy for a month, felt loopy, had no pain relief, and I had withdrawal symptoms for a week, after only a month on it! Never again!

It isn’t a narcotic. I take 3 mg. In higher doses of 50mg or more it’s used to treat opioid addiction. In low doses it can be used to treat pain.

Forgot to mention. The pharmacy won’t have low doses so you will have to take your prescription to a compounding pharmacy. It costs me around $50 a month so it’s not cheap.

Hi @surayabay24, I would like to add my welcome to Connect along with @daj3333 and others. I have idiopathic small fiber peripheral neuropathy but I'm fortunate to only have the numbness for symptoms. I also have degenerative arthritis along with several other autoimmune conditions that can be painful at times but it's not a 24x7 thing like it sounds for you. The Foundation for Peripheral Neuropathy has a pretty comprehensive list of treatments for neuropathy that you might find helpful here - https://www.foundationforpn.org/treatments/.

There are quite a few discussions for different treatments for neuropathy. Here's a list of the discussions if you want to take a look - https://connect.mayoclinic.org/search/discussions/?search=neuropathy+what+helps.

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