Member Neuropathy Journey Stories: What's Yours?

Thanks to all of you for your well wishes. I thought that the subject of my appointment yesterday was a DRG, but it was taken off the table for now. The neurologist showed me the MRI she had ordered, specifically the canal in my spinal column in the lumbar region through which a lot of nerves travel from the brain to hundreds of places. At about L3, the spine is squeezing the nerve cluster (spinal stenosis), which could be causing problems in multiple places. Through a small incision, the surgeon will clean up the debris and cut off a little bit of 2 or 3 bones, giving the nerve canal the space it needs. My wife had a similar surgery last year to enlarge the space where her sciatic nerve was being squeezed, and she had almost instant relief.

I'm going to discuss it with my pain specialist and regular neurologist and get their input at my next appointments with them.

Lunch has ended and I have to get back to my chores.

Jim

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

Rachel I feel your pain !!

Rachel I feel your pain !!

@rwinney Hi Rachel, Just in tears reading your ill health journey. I do not even know what to say. Just crying here, and I find that everyone's illness is just paining me greatly. I know there is nothing to take this all away. I know this is all about brain power and the will to survive. I cannot believe what you have gone through. At least I did not get sick till I was 65 years old. You are so young, smart, and gorgeous. It kills me. Just flattens me. Just so sorry. Man, I would hug you dearly, if I could. Just crying here. I am a mess for everyone........Lori Renee

@lorirenee1 Lori, my friend, your heart is huge and so appreciated and your love, concern and empathy is felt greatly throughout Connect but, you my dear can not take on others woes to such a sympathetic, emotional state. It does you no good getting so upset. You and I both know that nerve damage and dysfunction is triggered to bring more pain, burning and discomfort by stress. Please take a break from stress. Sometimes we must stop ourselves from reading or take a break for our betterment.

With much respect and care,
Rachel

@lorirenee1 Thank you for your response. I did not mean to be out of line in any way, just looking out for you because, I also worry, and Connect is and can be a life line for so many, including myself. Thank you for your compliments. They mean a lot to me and so does your support. I too think about meeting everyone one day. Wouldn't that be so cool?!?! 😁 If you dont mind me asking, are you taking an antidepressant for pain and/or emotional support? I hope you do what's best for yourself...if that means taking a break or staying connected, I always wish you strength and peace. BiG virtual hugs coming your way!!! XO 💞
Rachel

@rwinney Awww, Rachel; Lately, I just find myself crying from you guys. I think I may be in a more fragile state in general, with this DRG not working very well, and just feel delicate. I have grown to care for people here so very much, and I actually fantasize meeting all of you in person. I think about this quite often. I have also thought about needing a break, and if I disappear a day or two or three, it might be because I need one. And yet, I do not know if I can, because I worry about everyone. Your description of what you have gone through just laid me out. I cannot describe it. Your suffering just is crazy. Words cannot captivate my feelings for you. No one tries harder, or has more spirit than you. When I say you should be teaching the Mayo Pain Classes, I am not kidding. I hate to see anything interfering with the fire inside of you. I know I am losing my fire, and am much more depressed now. Maybe it is just natural. I just love everyone here. But reading really does take a toll on me. Maybe it is a subject that needs to be discussed? We are truly intimate with one another, and it is the very closeness that I both love, but sometimes cannot endure. You are so sensitive to tell me to back off a bit. You are such a Dear One. A good woman. I am crying again. I find I cry easily, and sometimes, for almost nothing. Maybe it is just a terrible sense of loss for all of us. For what sickness has done to all of us. For what we have all lost. For what will probably never be regained. Just too much for me, sometimes. And I am sure, we all go through this. There are no answers. Just lovely people who share their souls here. What more could you ask of another human being? Love to you, Dear One. Lori Renee