Member Neuropathy Journey Stories: What's Yours?

Good afternoon. This discussion is an effort to give everyone an opportunity to share their neuropathy journey....all in the same discussion. How helpful will that be......you can then use the search field by topic or treatment. As your journey continues, it will be great to keep up with each other and add to our neuropathy knowledge bank.

So....here we go. My favorite saying when I learn about something on Connect, "if only I had known" or "if only I had done some research", or "if only I had begun posting earlier"

The scene:......................patio breakfast and a few games of cribbage with my e-harmony friend, now life partner, about 7 years ago. We set up the board and he handed the cards to me to shuffle. When I tried and they scattered everywhere, he asked: "What's the matter with your hands?" That was my neuropathy coming out party.

Next steps: ....................I revealed my situation to my two nurse friends. One offered me essential oils, the other medical cannabis. I chose cannabis because I knew my pain level was too high for well-intentioned essential oil products. To this day I manage my pain with a few CBD: THC products…..tinctures and topicals in different ratios. I was beginning to have high-level pain in my arms, wrists, and hands, electric shocks in my head, and burning pain down my legs as well as inside my abdomen. Good thing I had a coach. I would have been overwhelmed with all of the experimentation and evaluation required at that time to find the best medical cannabis products.

In the meantime:............My orthopedic surgeon was consulted because at the time I had fallen down the stairs and needed a rotator cuff repair on the left side. He had previously done the reverse shoulder on the right side and I thought possibly it was "in trouble". He immediately took X-rays and went with me to his "buddy" who does spine work. They collaborated, put a hold on the rotator cuff, and did the cervical fusions first, rotator cuff second. I didn't even know enough to tell the difference between thoracic and cervical. I did remember lumbar.

Enter the neurologist:.....Only after the cervical surgery had healed and fused, did I learn that the pain, tingles, and needles, were still there which led to more tests and finally a punch skin biopsy to confirm that I had small fiber peripheral neuropathy (SFPN). It was not a bad shoulder surgery and I wore that darn brace for 3 months so there would be no claim of bad neck surgery. I also learned that my idea of slow learner had no comparison to bruised nerves that need to heal to be helpful.

Bump in the road:.......... I had to get off of an anti-depressant that really helped my early-onset EOL ideation because of digestive side effects that were just too much to overcome. I substituted one more dropper of cannabis in the evening. Not as good as the anti-depressant until I adjusted some dosages.

The future:..................... learn everything I can. Alter what I can, accept what I can't.
Knowledge is Power. Share your neuropathy journey to help others on Connect.

What would I tell my best friend if she was diagnosed with SFN?
Join Mayo Connect..... participate, contribute, question or just use it for research........then you won't be saying, "if I had only known."

May you be safe and protected.
Chris

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.

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

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

Chris I agree with you absolutely. Connect is a most wonderful tool for those dealing with or simply trying to understand PN. The great thing is that it is so well organized and it is fairly easy to search around for things. OK, so in reading your saga it sounds like (correct me if I missed it) there is no one known precursor to your developing neuropathy? Strange how so many people do not know what caused it for them. I suppose for some it might be hereditary. I am glad you are finding help from THC. Hank

Good evening @jesfactsmon, So.....you know, I am sure, that the greatest precursors for neuropathy are diabetes and chemotherapy. Everything else is labeled "idiopathic" and that is the category where I ended up. Knowing very little about nerves except how much pain their lack of functioning can cause, I started thinking about all of the injuries to my body from the time I was about twelve and had a severe break in my ankle from twirling too fast on roller skates. There have been 13 other surgical repairs to my body from falling off horses, diving too shallow, falling over a sprinkler with a crash, and including the last fall down the mountain which then introduced me to cervical fusions. I just gotta believe that somehow we pay a price with structural injuries. No matter how hard the clinicians try it is just not possible to repair to be just as good as you were before. And then along comes aging, with all the aches and pains.

And there you have it.....lifestyle choices that are riskily undertaken by someone with less skill than what is required to stay all in one piece. That's my story and I have to stick to it to explain all of the neuropathy symptoms that I now tackle with patience and perseverance.

May you be healthy and content.
Chris

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

@rwinney Hi, Rachel. My neuro doc did not want to bother me with a small fiber test, because he said the treatment would be the same, whether I had a diagnosis or not. He said some people are not nuts about getting the little samples taken from their skin. It hurts, I guess. I insisted on the test, and my test for small fiber did not come out positive. Only my large fiber did. Who knows. There is no good treatment for this goofy, painful illness, anyway.....Love you, Rachel, and thanks for the sweet compliments to me. Yes, maybe check out CRPS when you go to Mayo. Have you done any mirror imaging techniques? Why I ask, is that they are done successfully, sometimes for CRPS. Always thinking. Sometimes I wish I could just stop already, and just drink a damn beer...… Love, Lori

I'm just learning about the mirror techniques and am ordering the books (volume 1 and 2) that Barry recommends. A work in progress!