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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@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

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@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

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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

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@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

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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

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@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

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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
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In the spring of 2015, I went to the doctor for a sinus infection and mentioned that my feet get warm at night. The doctor ignored my sinus infection and used a tuning fork to check my feet. The doctor said I most likely had peripheral neuropathy and to see a neurologist. Before my neurologist appoint my feet started hurting in the evenings and I was taking hydrocodone for the pain. The neurologist did a biopsy and confirmed I had small fiber peripheral neuropathy in both feet. He said there was no cure, it would only get worse and that it would not kill me. My uncle, brother and sister all had peripheral neuropathy. For treatment I was on Gabapentin 900mg three times a day and it did nothing for the pain. They tried several other medications along with pain creams and none of them work on me. Gabapentin works great for my brother. The only thing that helps me is pain pills. I take Methadone HCL 10mg three times a day. If the pain gets bad, I wear cotton socks soaked in cold water for immediate relief. Exercise and a low carb diet also help with the pain.

The neurologist was correct, the pain has only gotten worse over the years. It hurts to stand or walk for more than 30 seconds. The longer I am on my feet the worse the pain gets. I must ride a scooter to shop. It took a couple of years of depression and counseling for me to be comfortable riding a scooter in public. It doesn’t’ bother me to ride it know. I had to by a portable scooter since only a few stores provide them.

I have had insulin resistance since ~2011. I worked out regularly for years and I am only a few pounds overweight.

My current pain management doctor is going to try installing neuro stimulators on both my feet. He did some tests and believes that will help with the ~50% of the pain.

This is my store and I’m sticking to it.

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@jesfactsmon

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

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Hi Hank
Sorry for not replying. I get so many posts from this forum that I likely miss some.
Thanks so much fro the suggestion. I just ordered some.
I'll post if it works for me, although I'm a bit skeptical by now, having tried so many things.
Stay healthy. Thanks again!

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@fredjan2016

In the spring of 2015, I went to the doctor for a sinus infection and mentioned that my feet get warm at night. The doctor ignored my sinus infection and used a tuning fork to check my feet. The doctor said I most likely had peripheral neuropathy and to see a neurologist. Before my neurologist appoint my feet started hurting in the evenings and I was taking hydrocodone for the pain. The neurologist did a biopsy and confirmed I had small fiber peripheral neuropathy in both feet. He said there was no cure, it would only get worse and that it would not kill me. My uncle, brother and sister all had peripheral neuropathy. For treatment I was on Gabapentin 900mg three times a day and it did nothing for the pain. They tried several other medications along with pain creams and none of them work on me. Gabapentin works great for my brother. The only thing that helps me is pain pills. I take Methadone HCL 10mg three times a day. If the pain gets bad, I wear cotton socks soaked in cold water for immediate relief. Exercise and a low carb diet also help with the pain.

The neurologist was correct, the pain has only gotten worse over the years. It hurts to stand or walk for more than 30 seconds. The longer I am on my feet the worse the pain gets. I must ride a scooter to shop. It took a couple of years of depression and counseling for me to be comfortable riding a scooter in public. It doesn’t’ bother me to ride it know. I had to by a portable scooter since only a few stores provide them.

I have had insulin resistance since ~2011. I worked out regularly for years and I am only a few pounds overweight.

My current pain management doctor is going to try installing neuro stimulators on both my feet. He did some tests and believes that will help with the ~50% of the pain.

This is my store and I’m sticking to it.

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Hi Fredjan, So sorry to hear about your condition. I to am prediabetic and pain in both feet began a month ago. The doctors thought it was due to a pinched nerve at L5/S1 but I had surgery in March this year to fix that problem but the pain has only gotten worse since then. It has been less than 2 months since the surgery so the nerve is still healing according to the surgeon. Gaba did not work for me. I'm now on a wait list to see the neurologist for another nerve conduction test and a consult on what medication might work. I'm curious about the neuro stimulators your Dr. is recommending. Could you please be more specific so I could bring it up with my Dr? There are several different devices and some require electric stimulation of the nerves in the spine that are causing the problem.
Thanks
James

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@fredjan2016

In the spring of 2015, I went to the doctor for a sinus infection and mentioned that my feet get warm at night. The doctor ignored my sinus infection and used a tuning fork to check my feet. The doctor said I most likely had peripheral neuropathy and to see a neurologist. Before my neurologist appoint my feet started hurting in the evenings and I was taking hydrocodone for the pain. The neurologist did a biopsy and confirmed I had small fiber peripheral neuropathy in both feet. He said there was no cure, it would only get worse and that it would not kill me. My uncle, brother and sister all had peripheral neuropathy. For treatment I was on Gabapentin 900mg three times a day and it did nothing for the pain. They tried several other medications along with pain creams and none of them work on me. Gabapentin works great for my brother. The only thing that helps me is pain pills. I take Methadone HCL 10mg three times a day. If the pain gets bad, I wear cotton socks soaked in cold water for immediate relief. Exercise and a low carb diet also help with the pain.

The neurologist was correct, the pain has only gotten worse over the years. It hurts to stand or walk for more than 30 seconds. The longer I am on my feet the worse the pain gets. I must ride a scooter to shop. It took a couple of years of depression and counseling for me to be comfortable riding a scooter in public. It doesn’t’ bother me to ride it know. I had to by a portable scooter since only a few stores provide them.

I have had insulin resistance since ~2011. I worked out regularly for years and I am only a few pounds overweight.

My current pain management doctor is going to try installing neuro stimulators on both my feet. He did some tests and believes that will help with the ~50% of the pain.

This is my store and I’m sticking to it.

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I use curcumin which contains turmeric with some relief.

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@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.

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in reply to rwinney, I have the same frustration. I have all the symptoms of sfn and one doctor said that is what it is, but no one seems to feel I should have the skin biopsy. Who did it for you? I also have 100% of the symptoms of polymyalgia rheumatica, but still don't know who to take care of me. My primary doctor is sending me to a rheumatologist in early June, but I went to one two years ago and she told me she didn't know what to do for me except to prescribe Lyrica which put into the ER. My question: is this the right specialist to see, i.e., a rheumatologist?

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@maryflorida

in reply to rwinney, I have the same frustration. I have all the symptoms of sfn and one doctor said that is what it is, but no one seems to feel I should have the skin biopsy. Who did it for you? I also have 100% of the symptoms of polymyalgia rheumatica, but still don't know who to take care of me. My primary doctor is sending me to a rheumatologist in early June, but I went to one two years ago and she told me she didn't know what to do for me except to prescribe Lyrica which put into the ER. My question: is this the right specialist to see, i.e., a rheumatologist?

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Hi @maryflorida, I thought I would jump in and offer some information I've found that may be helpful. A rheumatologist diagnosed my polymyalgia rheumatica (PMR) and a neurologist diagnosed my small fiber peripheral neuropathy.

What is a Rheumatologist?: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Health-Care-Team/What-is-a-Rheumatologist
What is a neurologist?: https://www.medicalnewstoday.com/articles/326717#about

And something that really jumped out at me -- What Our Colleagues Should Know: Neurologists & Rheumatologists Must Communicate:
-- https://www.the-rheumatologist.org/article/colleagues-know-neurologists-rheumatologists-must-communicate/

You mentioned in your first post that your rheumatologist prescribed the Gabapentin and that made you sick and then they prescribed Lyrica and that sent you to the ER. It might be helpful to write down a list of all your symptoms and maybe keep a daily log of your pain levels along with any questions you have for the rheumatologist. One question I would have for the rheumatologist or neurologist for any drug that is prescribed - how does this drug work to treat my symptoms?

Can you update us on how your appointment goes with the rheumatologist in June?

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