Member Neuropathy Journey Stories: What's Yours?

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

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.

@helenholland3
My word Helen, that is a very long road you have traveled with PN. It sounds like you are saying it was more tolerable for the first number of years until you reached 50 at which time it took a turn for the worse, is that right? You say you take Lyrica now for pain. Have you had any luck with any other pain treatments or is that it? My wife has it mainly in her feet and ankles. She mostly uses marijuana and kratom to help ease her pain.

Since this is the journey stories discussion, you can add more detail to your story if you wish. We are interested! Best, Hank

@helenholland3
My word Helen, that is a very long road you have traveled with PN. It sounds like you are saying it was more tolerable for the first number of years until you reached 50 at which time it took a turn for the worse, is that right? You say you take Lyrica now for pain. Have you had any luck with any other pain treatments or is that it? My wife has it mainly in her feet and ankles. She mostly uses marijuana and kratom to help ease her pain.

Since this is the journey stories discussion, you can add more detail to your story if you wish. We are interested! Best, Hank

Hi @jesfactsmon Hank.
I have GCA as well as Diabetes, and have suffered terribly with neuropathy in my legs. My Diabetes is well controlled on a low insulin injection daily and I had never experienced neuropathy until my GCA diagnosis
1 1/2 years ago when I was hospitalized and given 3 days of massive Prednisone I.V. Since then, the neuropathy has been constant, and so much worse if I eat carbs. I live in a seniors' residence, so it's difficult to avoid carbs on their 2 menu choices for lunch and dinner. I avoid pasta, rice, etc., but the second choice is often half a sandwich and soup that often has potatoes, pasta or rice as an ingredient. So, bread and more carbs. Even the half sandwich sets off the neuropathy.
My G.P. yesterday said she may prescribe a medication to ease the neuropathy but I'm loathe to take on another Rx. Any suggestions, or experience with these meds, would be appreciated.
I've been trying CBD oil, but had a blood clot December 21st so was switched from Zarelto (before the clot) to Lixiana (CBD compatible) at which time, after 10 days, I had the clot, to finally Eliquis (CBD compatible). Not feeling well on Eliquis so may have to go back on Zarelto and drop the CBD oil. Only take 1/3 dropper so far, a miniscule dose, but it has helped me sleep. Anyone experienced with CBD oil and blood thinners would also be appreciated. I was dearly hoping to continue with CBD. Thanks everyone. Sorry to be so verbose! Lol

Hi Hank my symptom's are all the above. It seems my PN has travelled although my body. I have tried many drugs but nothing works. Marijuana & cannabis oil is not legal in Queensland, Australia so I don't have that option. I have other issues which I thing is caused by my neuropathy. Doctors aren't looking at the big picture here with my other issues. They can't treat the cause because they have no idea where my neuropathy is coming from the cause.

@artist01
Hi. Is there any chance that your reaction to carbs might possibly be gout and not neuropathy? From something I just read, gout can be triggered by sugars (which carbs are). Just wondering. Institutional food is generally awful (not always but usually) and I am sorry that is what you are relegated to. I assume they do not cater to special situations? I think some nursing facilities are appalling in how little actual "care" is being dispensed. I am sorry to hear that cbd oil interacts negatively with your anticoagulant meds. I know the frustration that must cause you. My wife has very bad neuropathy but can not tolerate almost ANY pain killers, even OTC ones as she is allergic to all of them. That is mainly why she can only use THC products and kratom. Some cbd oil is available without THC and I wonder if that might work better for you? Have you already been routed through the usual pain meds by your doctors, i.e. gabapentin, lyrica and cymbalta? If so, how did you do with them? Being in a senior facility may limit your options greatly so this might not be an option, but many on this sit have expressed numerous times how much myofascial massage has helped them. If you'd like to know more there is a discussion here you could read:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?utm_campaign=search
I have so much compassion for you, and I hope you can find some solution to you cbd issue as well as some help from your residence as to your dietary options. I'm sure you have done this but I'll ask just in case: have you asked them whether they might be able to make a concession or two with your meals to have less carbs and more vegetables, preferably fresh ones? Can you enlist any family members to help go to bat for you on this?
Best of luck, Hank

@helenholland3
Helen, there are many things which have caused PN for various people. I have been keeping a list which I add to whenever I hear a new one. Can you believe that PN has been caused by something as innocuous as having a needle inserted in one's body? For many, once they have PN the cause is irrelevant as it has no bearing on the treatment. However some causes which are ongoing do need to be addressed. Some people have had their PN caused by low vitamin b12 in their systems. In that case, getting a b12 boost is in order asap as we all need adequate levels of b12. But who'd think it would cause PN? Not me. PN is the worst to deal with as effective treatments are virtually unavailable. Good diet, adequate exercise and restful sleep each night are crucial as is a stress free lifestyle. But beyond those things it's a crapshoot as to what may or may not help you. I am disheartened to hear that medical marijuana is not legal in Australia. Is legalization being considered? So few options for people with chronic pain. My sympathies go out to you dear. Here on Connect at least you are among a veritable army of co-sufferers who are living this nightmare with you. Please hang in on Connect and with time you may find out some things that you will find helpful to you. My very best to you, Hank

Hello again, @jesfactsmon. Thankyou so much for your caring reply. Actually the food here at my seniors residence is very good, but no, they don't cater to special diets, even Diabetic diets. I've pursued that route extensively with no luck. They are rigid on that one.
I've had gout once many years ago so know what that feels like and am confident my neuropathy is not a symptom of gout. Like your wife, I'm unable to take most meds. My one specialist told me that CBD Oil was about all they could try for me at this point, and yet the anticoagulants are presenting a major problem. I have yet to check with my major specialist (one of 4!) to see if he can offer more insight. My research tells me that if my anticoagulant is not metabolized by CYP450, then CBD Oil is ok to take, but Eliquis falls into that category. Two specialists, referring to their doctor-accessed website, said it was ok to take CBD with Eliquis. My CBD oil is 31.1, so barely any THC. My amateur theory is that maybe I could switch from 2 x 5mg per day of Eliquis to 1 x 5mg per day and add the CBD so that the combination would not thin my blood too much, CBD being a natural blood thinner. Apparently, taking the two could thin the blood too much, causing dangerous bleeding. (pretty soon I will have my medical degree! lol). I plan to present that idea to my No. 1 specialist, the one who initially said CBD would be ok to take with CBD Oil.
Thankyou for your thoughts, Hank. I will read the website info you sent me
for more insight.
Keep well.
@artist01 Laurie