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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

barbbie | @barbbie | Jun 22, 2020
In reply to @mertgraves "Thanks for welcoming me to the group. Im curious to see if any has a clue..." + (show)
@mertgraves

Thanks for welcoming me to the group. Im curious to see if any has a clue about my problem. My right foot and basically the right 3 toes and and foot base directly behind them feel like they are huge and I have a big lump of newspaper wadded up behind my toes.. When I put a shoe or sock on it gets even worse. I walk everyday but it doesnt change anything, just simply feels as if it is getting bigger.When I lay down the ache seems to move up my leg and into my hip. I wake up approximately every 15-20 minutes with severe cramp/ charlie horses all night long. The only relief is to get up and put weight on the leg. I have been to several doctors,the whole gammit at orthopedic doctors and had a nerve conduction test, steroid shots into my back and hip of which none helped at all. The doctors leave me feeling as if its all in my head. Yes I have had a back fusion surgery 3 years ago however this was happening prior to that.I dont feel as if this is just really in my head as it waked me up in the middle of the night all night long. Have others had this same issue? Have you ever found a doctor to help? If so What type doctor do you recommend. Im so sick of this and Hope you guys might can enlighten me. Thanks for any help in advance

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Hi Mert. I have small fiber neuropathy dx by two biopsies in both feet and hands. I also have complex regional pain syndrome in both feet and left leg. I just asked my primary care about muscle cramps and he told me to get magnesium citrate which I haven't done yet! I can also relate to laying down and the pain in my calf and thigh and butt. Have had injections in sciatic nerve that have helped for a while.. I find neurologists useless and was told the same as you IAIYH. I have been seeing a pain management doctor for eight years now who is absolutely brilliant. I have had a spinal cord stimulator for eight years and find it helpful, more so for some areas than for others. My foot pain is the worst. A botched foot surgery by an orthopedic surgeon caused my complex regional pain syndrome (CRPS). My pain management doc is very knowledgeable about CRPS. Perhaps someone near you knows more about CRPS than most. It might be a place to look. If there is more you'd like me to share, I'd be happy to. Blessings, Barb

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2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Jun 22, 2020
In reply to @mathewv "Thanks John. I'm trying to focus exclusively on success stories or treatments that have helped people...." + (show)
@mathewv

Thanks John. I'm trying to focus exclusively on success stories or treatments that have helped people. Or perhaps info on the latest medical breakthroughs, if any. Any promising new procedures/treatments?

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@mathewv

I think I can truthfully say that a high percentage of people with pn have found relief of some kind. At this point, the closest to reversing the progress of pn is to slow it down. There's no known cure for it yet, though many scientists and drug companies are working on it, with clinical trials happening all the time.

Until a cure is discovered the primary goal is symptom management. The list of treatments is a long one. I have tried every medication that's designed for neuropathy, with varying degrees of success. Some did nothing and had no side effects. Some did nothing but had unacceptable side effects. Some did deliver pain relief but had unacceptable side effects.

That leaves me with the treatments that game significant pain relief with manageable side effects. The one medication that has consistently over the past five years reduce my pain level is morphine sulfate contin. I continue to take it. As I was increasing the dosage of Lyrica I was enjoying pretty significant pain reduction - until the side effects put me in the hospital for a few days. Bummer. Lyrica is a great medication for many people.

Last year, my pain specialist prescribed Desipramine, with some success, until urinary urgency kicked in, and I was making up to 24 trips to the bathroom one day. So, the doctor moved on to Imipramine last September. Within a week my overall level of pain went down from 7 to 4 or less. I enjoyed it while it lasted. By the first of this year, my level is back up to 7-8. I haven't tried tapering off it yet to see what that would do to my pain.

The treatment that gave me a pain reduction of 75-80% is a Burst DR spinal cord stimulator implant. I had the implant in June of 2015, and I still have it. For two years my pain level was low quite consistently. Third and fourth years, I needed to have the settings adjusted every three months. Now, I'm starting year five. To test its efficacy I turned the stimulator off for the month of March, and felt no change. I turned it back on in April, again with no change in the pain level.

My next step may be a Dorsal Root Ganglion stimulator implant, which is a new technology that is able to target specific nerves more precisely. I have an appointment next week with a neurospecialist to discuss this.

So, the first answer to your question is, "No". There's no known treatment that would reverse neuropathy.
The next point is that yes, there are treatments that could slow, or possibly stop the progress of neuropathy. The next point is that at this time, the focus of doctors is symptom management, and for most, any treatment option will probably be a temporary fix.

Bottom line is that a medication that helps 25% or 75% of the pn population may do nothing or may have serious side effects for the rest.

That's probably not what you want to hear, but it's a reality that we who have a form of neuropathy have to face. We all hope for the day when a definitive cure goes on the market. Have you been diagnosed with neuropathy, and if so, what sort of symptoms do you have? Other members of this discussion can offer you their experiences, some of which might help you.

Jim

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maryflorida | @maryflorida | Jun 23, 2020
In reply to @barbbie "Hi Mert. I have small fiber neuropathy dx by two biopsies in both feet and hands...." + (show)
@barbbie

Hi Mert. I have small fiber neuropathy dx by two biopsies in both feet and hands. I also have complex regional pain syndrome in both feet and left leg. I just asked my primary care about muscle cramps and he told me to get magnesium citrate which I haven't done yet! I can also relate to laying down and the pain in my calf and thigh and butt. Have had injections in sciatic nerve that have helped for a while.. I find neurologists useless and was told the same as you IAIYH. I have been seeing a pain management doctor for eight years now who is absolutely brilliant. I have had a spinal cord stimulator for eight years and find it helpful, more so for some areas than for others. My foot pain is the worst. A botched foot surgery by an orthopedic surgeon caused my complex regional pain syndrome (CRPS). My pain management doc is very knowledgeable about CRPS. Perhaps someone near you knows more about CRPS than most. It might be a place to look. If there is more you'd like me to share, I'd be happy to. Blessings, Barb

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Barb, that is exactly where I am. Foot pain is the worst, especially "frozen" feet, but the pain is moving around all over my body, including arms, legs, high back, low back, and ankles. Injections did help me for awhile too. My primary sent me to a rheumatologist but she is doing tests I have had done before to no avail. Latest is bone density, but I think you can tell when it is not the bones, when the pain is nerves and muscles... Discouraged, but whatever you can share is helpful. Thank you.

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2 replies
mertgraves | @mertgraves | Jun 23, 2020
In reply to @barbbie "Hi Mert. I have small fiber neuropathy dx by two biopsies in both feet and hands...." + (show)
@barbbie

Hi Mert. I have small fiber neuropathy dx by two biopsies in both feet and hands. I also have complex regional pain syndrome in both feet and left leg. I just asked my primary care about muscle cramps and he told me to get magnesium citrate which I haven't done yet! I can also relate to laying down and the pain in my calf and thigh and butt. Have had injections in sciatic nerve that have helped for a while.. I find neurologists useless and was told the same as you IAIYH. I have been seeing a pain management doctor for eight years now who is absolutely brilliant. I have had a spinal cord stimulator for eight years and find it helpful, more so for some areas than for others. My foot pain is the worst. A botched foot surgery by an orthopedic surgeon caused my complex regional pain syndrome (CRPS). My pain management doc is very knowledgeable about CRPS. Perhaps someone near you knows more about CRPS than most. It might be a place to look. If there is more you'd like me to share, I'd be happy to. Blessings, Barb

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Thanks Barb. I will definitely try the magnesium. thanks again

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mertgraves | @mertgraves | Jun 23, 2020
In reply to @maryflorida "Barb, that is exactly where I am. Foot pain is the worst, especially "frozen" feet, but..." + (show)
@maryflorida

Barb, that is exactly where I am. Foot pain is the worst, especially "frozen" feet, but the pain is moving around all over my body, including arms, legs, high back, low back, and ankles. Injections did help me for awhile too. My primary sent me to a rheumatologist but she is doing tests I have had done before to no avail. Latest is bone density, but I think you can tell when it is not the bones, when the pain is nerves and muscles... Discouraged, but whatever you can share is helpful. Thank you.

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Hi Mary, so thankful to hear it's not just me. Will definitely be following up.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jun 24, 2020
In reply to @maryflorida "Barb, that is exactly where I am. Foot pain is the worst, especially "frozen" feet, but..." + (show)
@maryflorida

Barb, that is exactly where I am. Foot pain is the worst, especially "frozen" feet, but the pain is moving around all over my body, including arms, legs, high back, low back, and ankles. Injections did help me for awhile too. My primary sent me to a rheumatologist but she is doing tests I have had done before to no avail. Latest is bone density, but I think you can tell when it is not the bones, when the pain is nerves and muscles... Discouraged, but whatever you can share is helpful. Thank you.

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@maryflorida, Good afternoon. I just opened a discussion about "frozen" feet. If I didn't know better right now, I would think my feet were frozen in a block of ice. What are you using to get back to normal?
Be safe and protected.
Chris

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 24, 2020
In reply to @artscaping "@maryflorida, Good afternoon. I just opened a discussion about "frozen" feet. If I didn't know better..." + (show)
@artscaping

@maryflorida, Good afternoon. I just opened a discussion about "frozen" feet. If I didn't know better right now, I would think my feet were frozen in a block of ice. What are you using to get back to normal?
Be safe and protected.
Chris

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@maryflorida here is the new discussion @artscaping created.

Icy feet and ankles with Small Fiber Neuropathy....anyone?
-- https://connect.mayoclinic.org/discussion/icy-feet-and-ankles-with-small-fiber-neuropathy-anyone/

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mertgraves | @mertgraves | Jun 25, 2020
In reply to @jimhd "@mertgraves I suppose it was a neurologist who did the nerve conduction test. Did you also..." + (show)
@jimhd

@mertgraves I suppose it was a neurologist who did the nerve conduction test. Did you also have a skin puncture test? I would be pressing the neurologist to consider other tests for peripheral neuropathy. The symptoms you're describing are quite similar to what I felt in the early stages of pn.

Are you feeling other unusual things, such as numbness in your hands, tingling or pins and needles. Looking online at what the signs and symptoms of PN might be helpful.

How long ago did you have the nerve conduction test? Maybe another neurologist would see things others have missed. He/she should suggest further tests.

May you find some useful answers soon.

Jim

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Thank you. I do have the feelings in my hands and arms as well. Yes I have had the test done just recently and have also gone back to my Primary. She has referred me to another Nuerologist as she says It appears I have lost at least 50% of the strength in my right leg and foot. Hopefully someone can get an idea of what to do with me.

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1 reply
mertgraves | @mertgraves | Jun 25, 2020
In reply to @jesfactsmon "Hi @mertgraves and welcome from me as well. I often read posts with interest but absolutely..." + (show)
@jesfactsmon

Hi @mertgraves and welcome from me as well. I often read posts with interest but absolutely zero knowledge of reasons for a person's condition as well as no experience with same. With that said, my mother has had severe leg cramps for years which she treats by drinking quinine water before bedtime. This is a well known treatment for charlie horse I know but just thought I'd throw it out there just in case you might not have tried it. It also probably won't help your other symptoms. But I hope you are able to find help and relief from your issue in any case. Best, Hank

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Thank you, My primary told to me to start drinking tonic water as it is Quinine until I can see the next neurologist. She has also prescribed a low dose of Baclofen for nerve spasms to take at bedtime.

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wisfloj | @wisfloj | Jun 25, 2020

That’s good news, I do enjoy vodka & tonic! 😋 just lightening the mood. But yes, this is not fun and symptoms change throughout the day/week. I am back to this group after months away, caring people with knowledge and opinions to share!

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