1. < Neuropathy
Mentor

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.

Mentor
Jim, Volunteer Mentor | @jimhd | May 8, 2021
In reply to @ray666 "It appears this topic has been left untouched for quite some time. It seems an excellent..." + (show)
@ray666

It appears this topic has been left untouched for quite some time. It seems an excellent topic, especially for someone like me who has had his first visit to a neurologist only this past Monday. Although I've yet to receive a clear-cut diagnosis, I would welcome hearing from others what their early "suspicions" were, suspicions that eventually led to a peripheral neuropathy diagnosis.

For me, long before I even heard of PN (ten years ago?), I noticed that myusual good balance was going wonkers, especially at low-light times of day (dawn, twilight). I hadn't had any falls, or at least none that I thought might have been the onset of a Big Problem. Doctors, of course, always ask if you've balance concerns. If I answered 'yes,' the response was ordinarily along the lines of 'Ah, vertigo!' or "Dizziness, I see.' I'h have to protest: 'No, no, I've never felt dizzy. The room was never going round and round.' I found it maddening to come up with the right words to describe the sensation. Eventually, I did––or I came as close as I probably ever will: 'It feels like I'm walking on a ship's deck in a rolling sea––not a storm-tossed sea, just a rolling sea–––and I have a tough time walking a straight line.'

Over the years, I've seen many physical therapists. Even though they'd nod when I'd use mu rolling sea analogy. I'm convinced they thought 'Ah, vertigo!––or (sigh!) old age. (I'm 76.) It's been a long haul, leading up to my finally seeing a neurologist. Although I've yet to receive a diagnosis of PN, I know that's what she suspects. If it turns out all I have is old age (no surprise there), I'll be a happy camper. If it is PN … well, that's why I joined this forum.

Wishing you all well!
Ray

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@ray666 My first indication that something was going on was a tingling sensation in my feet and legs. After some time I went to the neurologist, who did a nerve conduction test and determined that I had pn. Over the past ten years, the diagnosis has been refined as it moved on to pain, then burning in the balls of my feet, and slowly included the tops and bottoms of my feet. Several months ago pain moved up into my ankles. Tingling and pins and needles have been the first sign in each area, and those sensations now are above my knees.

There are quite a few kinds of neuropathy, with different symptoms. I don't know if balance is typical of pn, but for me, it's one of several signs of another neuropathy, autonomic neuropathy.

Have you had other symptoms beside balance? What tests did your neurologist do? I like the way you described your "vertigo" as standing on a ship. I need to remember that because I have a hard time describing it to my doctors.

Jim

REPLY
1 reply
Ray Kemble | @ray666 | May 8, 2021
In reply to @jimhd "@ray666 My first indication that something was going on was a tingling sensation in my feet..." + (show)
@jimhd

@ray666 My first indication that something was going on was a tingling sensation in my feet and legs. After some time I went to the neurologist, who did a nerve conduction test and determined that I had pn. Over the past ten years, the diagnosis has been refined as it moved on to pain, then burning in the balls of my feet, and slowly included the tops and bottoms of my feet. Several months ago pain moved up into my ankles. Tingling and pins and needles have been the first sign in each area, and those sensations now are above my knees.

There are quite a few kinds of neuropathy, with different symptoms. I don't know if balance is typical of pn, but for me, it's one of several signs of another neuropathy, autonomic neuropathy.

Have you had other symptoms beside balance? What tests did your neurologist do? I like the way you described your "vertigo" as standing on a ship. I need to remember that because I have a hard time describing it to my doctors.

Jim

Jump to this post

Hello, @jimhd. Thanks for writing.

My first sensations were and continue to be exclusively balance, the ol' wobbly gait. Since it began "quietly," I didn't pay it much attention. That may be as much as 10 years ago. I say it's gotten worse because it has, but not because of pain or tingling or a lessening of sensation in my feet. I've often chalked it up to "bad knees."

I've terrible knees. the right one is an implant, but I've lots of arthritic achiness around the implant; the left knee is my "birth" knee (ha!), and it too is smitten with arthritis. Couple bad knees to severely flat feet and you have got a recipe for locomotion problems. Until recently, that's what I thought my balance issues are caused by: locomotion problems, thanks to the knees and feet.

And it may still be that what's causing my wobbly gait. Or it may be some strain of PN. (My brother had diagnosed PN. He also had no sensation in the bottoms of his feet and lots of pain up and down his legs.)

"Standing on a ship in a rolling sea" is the best I've come up with. I thought of it one night in a heaving sea when I wasn't feeling wobbly otherwise. Waling the deck and having to catch myself from pitching right or left, I thought, Whoa! This is exactly what it feels like when my balance s all screwy!

Again, Jim, thanks for getting in touch. Let's talk again one of these days. It's nice to know I'm not alone in this!

Cheers!
Ray

REPLY
bryanbay | @bryanbay | May 10, 2021
In reply to @johnbishop "I started my journey with neuropathy when I was in my early 50s, with some numbness..." + (show)
@johnbishop

I started my journey with neuropathy when I was in my early 50s, with some numbness that started in my toes on both feet. I mostly ignored it because there was no pain and I really didn’t think much about it. After a few years, the numbness progressed to the bottoms of both feet and I mentioned it to my primary care doctor who said it could be nerve damage. He said they could run some tests and determine if it was nerve damage. I asked if they determine if it is nerve damage what can be done. I was surprised when he mentioned there was not any treatment that will help with numbness.

The numbness gradually increased over the years and in my early 70s the numbness had progressed to just below my knees. It was at this point that I was worried about my mobility and what the future would hold so I talked with my primary care doctor who helped me get an appointment with a neurologist. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20 years ago.

After I received my diagnosis of small fiber PN I was trying every topical cream available that said it would help neuropathy with zero results. Then I found a book by Dr. Terry Wahls, The Wahls Protocol. She shared how using functional medicine and nutrient rich foods helped her treat her symptoms of multiple sclerosis and get her life back. This started my journey on looking at nutrition as a possible treatment for my neuropathy.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it is up to you to do your own research and avoid scams. Fortunately, there is a lot of information on how to avoid scams but it is out of sight, out of mind for a lot of folks. Here are the ones I have used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page:
-- https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it:
-- https://nccih.nih.gov/health/decisions

That said, I have found a protocol of supplements developed by fellow neuropathy patients that works for me and has helped others with PN get off the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was high.

You can read more about it in this discussion:

Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I have not made any more progress, but I am OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Recently I have seen some feeling return to my feet at different times during the day which gives me some hope of more progress and a new normal.

I’ve been a member of Mayo Clinic Connect since 2016. And it gives me great comfort to talk with others, share ideas and information, not only here in the Neuropathy group, but also in other groups as new health questions come up, like managing PMR, getting a knee replacement, a CPAP, etc. Ahh, the joys of aging. Hey, if you qualify ;-), you might also want to join me in this group on Connect: Aging Well. (See all 70+ Groups on Mayo Clinic Connect here: https://connect.mayoclinic.org/groups/)

What’s your neuropathy story?

Jump to this post

My neuropathy began in my late 50's as minor numbness on the soles and did not initially require medication. It has progressed in four years and now there is considerable foot pain and numbness, to the point where walking is difficult. Nerve conduction tests confirmed neuropathy but addition tests found no root cause so I'm considered to be idiopathic. I'm under care of a neurologist and I take 300mg gabapentin x 4 daily and 20mg amitriptyline daily but these do not provide relief. Not sure what the future holds. I joined this group hoping to learn from others with this condition.

REPLY
3 replies
Leonard | @jakedduck1 | May 10, 2021
In reply to @bryanbay "My neuropathy began in my late 50's as minor numbness on the soles and did not..." + (show)
@bryanbay

My neuropathy began in my late 50's as minor numbness on the soles and did not initially require medication. It has progressed in four years and now there is considerable foot pain and numbness, to the point where walking is difficult. Nerve conduction tests confirmed neuropathy but addition tests found no root cause so I'm considered to be idiopathic. I'm under care of a neurologist and I take 300mg gabapentin x 4 daily and 20mg amitriptyline daily but these do not provide relief. Not sure what the future holds. I joined this group hoping to learn from others with this condition.

Jump to this post

@bryanbay
Good afternoon,
You might want to ask your physician if an increase in gabapentin could provide better pain relief. The usual dose for Neuropathy is 1800mg & up although I’ve known people who took less and up to 7000mg.
I took 3600mg and it had no effect on my Neuropathy or seizures. My brother takes 3200mg and its very effective for him.
Good luck,
Jake

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 10, 2021
In reply to @bryanbay "My neuropathy began in my late 50's as minor numbness on the soles and did not..." + (show)
@bryanbay

My neuropathy began in my late 50's as minor numbness on the soles and did not initially require medication. It has progressed in four years and now there is considerable foot pain and numbness, to the point where walking is difficult. Nerve conduction tests confirmed neuropathy but addition tests found no root cause so I'm considered to be idiopathic. I'm under care of a neurologist and I take 300mg gabapentin x 4 daily and 20mg amitriptyline daily but these do not provide relief. Not sure what the future holds. I joined this group hoping to learn from others with this condition.

Jump to this post

Hello @bryanbay, I would like to add my welcome to Connect along with @jakedduck1 and others. Sorry to hear the medications do not provide any relief from your neuropathy pain in your feet. My small fiber PN was also diagnosed as idiopathic but there are no medications that help with numbness so I started doing my own research until I found something that has helped me. I shared my story and what helps me earlier in this discussion here - https://connect.mayoclinic.org/comment/310341/.

It's good that you are doing your own research and trying to learn more about your condition. The more you learn, the better you will be able to advocate for yourself and hopefully find something that helps. Have you thought about or tried any alternative or complementary therapies to help with the neuropathy?

REPLY
1 reply
bryanbay | @bryanbay | May 10, 2021
In reply to @johnbishop "Hello @bryanbay, I would like to add my welcome to Connect along with @jakedduck1 and others...." + (show)
@johnbishop

Hello @bryanbay, I would like to add my welcome to Connect along with @jakedduck1 and others. Sorry to hear the medications do not provide any relief from your neuropathy pain in your feet. My small fiber PN was also diagnosed as idiopathic but there are no medications that help with numbness so I started doing my own research until I found something that has helped me. I shared my story and what helps me earlier in this discussion here - https://connect.mayoclinic.org/comment/310341/.

It's good that you are doing your own research and trying to learn more about your condition. The more you learn, the better you will be able to advocate for yourself and hopefully find something that helps. Have you thought about or tried any alternative or complementary therapies to help with the neuropathy?

Jump to this post

Thank you John. I am considering alternative therapies.

REPLY
bryanbay | @bryanbay | May 10, 2021
In reply to @jakedduck1 "@bryanbay Good afternoon, You might want to ask your physician if an increase in gabapentin could..." + (show)
@jakedduck1

@bryanbay
Good afternoon,
You might want to ask your physician if an increase in gabapentin could provide better pain relief. The usual dose for Neuropathy is 1800mg & up although I’ve known people who took less and up to 7000mg.
I took 3600mg and it had no effect on my Neuropathy or seizures. My brother takes 3200mg and its very effective for him.
Good luck,
Jake

Jump to this post

Thank you Jake, I will follow up on the dosage. It seems I have a bit of headroom.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | May 12, 2021
In reply to @bryanbay "My neuropathy began in my late 50's as minor numbness on the soles and did not..." + (show)
@bryanbay

My neuropathy began in my late 50's as minor numbness on the soles and did not initially require medication. It has progressed in four years and now there is considerable foot pain and numbness, to the point where walking is difficult. Nerve conduction tests confirmed neuropathy but addition tests found no root cause so I'm considered to be idiopathic. I'm under care of a neurologist and I take 300mg gabapentin x 4 daily and 20mg amitriptyline daily but these do not provide relief. Not sure what the future holds. I joined this group hoping to learn from others with this condition.

Jump to this post

@bryanbay None of the usual pn meds helped me, including Cymbalta. A few months ago I restarted Cymbalta at 90mg at bedtime, but backed down to 60mg because of the awful muscle twitching. After a few weeks, I added 30mg in the morning, and I got a note from my neurologist this morning, suggesting that I increase it to 120mg, spread over the day. Lyrica helped a lot, but reactions sent me to the hospital, so I can't take it, though it's worked for a lot of people. My siblings all say that Gabapentin treated their pn pain.

So, we can't ever assume that what helps others will help us.

One thing I did was to meet with a pain therapist a couple of years ago for 6 sessions, and a couple of things she suggested still help me (some of the time). One thing I do is to focus on the pain and analyze the various sensations. Then I focus on the sensations that aren't pain. Another thing is to focus on a part of the body that feels good, with no pain.

Have you considered a pain therapist?

Jim

REPLY
1 reply
bryanbay | @bryanbay | May 13, 2021
In reply to @jimhd "@bryanbay None of the usual pn meds helped me, including Cymbalta. A few months ago I..." + (show)
@jimhd

@bryanbay None of the usual pn meds helped me, including Cymbalta. A few months ago I restarted Cymbalta at 90mg at bedtime, but backed down to 60mg because of the awful muscle twitching. After a few weeks, I added 30mg in the morning, and I got a note from my neurologist this morning, suggesting that I increase it to 120mg, spread over the day. Lyrica helped a lot, but reactions sent me to the hospital, so I can't take it, though it's worked for a lot of people. My siblings all say that Gabapentin treated their pn pain.

So, we can't ever assume that what helps others will help us.

One thing I did was to meet with a pain therapist a couple of years ago for 6 sessions, and a couple of things she suggested still help me (some of the time). One thing I do is to focus on the pain and analyze the various sensations. Then I focus on the sensations that aren't pain. Another thing is to focus on a part of the body that feels good, with no pain.

Have you considered a pain therapist?

Jim

Jump to this post

Thanks @jimhd, After some googling it appears Cymbalta and Amitriptyline (Elavil) are both used to reduce pn pain. I suspect its an either/or when it comes to those two meds. There are no side effects so far with the amitriptyline. I agree with your thought that each of us will find the drug combo that works best. I'm edging the gabapentin daily dose up from 1200 to 1500mg/day. So far, I have not considered a pain therapist, but will look into it.
Tony

REPLY
1 reply
suzanne2 | @suzanne2 | May 14, 2021
In reply to @bryanbay "Thanks @jimhd, After some googling it appears Cymbalta and Amitriptyline (Elavil) are both used to reduce..." + (show)
@bryanbay

Thanks @jimhd, After some googling it appears Cymbalta and Amitriptyline (Elavil) are both used to reduce pn pain. I suspect its an either/or when it comes to those two meds. There are no side effects so far with the amitriptyline. I agree with your thought that each of us will find the drug combo that works best. I'm edging the gabapentin daily dose up from 1200 to 1500mg/day. So far, I have not considered a pain therapist, but will look into it.
Tony

Jump to this post

I am on 1800 mg of gabapentin for my pn pain. I am not happy with the side effects but can't tolerate the pain without it! I also go to a pain clinic for trigger point injections and lidocaine infusion once a month. They are lifesavers! I can tell when it is getting close to needing the treatments, my pain level begins to escalate. Today I get the injections and can hardly wait. That says a lot because I actually hate needles. But the relief overrides my fear!

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