Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What’s your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

@rwinney

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.

Jump to this post

@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

REPLY
@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

Jump to this post

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

REPLY
@sunnyflower

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

Jump to this post

@sunnyflower Neuropathy is often an invisible disease. I suppose some people's thoughts aren't very kind when they see me park in a handicap spot, and see me walk into a store with no cane or limping or whatever. They just don't know how much every step hurts, and as a rule, handicap spaces are closest to the door, saving me a few steps. Mental illness is another invisible one, mostly. People like my service dog, and sometimes will ask me what her service is. Usually, telling them that she's a psychiatric service is enough information, but sometimes people have a lot of questions because either they need a dog, or someone in their family needs one. I try to be polite, and hopefully make any interaction a learning experience. I've had only a few negative encounters with people who don't believe me, or don't believe that a psychiatric service dog isn't a real service – it should only be a companion dog or whatever. I carry a card with the ADA information to show if necessary.

Jim

REPLY
@jesfactsmon

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

Jump to this post

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

REPLY
@artscaping

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

Jump to this post

Chris @artscaping until I began reading people's stories on Connect I was not that aware of the fact that PN could arise as an aftermath of injury/surgery, but I now know that it clearly can. How unusual for someone other than a combat soldier or a commercial fisherman to have had so many injuries in their life. Sounds like you have paid a price for having had what sounds like an adventurous life. On second thought, remembering back to our experience with Linda's chemo, that felt like an adventure as well, a nightmarish one. Best, Hank

REPLY
@sunnyflower

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

Jump to this post

@sunnyflower if you wanted to post a more complete picture of your illness you have an interested audience here on Connect. You mention "so many afflictions" as well as "no one understands this pain". On Connect I think you actually have found a place where many people might be able to understand what you mean. You also mention your memory failing. Many of us have memory issues due to aging but in your case is this another symptom of your illness? Just want you to know that, at least in my short time on Connect, I have found some pretty sympathetic and understanding individuals. My wife has peripheral neuropathy and lives in pretty much constant pain. We have learned a lot of info that has helped her by participating in online forums such as this, but I think Connect is a particularly good one, at least for our purposes. So feel free to unburden yourself if it helps. I am so glad you can find solace in your faith. I too rely on that as my rock, as does my wife. That can hold one together like nothing else. Best, Hank

REPLY
@lorirenee1

@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

Jump to this post

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

REPLY
@rwinney

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

Jump to this post

Hi Rachel, Basically, it sounds like mirroring must be only when you have 2 appendages, 1 not being in pain. You put the good appendage in a mirror, and stare at it, and say how healthy it is, how wonderful it is, how perfect it is, and the brain thinks it is the "bad" appendage that is good. A brain trick. Smoke and Mirrors. It is done for Phantom pain, as well. Oy, it gets so crazy. Like a magic trick! But whatever works, works. Good luck, Ms. Rachel!!! Lori

REPLY
@artscaping

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

Jump to this post

@artscaping Holy cow, you have lead an adventurous life. A wild thing! I do believe there must be some decent memories with all this. but yes, you have paid a large price. Please have a decent day…….Lori Renee

REPLY

Hi all, My journey to neuropathy was a short one. Found I had stage 1 Breast Cancer, and had a successful lumpectomy. Had radiation into the tumor right at the time of the lumpectomy, but never had chemo. About 4 weeks after surgery, as I was beginning to feel better from the surgery itself, my toes started overlapping, and I bought toe spacers. The overlapping lead to pain, and it just never left, and got much worse with time. Wound up at 2 neurologists, and both said I probably had an autoimmune response to the breast tumor, but blood work did not show that. However, neurologist said the test is inconclusive. When I did my nerve conduction test, the guy who did it said that he has had many patients who have only had radiation, that got neuropathy. My breast surgeon said she has never had anyone get neuropathy after surgery. There is a you tube video from Mayo that says when a person gets neuropathy within a month of surgery, it is from something to do with the surgery. At this point, I don't even care what it is from. I have not had a day without pain since my breast surgery recovery. I do not even think about breast cancer, because my mind is so occupied with pain. And there you have it…..My tale. Lori Renee

REPLY
@artscaping

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

Jump to this post

I agree Chris! But when I tell my neurologists about the beatings my body took over the years, they don't think they are relevant. Go figure. A fall off a horse at a full gallop, pushed down full flight of stairs, pushed down half flight of stairs onto frozen ground, fall down full flight of stairs, several more falls, multiple fractures (3 pelvic), and the list goes on. Makes one wonder. Warm regards, Sunnyflower

REPLY
@jeffrapp

Hi all
This is my story.
I am 75. Up until about 3 years ago, I was (I thought) remarkably healthy for my age. I was skiing, road biking long distances, hiking, etc.
I was having the usual old guy's problems with urination, and eventually decided to have a procedure done. My urologist ordered a CT scan of my belly, and, to his and my surprise, discovered a large tumor (lymphoma) on my small intestines, and numerous other tumors on both kidneys.
Long story short, the lymphoma was resected, turned out to be very slow growing type. I probably had it for years. The kidney tumors were unrelated, and were determined to be something rare (onchocytoma), and not malignant, so they're still in there.
BTW, I finally had the prostate surgery, which went well, except that I was found to also have prostate cancer, but again, the very slow growing type. All these conditions are simply being watched for development
For years, I had been noticing strange feelings in my feet. They felt like they were sweating, but weren't. This started happening when wearing shoes without socks.
Around the same time as my surgery , the feelings in my feet began to get worse, to the point where I couldn't wear any shoes or socks without experiencing severe burning. Finally, I got what was going on, saw neurologists at UCSF, had the million dollar workup, including skin biopsy, and was diagnosed with small fiber neuropathy of unknown cause.
I've tried almost every medication in the book, and can't honestly say that any have helped much. Currently, I'm on 150 mg of Lyrica at night (I tapered down from 450 mg daily, just to see what happens, and honestly, I can't say for sure). I'm also on Cymbalta. I have tried tramadol (doesn't work for me), gabapentin (as expected, same as Lyrica), low dose Naltrexone (who knows) and various supplements, vitamins, acupuncture, gadgets, the entire catastrophe.
Ironically, with all these diagnoses, the only thing that bothers me is the peripheral neuropathy, which has put the kaboom on half my life.
I'm trying my best to live as much of my life as I can. In particular, I am still able to ride fairly long distances on my bike, which I do whenever I can.
What I tell friends who I suspect may have PN is that they should see a neurologist soon. If they're lucky enough to have a treatable cause, the sooner the better. Also, it is helpful to have an expert do the workup. As we know, the disease is complicated and tricky to diagnose and treat. It's also helpful to understand that with these types of diseases, it's not at all unusual for medical providers to sometimes not act as well as we would like. Some even dread seeing patients with these types of chronic pain problems. So, don't take it personally, or allow it to make you angry. That doesn't help.
I had to quit a very satisfying (although part time) job simply because I couldn't wear shoes and socks. I've also had to quit numerous recreational activities, as noted above.
Regarding social interactions, I have less than before. Some of this is because sometimes, I don't feel well enough to go, or the venue will make me uncomfortable. I was a life long serious traveler. but I hardly travel at all now. Also, I have grown tired of having to explain to people what's wrong with me. I look like a healthy 75 y/o man. People's eyes glaze over, and I feel I'm boring them. Ironically, I often feel better in company when I finally participate, probably because I am distracted from the pain. This has led me to trying to learn how to distract myself.
It's mostly our responsibility to find out what helps. It's almost always different for each person. There are ways to feel better. We have to do the work and experiments to find them.
Hope this helps.
Jeff

Jump to this post

Jeff, since you didn't post a reply, I just wanted to see if you read my post to you which I placed over on the other neuropathy discussion regarding your situation and a product called Penetrex. In case you did not, you may want to go over there and read it or at least check out this link and read the review. It might be something you have not tried and perhaps could be of some benefit to you, hopefully. Best regards, Hank
https://smile.amazon.com/gp/customer-reviews/R22GGW9IZXH7X9/ref=cm_cr_getr_d_rvw_ttl?ie=UTF8&ASIN=B071NWDQQ7

REPLY
Please sign in or register to post a reply.
  Request Appointment