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John, Volunteer Mentor (@johnbishop)

Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: 11 hours ago | Replies (372)

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@rwinney

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

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Replies to "It has been a 4 year journey filled with troubleshooting and misfires before landing on my..."

@rwinney Hi, Rachel. I found myself crying reading this. Your struggles are not to be believed. I would not even know how to respond to everything you have wrote. One thing came to mind, but does knowing even make a difference? I started wondering if you could have CRPS, with all of your traveling pain. Would you believe, another thing about your health came to mind, but my tears washed my thought away. Or was it a senior moment? Could be both. It is really bugging me that I do not remember, because it had to do with diagnosis. I know my heart goes out to you, and if I remember what I forgot, I will post again. You have worked so hard, that it must be utterly exhausting. To have such a clear thinking brain, and a deteriorating body, just kills me. I used to listen to Stephen Hawkings and wonder where/how he got his courage. How do any of us get our courage? Why not give up. Your writings are a testimonial to the human spirit. Your drive overwhelms me. God bless you, Rachel, and may Mayo help you in some way. Love, Lori

As if my story wasn't long enough…I wish to add, for anyone who may be in early stages of neuropathy troubleshooting.

I had a negative EMG/Nerve Conduction Study in 2017 and not diagnosed with SFN until 2019. As I learned that Small Fiber Neuropathy is NOT shown in this test, only Large Fiber Neuropathy, I wondered why noone thought to line me up with a skin biopsy earlier to rule out SFN, given my symptoms of nerve dysfunction and not proving Large Fiber through the test.

In retrospect, I do understand that SFN is still very unknown and misunderstood. I will take some of the blame (it's not all on Drs) for not pushing and learning enough during that time. Such foreign territory, especially when you are overwhelmed by pain.

Wow, Rachel, what a crazy 4 years you have been through! You are certainly a friend to the medical profession, you have been seen by a lot of doctors! Linda and I have read your entire saga and are amazed. Amazed by your drive, amazed by your willingness to experiment and amazed by having such an attitude of positivity in the face of such disappointing failures on so many fronts. It sounds like you have put your body through so many type of treatment it's lost track of which way is up. I hope the Mayo program in Florida leads you to some more and better understandings of what your body needs. You mentioned your legs were dying. I am wondering, do you have use of them at this point? And did this all happen to you out of the blue 4 years ago whereby you had okay health prior to that? And if so then you have an idiopathic condition with no known precipitator of it to begin with? Such a strange thing to happen. At least with Linda we understand the cause: chemotherapy. Although in some ways all that knowing that does for you is to feel such immense regret at deciding to do it. Especially now knowing an alternative treatment is available for cancer that is SO much preferable to chemo (which I will happily tell anyone about who is interested by the way). Well, we admire your courage and your pluck Rachel. You are a TROOPER in all the best senses of the word. Best from us both, Hank

Dear Rachel, my heart is breaking to hear all you've been through. I have a similiar story in that I have so many afflictions besides neuropathy. Neuropathy tries to destroy my life. The symptoms are so many. I fight for my sanity and crawal out of my skin. Ug. The Gabapentin and Lyrica have horrible side-effects but am now back on Gabapentin. It helps me not jump! Thankfully I'm a woman of faith and my God is so present and gets me through. His peace through Christ. I know this life is only temporary and I will get a new body some day!!! In the midst of all my diseases and unrelenting, often intolerable pain, I have joy and hope and assurance. I find I have to ask close people to adjust their expectation of me. I hate doing that. No one understands this pain. I00% of the time I tell people when they ask how I am, that these are facts not complaints. I will pray for you when my failing memory allows! Many blessings and warm regards, Sunnyflower

Rachel I feel your pain !!

Hello Rachel my story is lengthy as well. I have been though many testing and have come up with no diagnosis. Unknown cause for my Perpheral Neuropathy. Cut a long story cut, I take lyrica for some of the shocking pain we experience. It's a living nightmare. I started in my late twenties and its become unbearable at 50 and I'm now 56 yrs old.

Regards Helen Holland.

@rwinney thank you for sharing! My journey is very similar to yours. Have you tried dronabinol? it is a synthetic THC that is mostly prescribed to cancer patient. It is very good to take some of my pain away. Can be prescribed by pain management doctor in New York (not sure about other state). Also 5mg of Naltrexone at bed time. II's a compound drug that pharmacist can make when prescribed by your doctor. It work on the opioid receptors and help with pain.

Would you recommend some type of marijuana product; creme to put on lower extremities. Your history is starting to sound like my peripheral neuropathy (pinch nerve) and indio neuropathy (lower calf and feet). I hear about marijuana products, but don't know what to purchase. I appreciate any assistance here.

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