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.

@cneubauer

Good morning, I am new to the group and I have spent the last hour or so reading all of my fellow group members posts. I want to start off by saying that I appreciate all of you sharing your experiences, it has given me a wealth of information regarding peripherical neuropathy. I am currently 71 yrs. old. My story began approximately 10 yrs ago, on vacation after a busy day on my feet on tours, I had trouble putting on my shoes to wear for dinner. The following year I experienced several falls, one resulting in a concussion, followed by several more falls. My Primary Physician referred me to a neurologist and an otolaryngologist to seek out issues that might be contributing to the falls. I was diagnosed through testing by the neurologist through nerve testing and blood tests with peripherical neuropathy in my lower legs and feet. The otolaryngologist discovered and treated an imbalance in middle ear due to the falls which was corrected. I was began a regimen of supplements. My major problem is my feet feeling swollen and cold all the time. I am working with my imbalance issues, through Chair Yoga strengthening my leg muscles and standing with holding chair balance exercises. I feel breathless at times, it does limit my ability to walk long distances. We still travel, but I limit the excursions I take. Use OTC Biofreeze Gel for discomfort, socks all the time, but at times, my feet feel too cramped and sore, so go without the socks for a bit. Pressure stockings did not help. I am discouraged that my Neurologist has nothing to offer when I see him bi-yearly, just keep doing what I am doing is the message. I do pedicures once a month, and a massage quarterly to keep my skin hydrated and the muscles stimulated. I hope sharing my experience has helped anyone.

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Welcome @cneubauer, Thanks for sharing your experience and what's helped you. Neuropathy is definitely a journey with many different side trips for a lot of us. I'm also working on keeping my leg strength up with daily exercises. Most of mine is on an exercise bike since my walking is not real great. I do have the senior shuffle down really well though🙂. If you haven't already explored the Foundation for Peripheral Neuropathy website, it's a boon for learning more about neuropathy and what has helped others improve the quality of their life - https://www.foundationforpn.org/living-well/.

Do you have swelling in your feet or do they just feel like they are swollen along with being cold?

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@johnbishop Thanks for the info regarding the website, I will check it out for sure. To answer your question, my feet feel swollen, but they do not look swollen, weird! I cannot wear certain shoes that are real stiff, but those with a tad of a give I can wear, but not for long if I am doing alot of standing. I know sounds weird and does not make sense, but with trial and error I have figured out the shoe thing. I will be darned if I cannot be somewhat fashionable, lol! They feel cold, not cold like I have been out in the cold weather for an extended time, just cool I guess is a better way to describe it. As far as your balance and walking goes, do you feel like your inner part of the sole of your foot is lower than the two sides of your foot on the bottom. I know that sounds weird, but I think that is part of my balance issues, I have to make sure I keep track of where I am walking and if there is an uneven surface I have to be prepared to adapt. Also, someone made a comment along the line about the ability to use handicapped parking, I do and get funny looks sometimes, have gotten used to it.

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@onfire

Lyrics has damaged my kidneys so my doctor is reducing my dose to 150 mg. Per day. I'm down to 175 mg. and the burning pain has gotten terrible. She says that she doesn't know what to do. Her only thing was to tell me to buy lidocaine which really doesn't help much. I had a stroke which caused thalamic pain. It is similar to neuropathy but still not the same but probably treated the same. Does anyone know what might help me. Thanks in advance.

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As discussed here ~ use LDN ~ Low dose naltrexone _info here - it works for pain!
https://ldnresearchtrust.org/conditions
https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/

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@cneubauer

@johnbishop Thanks for the info regarding the website, I will check it out for sure. To answer your question, my feet feel swollen, but they do not look swollen, weird! I cannot wear certain shoes that are real stiff, but those with a tad of a give I can wear, but not for long if I am doing alot of standing. I know sounds weird and does not make sense, but with trial and error I have figured out the shoe thing. I will be darned if I cannot be somewhat fashionable, lol! They feel cold, not cold like I have been out in the cold weather for an extended time, just cool I guess is a better way to describe it. As far as your balance and walking goes, do you feel like your inner part of the sole of your foot is lower than the two sides of your foot on the bottom. I know that sounds weird, but I think that is part of my balance issues, I have to make sure I keep track of where I am walking and if there is an uneven surface I have to be prepared to adapt. Also, someone made a comment along the line about the ability to use handicapped parking, I do and get funny looks sometimes, have gotten used to it.

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I have the same, sometimes it feels like there’s a rubber band on my ankles and my feet want to blow up. They also feel cold all the time. I say they feel like they’re in ice blocks. The electrical zaps are unbearable. I am fighting it with home exercises and pt every week but I fear for the future…

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@jan64

I am awaiting results of my skin biopsy. I don't know what I want more: a negative or a positive. I have all the symptoms of peripheral neuropathy, but no proof since my MRI and EMG didn't show much except some problems with my neck and lower back (not enough to warrant surgery). I feel like people don't believe me because I look normal and continue to function (at about 25% of my previous self). I am waiting until I get new insurance to change my PCP who did nothing when my pain was off the charts. I know you wrote your experience years ago. How was the Rehab program?

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Hello @jan64. I'm sorry you're experiencing neuropathy symptoms and all that comes with. It is quite a learning curve to adapt to change or loss of function or abilities. I definitely feel your words and have compassion for you.

Indeed, it was 4 years ago (wow, already) October 26th, that I entered the pain rehab center at Mayo Clinic. PRC was one of the best experiences of my life. The program teaches a person as a whole and equips them strategies and a plan to move forward with chronic issues they have through physical, emotional, behavioral, and chemical coaching and therapies.

I was diagnosed with central sensitization which is a central nervous system syndrome causing chronic pain and or heightened sensory dysfunction. During the time neuropathy was kicking my butt, I was focused strictly on that not quite understanding there was a bigger picture. For that matter the PRC program was exactly what I needed to make the most out of how life had changed and how to find positivity and adaptation moving forward to focus on what I could do versus what I couldn't.

It appears you're on the right track and having the proper testing. I wish you good luck with the skin punch biopsy results and completely understand the perplexity of emotions and not knowing if you hope for positive or negative results. My opinion of that is to learn and understand as much as you can about your condition, be your best advocate and make sure you clearly understand from your doctors what your body is dealing with so that you can move forward with a plan. Will you report back on your results?

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@wolfie1

I have the same, sometimes it feels like there’s a rubber band on my ankles and my feet want to blow up. They also feel cold all the time. I say they feel like they’re in ice blocks. The electrical zaps are unbearable. I am fighting it with home exercises and pt every week but I fear for the future…

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@wolfie1 I totally agree with you about fear for the future.....what I hold on to is that I am doing all I can do that is suggested currently. Diet, exercise, otc meds, supplements, joining support groups like this, and keeping myself up to date on anything that could be of help to me. I also have given myself permission to be angry that I have been given this burden, and seeing my physician yearly, and getting the same old thing said to me. All these things, I feel motivates me to do everything I can possibly do to live my best life, and not be bested by my condition. Hope this helps.

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I first started having diabetic neuropathy pain a few years ago. The pain was severe, mostly at night. I came across Nerve Control 911 and started taking 2 capsules a day. I’ve done this from then until now. One doctors remedy was to start me on 5 mg. of cyclobenzaprine. 2 years later a neurologist examined me and said the cyclobenzaprine was a good move but I should add pregabalin, 75 mg. daily, to the regimen. I did that. Then thinking that I was covered by pharmaceutical drugs I could wean myself off the Nerve Control 911. So I started reducing the amount of NC911 I was taking. 4 days later, in the middle of the night, my foot pain returned! Severely! I’m back on NC911, 2 caps a day and will be on it for life. Perhaps it is the pharmaceuticals I should wean myself off of!? Will ask my doc at our next meeting.

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@cneubauer

@wolfie1 I totally agree with you about fear for the future.....what I hold on to is that I am doing all I can do that is suggested currently. Diet, exercise, otc meds, supplements, joining support groups like this, and keeping myself up to date on anything that could be of help to me. I also have given myself permission to be angry that I have been given this burden, and seeing my physician yearly, and getting the same old thing said to me. All these things, I feel motivates me to do everything I can possibly do to live my best life, and not be bested by my condition. Hope this helps.

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Thank you @cneubauer! I am continually working to improve. One of the hardest thing is coming to terms with what is now my 100%. I had hope for so long that I would be able to do everything I used to do. Just facing this finally…that being said I’m so happy to have found this group! It feels great to know people that suffer the same! I’m learning more, and so happy we all know what each other is going thru. I’m sorry for everyone that suffers and pray for all of us that a remedy is found.

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I’m wondering how many people still drive?

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@wolfie1

I’m wondering how many people still drive?

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I still drive daily and have driven six 1600 mile round trips on business in the past 5 months. I try not to drive more than two hours straight. Taking those first few steps, after driving almost any distance, is an adventure. I have had a few occasions of not recognizing the brake pedal vs the accelerator, but fortunately not caused any damages. I take great care when braking at all times.

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