Member Neuropathy Journey Stories: What's Yours?

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Hi John, I have been looking into possible connections between peripheral neuropathy and some other conditions that might suggest some additional approaches to treatment that have mostly, so far, flown under the radar. If I can obtain some meaningful benefit from this, applicable in my own case, I’ll be happy to share it. May know a lot more in a few months. David

I've been on Lyrica for around 15 years, but my neuropathy has gotten worse. After a few hospitals stays and a few specialists later, I went from 100mg a day to 450. I barely remember Christmas at all. I slept quite a bit and noticed that I was having cognitive issues. I decided to drop down to 300 mg's a day, which has helped the cognitive issues some. I've been trying to get off Lyrica for a while. At one time I tapered down to 50 mg, but the pain got the better of me, so I went back to my regular dose. While I was in the hospital back in 2018 one of my doctors took me off of it cold turkey but I didn't notice the pain until I was at home with no pain medication. I was in tears for the next few days of pain plus the mood swings withdraw symptoms that come with it. I was going to try the nerve stimulator that is attached to the spine but was turned down by insurance. I've been seeing a podiatrist that specializes in small nerve neuropathy. We've been looking at some sort of surgical option, which I can't remember the name of, but that didn't pan out, yet. That's how I ended up on a higher dose because that's what the doctor thought I needed.
Last night, my wife suggested that I come off of Lyrica. That's not the first time she has mentioned that. She's been looking into it for a while. Reading through these threads and she has noticed that my cognitive abilities have changed and told me recently that she doesn't think I need to drive because it worries her. She suggested instead of trying to ween myself off of the drug that should check into a rehab facility to come off of it cold turkey. At first, I couldn't help but think of my prior experience of that and think no thanks.
I was wondering if anyone else has gone this route and if it's worth it.

Hello @gpgarrison, Welcome to Connect. I'm sorry to hear that your neuropathy has gotten worse and the pain medication no longer works as well and has cognitive side effects. There are a couple of different discussions on tapering off of Lyrica in a different group than neuropathy that might be helpful:
--- My lyrica journey: https://connect.mayoclinic.org/discussion/my-lyrica-journey/
--- Tapering off Lyrica gave me panic, nausea, extreme anxiety: https://connect.mayoclinic.org/discussion/lyrica/.

Have you discussed tapering off of Lyrica or alternative treatments with your doctor?

Hi David @proteusx, Looking forward to any connections you find in your searching. For a majority of my adult life I was in the pre-diabetic category but never made any connections until I ran into a condition I hadn't heard before - metabolic syndrome, a group of conditions that together raise your risk of coronary heart disease, diabetes, stroke, and other serious health conditions. Which got me looking into possible connections with neuropathy. Here's a few I found:
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/

I posted earlier that chemo-induced neuropathy is different fro other neuropathy. This is what my oncologists have fold me.

It has been a 4 year journey filled with troubleshooting and misfires before landing on my new normal of Small Fiber Polyneuropathy. I joined Mayo Connect 1year ago because I was lost and needed support of others who understand my doubts, fears and were experiencing similar diagnosis.

My downfall began August of 2016 (age 46). I had unusual neck and head pain from painting. My PCP sent me to physical therapy, no relief after 1 month. On to acupuncture for 2 months, nothing. Xrays were of no value. Jan 2017 my MRI revealed 1 moderate cervical herniated disc and 2 bulging discs. Ah hah, the answer! Wrong. 2 spine surgeons agreed surgery was not the answer and sent me to Pain Management. I was diagnosed with occipital neuralgia and cervical spondylosis. I worked with 2 different Drs because the first PM Dr. could only provide help to my neck while my head needed help too. This resulted in a total of 4 cervical and occipital nerve blocks as diagnostic tests (these are preliminary to Radio Frequency Ablations). From that point, July 2017 through January 2019 I received 10 Radio Frequency Ablations on my neck and head. Burning off the nerves provided initial relief but, eventually petered out. I so badly wanted to be cured and get back to work. I kept receiving these intrusive procedures and they became physically harder to take.
I developed Neuritis which felt like fire works in my neck and my shoulders now were becoming decrepit. I lost ability to use my arms and shoulders properly. I believe (and so does my neurologist) that these ablations were having repercussions on my body and causing nerve damage. I was prescribed short term Gabapentin eventually followed by Lyrica and a few round and rounds between the 2 drugs due to insurance coverage.

During this time, headaches and severe migraines were playing a role but again, my head pain was more than migraine. Occipital neuralgia supposedly. After 2 neurologists,…chronic migraine was diagnosed and I began botox injections every 3 months. I felt like a HUMAN PINCUSHION for 2 years straight between 40 botox needles at a time to the head plus all those God awful needle entries to my head and neck from RFA's I then began the newly introduced migraine monthly self injections of Aimovig followed by Emgality and now Ajovy (they lose effectiveness for me after 8 months or so).

During these times, stranger things began throughout my body. Back and hip pain had begun developing. Toe and foot pain, along with hand pain. These pains all lead me to Orthopedic Drs. who x-rayed and said nothing's wrong, I must have sprained something. I wore a boot for the foot I couldn't walk on, a hand brace (from weeding too much – what? who gets a weeding injury). I had an MRI of my back…it showed a mild disc protrusion. Yeah, so what. Just like my neck, nothing major to be effecting me this way. I received epidurals in my back and started PT again. The common theme began to reveal that nothing majorly, structurally, was wrong with me. I felt too young to be falling apart to all these unexplained, tormenting pains. I myself, decided to go to a Rheumatologist to rule out fibromyalgia. The Dr said I have mirroring symptoms but, not fibro and suggested my Lyrica dose be increased.

January 2019, I had just had my final rounds of ablations and my pain was exacerbated from them, more than ever. In retrospect I believe I made a big mistake having too many and pushing for the reason of getting my life and job back. It backfired on me. The Fall prior began oddities in my body such as tingling in my hands. Pins and needles all over. My body was not neurologically right. In addition, I was exhausted, having palpitations and shortness of breath. These symptoms slowly grew and took over my body. I managed miserably to get through the holidays then went to my Neurologist in January. I explained through tears and frustration that something was wrong neurologically and if he couldn't figure it out I was going Mayo Clinic. It was finally then that he tested me via skin punch biopsy and diagnosed me with Small Fiber Polyneuropathy. Ahhh hahhhhhh, finally! I was not going crazy, it was not all in my head, there was a name for this chaos in my body.

And so it began…a thorough and extensive workup to find an underlying cause. A plethora of blood work and genetic testing. I had already had MRI's on my brain, neck and back. I had bloodwork drawn prior for SED rates when I was trouble shooting but, this testing lasted for 2 months. Immediately landed on a B12 deficiency. I began B12 injections every other week for months until my level regulated. I slowly had more energy and could breath better without my heart racing.

Now, we work on regulating and controlling nerve damage and pain . My neurologist says maybe 2 -3 years nerves will regenerate. It's a crap shoot. I stick with Lyrica, tried Cymbalta for over a year then weaned myself off because I had memory issues. Throughout my pain journey, I began taking Nucynta until my new insurance wouldn't cover it. I moved to Norco (hydrocodone) and added medical marijuana for when hydrocodone is not enough.

My body was increasingly feeling sunburned, pins and needles, electric shocks in my head and face, sharp unexpected pains throughout, burning and weakness. By spring of 2019, my legs started to die and walking became restricted. This was and still is my biggest fear. At the same time, with my body in a state of flux, I developed Chilblains on my feet with tenacious itching, red painful sores and my feet were flaring between red hot and blue, purple, grey colors. My neurologist claims it was from neuropathy. This bout brought me to a dermatologist, vascular and cardiologist for ample testing (echocardiogram, CT scans) and ruling out any other misfires. After this episode settled, my Neurologist suggestion lidocaine infusions to control pain. I sat for 5-6 hours in the apherisis unit of my local hospital every Monday for 5 months. Lidocaine is a slow drip infusion that increases dose based on body weight. I was "in it to win it" (similar to my radio frequency ablations) but, it was a failed experiment for me and offered minimal relief. Others receive benefit.

I also had a spinal tap to rule out autoimmune diseases. I do not have any, thank goodness. However, the spinal tap left me with a ferocious spinal headache which landed me in urgent care followed by the ER and needed a cocktail to stop the pain. Never in my life have I experienced something so painful. This all lead me to seek the help of a chronic pain psychology for 2 months. I needed help but found she wasn't the one to help. I got nothing from her. I am fortunate to depend on family and friends and Mayo Connect for my mental health support.

My suggestion to anyone with peripheral neuropathy or symptoms….please do your research and gain knowledge about your body. Be your our advocate. I learned the hard way that we're kind of on our own out here. Drs can only take you so far and dont have the time to care as we want them to. It's very important to find a good PCP (primary care physician) and establish a relationship. They will lead and direct to the best of their abilities. My PCP is wonderful! He is my hydrocodone prescriber. He recommended medical marijuana for my comfort. He wrote my disability letter and qualified me for long term disability both through my job and Social Security. I know he's got my back. I also take a supplement protocol, try to eat healthier, and keep active as best I can and practice mindfulness, breathing techniques and meditation. I also benefit from weekly myofacial release therapy. In June I will attend Mayo's Pain Rehabilitation Program for 3 weeks

Living with peripheral neuropathy in a constant battle. A 24/7 job. It takes mental strength and tenacity to not be defeated by it. It takes a village, if you will, to have all hands on deck, by way of medicine, mental health, holistic approaches etc… I say I still work but, no longer get paid. I'm sorry for the length of my story but, it was therapeutic for me and I thank you for reading it. I'm happy to help further should anyone need.

Be well-
Rachel