Living with Neuropathy - Welcome to the group

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?

@steeldove and others

I tried every medication remotely close to effective in treating neuropathy pain, including Gabapentin, with either little to no effect or had unacceptable side effects. My siblings swear by it, but I felt nothing.

I haven't researched the charges made in the NYT article, and I've never heard claims that it has no effect on neuropathy pain. I wonder what qualifies the reporter to make the judgment calls made in the article. Obviously (so it seems to me) they don't have nerve pain that is intractable, or they don't have pain that's been brought under control by on or off label medications.

The bone they're picking appears to me to be that most doctors prescribe it in ignorance or indiscriminately, as they have historically done with opioids. I've read and heard many people say that it is an effective medication, enough so that I don't swallow everything the naysayers say or print. I'd like to know what people who are credible witnesses and who can cite credible tests would have to say.

It's hard to dismiss the testimonies of the many people whom it helps. Even though it didn't work for me, (and I don't remember what the side effects were that kept me from continuing to take it) it's certainly helped a lot of people. Is it possible that we're going to see a big political gaba scare that will put prescriptions at risk as happened with opioids? It's criminal to target those of us who have a history of taking the opioids and Gabapentin/Neurontin responsibly that our doctors promised would treat our pain. I'm disturbed that my PCP who had readily prescribed an opioid, specifically for pain, is now trying to get me to believe that it isn't intended to treat pain. Do I really look that dumb or gullible. The whole mess has me taking what my doctors are telling me with a gallon of salt.

Jim

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@jimhd

@steeldove and others

I tried every medication remotely close to effective in treating neuropathy pain, including Gabapentin, with either little to no effect or had unacceptable side effects. My siblings swear by it, but I felt nothing.

I haven't researched the charges made in the NYT article, and I've never heard claims that it has no effect on neuropathy pain. I wonder what qualifies the reporter to make the judgment calls made in the article. Obviously (so it seems to me) they don't have nerve pain that is intractable, or they don't have pain that's been brought under control by on or off label medications.

The bone they're picking appears to me to be that most doctors prescribe it in ignorance or indiscriminately, as they have historically done with opioids. I've read and heard many people say that it is an effective medication, enough so that I don't swallow everything the naysayers say or print. I'd like to know what people who are credible witnesses and who can cite credible tests would have to say.

It's hard to dismiss the testimonies of the many people whom it helps. Even though it didn't work for me, (and I don't remember what the side effects were that kept me from continuing to take it) it's certainly helped a lot of people. Is it possible that we're going to see a big political gaba scare that will put prescriptions at risk as happened with opioids? It's criminal to target those of us who have a history of taking the opioids and Gabapentin/Neurontin responsibly that our doctors promised would treat our pain. I'm disturbed that my PCP who had readily prescribed an opioid, specifically for pain, is now trying to get me to believe that it isn't intended to treat pain. Do I really look that dumb or gullible. The whole mess has me taking what my doctors are telling me with a gallon of salt.

Jim

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Jim – your post reminded me of another thing that happened when I was on the anti-depressants!

I had been put on a higher than recommended dosage because I had come very close to ending my life on the highest recommended dosage. I was hospitalized during this period of time (voluntarily) – where I received EXCELLENT care. But I remember going to one of the nurses at one point saying "I feel like I want to quit smoking, and I think it's the anti-depressants that are causing that." I was told that I should NOT quit smoking because doing so would place additional stress on me and risk my recovery from clinical depression. So – although I no longer felt a desire to smoke – I kept smoking.

Fast forward many years: It was discovered that at least one type of anti-depressant can be used to help people quit smoking. It comes with all kinds of dire warnings – including suicidal thoughts – but it works to help smokers quit, and is prescribed for this purpose.

Drugs sometimes have impacts they were not designed or prescribed for. A good example: An anti-depressant that makes some people suicidal, cures some of clinical depression, and makes others want to quit smoking. My conclusion: None of us should layer our own personal experience over everyone else. (That is pretty much a life truth, isn't it?)

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@steeldove

@rwinney Rachel, if driving is important to you and you can afford the best, take a look at the digital hand controls at http://www.kempf-usa.com It's really pricey, but it helps me to feel in control of my disease. I drive to the swimming pool three days a week, I drive to physical therapy and other medical appointments. Twice I drove it to Minnesota for appointments at Mayo. The inside ring on the steering wheel of my little Prius C is my gas, and the knob on the right is my brake. I can press a small button the dashboard, and the system immediately converts to the usual gas and brake pedals.

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Thanks for the picture as that really helps. This is an terrific concept in practice.

Liked by Leonard, rwinney

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@jimhd

@steeldove and others

I tried every medication remotely close to effective in treating neuropathy pain, including Gabapentin, with either little to no effect or had unacceptable side effects. My siblings swear by it, but I felt nothing.

I haven't researched the charges made in the NYT article, and I've never heard claims that it has no effect on neuropathy pain. I wonder what qualifies the reporter to make the judgment calls made in the article. Obviously (so it seems to me) they don't have nerve pain that is intractable, or they don't have pain that's been brought under control by on or off label medications.

The bone they're picking appears to me to be that most doctors prescribe it in ignorance or indiscriminately, as they have historically done with opioids. I've read and heard many people say that it is an effective medication, enough so that I don't swallow everything the naysayers say or print. I'd like to know what people who are credible witnesses and who can cite credible tests would have to say.

It's hard to dismiss the testimonies of the many people whom it helps. Even though it didn't work for me, (and I don't remember what the side effects were that kept me from continuing to take it) it's certainly helped a lot of people. Is it possible that we're going to see a big political gaba scare that will put prescriptions at risk as happened with opioids? It's criminal to target those of us who have a history of taking the opioids and Gabapentin/Neurontin responsibly that our doctors promised would treat our pain. I'm disturbed that my PCP who had readily prescribed an opioid, specifically for pain, is now trying to get me to believe that it isn't intended to treat pain. Do I really look that dumb or gullible. The whole mess has me taking what my doctors are telling me with a gallon of salt.

Jim

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@jimhd
Good morning, well it is here,
Same story here Jim. I was on 3600 mg a day before the generic came out and it didn’t help my neuropathy or my seizures. Although I never had any side effects. My brother says it helps him and I know someone with fibromyalgia who says it helps her, go figure.
Jake

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@steeldove

@rwinney Rachel, if driving is important to you and you can afford the best, take a look at the digital hand controls at http://www.kempf-usa.com It's really pricey, but it helps me to feel in control of my disease. I drive to the swimming pool three days a week, I drive to physical therapy and other medical appointments. Twice I drove it to Minnesota for appointments at Mayo. The inside ring on the steering wheel of my little Prius C is my gas, and the knob on the right is my brake. I can press a small button the dashboard, and the system immediately converts to the usual gas and brake pedals.

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Hi there and thank you for your reply and suggestion. Due to neuropathy in my head, neck, shoulders, arms and hands…I can't handle much from top to bottom. But, I will never rule anything out and this is good stuff!

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@rwinney

You are correct in your analogy of interviewing. My Neuro is a brilliant man but lacks bedside manner and empathy, unless I'm crying. I have felt trapped with him and because he is highly acclaimed, Im afraid to search for another who may not know as much or be as connected in the field as he. I go back for a follow up Wed after a slew of new blood tests which he tried to reply (via portal) by referring me to a Gastro Dr (for new findings) with not so much as even addressing the chief reason he did the blood work up in the first place…my heightened pain and failing body. This is what I mean. UGH! Because I know my stuff and generally come in prepared, he appears to be put off. I am polite in my presentation except when I get beyond frustrated or scared. That may result in tears or mild sass. Anyway, thanks for the advice. We all continue to help each other through experience. Unfortunately, I do not know specifically the nerves along the top of a foot but do know that mine burn and are painful from any form of flexing or pressure such as snug shoes, walking, standing, driving etc… which is why I cant drive, stand long or walk much. For me, due to Small Fiber Poly Neuropathy.

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Follow up:

Saw my Neuro today and he was his usual dismissive, arrogant, challenging self. He did come around, after my persistence of wanting to rule out more surrounding SFN, and referred me to another neurologist for further review and EMG/nerve conduction study. I'm not 100% sold on him doing this because he's nit qualified to help me in these areas any longer or he chooses to rid of me. Win, win either way. I'll hang in there with him for now with migraine treatments which are cut and dry but, not sure I will ever care to work with him again regarding SFN.

@qball2019 – thanks so much for giving me a nudge in the right direction. It was what I needed to hear at the right time as my medical relationship with this Dr has caused me undo stress. It's like sticking around in a bad marriage for the kids. My SFN, aka "the kids" , made me feel trapped to not cut my nise off to spite my face. I deserve better. So, I guess it was meant to be.

He is graciously helping to expedite the referral for me and we shook hands upon departure. Fair.

I suppose his ego and arrogance in hyping himself up made me believe he was the only one to help me and that's not true. Lesson learned. Boy, do I keep learning.

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@rwinney

Follow up:

Saw my Neuro today and he was his usual dismissive, arrogant, challenging self. He did come around, after my persistence of wanting to rule out more surrounding SFN, and referred me to another neurologist for further review and EMG/nerve conduction study. I'm not 100% sold on him doing this because he's nit qualified to help me in these areas any longer or he chooses to rid of me. Win, win either way. I'll hang in there with him for now with migraine treatments which are cut and dry but, not sure I will ever care to work with him again regarding SFN.

@qball2019 – thanks so much for giving me a nudge in the right direction. It was what I needed to hear at the right time as my medical relationship with this Dr has caused me undo stress. It's like sticking around in a bad marriage for the kids. My SFN, aka "the kids" , made me feel trapped to not cut my nise off to spite my face. I deserve better. So, I guess it was meant to be.

He is graciously helping to expedite the referral for me and we shook hands upon departure. Fair.

I suppose his ego and arrogance in hyping himself up made me believe he was the only one to help me and that's not true. Lesson learned. Boy, do I keep learning.

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PS…to make myself feel better I left a couple of poor reviews at various sites about my experience with him over the past year. 😂

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@rwinney

Follow up:

Saw my Neuro today and he was his usual dismissive, arrogant, challenging self. He did come around, after my persistence of wanting to rule out more surrounding SFN, and referred me to another neurologist for further review and EMG/nerve conduction study. I'm not 100% sold on him doing this because he's nit qualified to help me in these areas any longer or he chooses to rid of me. Win, win either way. I'll hang in there with him for now with migraine treatments which are cut and dry but, not sure I will ever care to work with him again regarding SFN.

@qball2019 – thanks so much for giving me a nudge in the right direction. It was what I needed to hear at the right time as my medical relationship with this Dr has caused me undo stress. It's like sticking around in a bad marriage for the kids. My SFN, aka "the kids" , made me feel trapped to not cut my nise off to spite my face. I deserve better. So, I guess it was meant to be.

He is graciously helping to expedite the referral for me and we shook hands upon departure. Fair.

I suppose his ego and arrogance in hyping himself up made me believe he was the only one to help me and that's not true. Lesson learned. Boy, do I keep learning.

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@rwinney

I'm so sorry to hear that your Dr. treated you so poorly. Maybe him referring you to a different one will be a blessing. Now get yourself ready for your appt. with the new one. Make yourself a list of what you want to mention. Include your frustration with this last guy and how he made you feel. Pour it all like we were talking about previously. Make sure after you put all your cards on the table that ask him/her if they are willing to think out of the box a little bit.Then ask if they are willing to work with you. That way they already know what you expect before moving forward.

Best of luck to you! Keep us posted!!

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@qball2019

@rwinney

I'm so sorry to hear that your Dr. treated you so poorly. Maybe him referring you to a different one will be a blessing. Now get yourself ready for your appt. with the new one. Make yourself a list of what you want to mention. Include your frustration with this last guy and how he made you feel. Pour it all like we were talking about previously. Make sure after you put all your cards on the table that ask him/her if they are willing to think out of the box a little bit.Then ask if they are willing to work with you. That way they already know what you expect before moving forward.

Best of luck to you! Keep us posted!!

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Thank you.

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Hello everyone . I was in a minor accident in 2011. My Ulnar Nerve got compressed at the elbow and required surgery to release. The surgery took care of the numbness below the elbow but I have been left with extreme neuropathy pain above the elbow. The Drs play dumb to what’s happening. Several MRI’s, reveling disc bulging with minor central protruding effects they say isn’t bad enough for surgery . The pain is so severe I disagree. Meanwhile, I slowly have lost a lot of use in my left arm. Now my balance is gone. Which C4, C5 controls. Now they say I have Parkinson or Multiple System Atrophy, Supra Nuclear Palsy or Hydrocephalus. My appt with Mayo is March 24. I don’t know what to think anymore. I am 63

Liked by Leonard

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@birdierobin

Hello everyone . I was in a minor accident in 2011. My Ulnar Nerve got compressed at the elbow and required surgery to release. The surgery took care of the numbness below the elbow but I have been left with extreme neuropathy pain above the elbow. The Drs play dumb to what’s happening. Several MRI’s, reveling disc bulging with minor central protruding effects they say isn’t bad enough for surgery . The pain is so severe I disagree. Meanwhile, I slowly have lost a lot of use in my left arm. Now my balance is gone. Which C4, C5 controls. Now they say I have Parkinson or Multiple System Atrophy, Supra Nuclear Palsy or Hydrocephalus. My appt with Mayo is March 24. I don’t know what to think anymore. I am 63

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Hi, @birdierobin . I think that talking with the neurologist could be the right thing to do. Have you looked online to research your symptoms? Doing the research could give you an idea of what questions you should ask the neurologist.

Jim

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@birdierobin

Hello everyone . I was in a minor accident in 2011. My Ulnar Nerve got compressed at the elbow and required surgery to release. The surgery took care of the numbness below the elbow but I have been left with extreme neuropathy pain above the elbow. The Drs play dumb to what’s happening. Several MRI’s, reveling disc bulging with minor central protruding effects they say isn’t bad enough for surgery . The pain is so severe I disagree. Meanwhile, I slowly have lost a lot of use in my left arm. Now my balance is gone. Which C4, C5 controls. Now they say I have Parkinson or Multiple System Atrophy, Supra Nuclear Palsy or Hydrocephalus. My appt with Mayo is March 24. I don’t know what to think anymore. I am 63

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Hello- One can't blame you for not knowing what to think anymore. What I think is just what @jimhd said…do as much research as you possibly can (or enlist the help of soneone), go to Mayo Clinic and give them "the what for"!!!

If you look at any possible diagnosis through Mayo's site, they generally provide a good list of questions to prepare before your visit and offer questions to expect from the Drs.

Wishing you all the best at your appointment in March. Have a peaceful evening.
Rachel

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Hello @swiss, It's been awhile since you have posted and I wanted to check to see how your search is going. You mentioned traveling to Budapest (Hungary) Center for Plastic Surgery for stem cell treatment for neuropathy. Did the treatment help you?

Liked by Leonard

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@catro

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

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@catro
I'm sorry that I didn't see your message sooner. Have things improved over the past couple of months?

I have similar symptoms, Catro. Similar in that as soon as I lie down or lean back in the recliner with my feet on an ottoman, they start in on burning pain. My daytime pain level is very unpredictable. My lowest pain is at 2, but it will go up to 8 fairly quickly. My feet and ankles hurt when I'm standing still, when I'm driving, and when I'm walking.

The pain is sometimes lessened by wearing loose socks. Other times I have to be barefoot because the socks (and anything else) cause pain by contact.

In bed, I have a pillow to keep between my legs so they don't touch each other, and another pillow under my feet. I have a blanket lifter to keep the bedding from touching my feet. I sleep on my side usually, though I have to lie on my back and prop up my head so I don't feel suffocated and have a panic attack. Sometimes I can rest my feet on the feather pillow, but sometimes I have to arrange my feet so only the heels are on the pillow and the rest of my feet hang off it. If that doesn't work I dangle them off the edge of the bed. Wherever they are, I can't let them touch each other. Wherever they make contact, there will be pain.

I use lidocaine cream on the burning areas, to numb the pain long enough to get to sleep, or sitting in my recliner, or driving. It helps, but it's very much temporary.

Are there certain things that start your pain? Can you find a position of comfort, even if it's just for a short time? Can you tolerate shoes? Have you found a certain shoe you can wear?

Each of us in these discussions about neuropathy are always on the lookout for new things to try – things that have helped others may or may not work for you or me.

I have sleep apnea and use a Bipap machine. It improves my sleep health enough that I don't wake up every night because of pain. Sleep's an important contributor to overall health. Before I was diagnosed with sleep apnea I snored a lot and stopped breathing, so I was chronically tired from sleep deprivation. What a change a CPAP machine made in my life. Sleep is good.

What things have helped you? If you could share those things with us, it could help a lot of people. I suppose you've read some of the things people have posted here. I hope that we can offer you some support and ideas.

Jim

Liked by Leonard, Leonard, rwinney

REPLY
@jimhd

@catro
I'm sorry that I didn't see your message sooner. Have things improved over the past couple of months?

I have similar symptoms, Catro. Similar in that as soon as I lie down or lean back in the recliner with my feet on an ottoman, they start in on burning pain. My daytime pain level is very unpredictable. My lowest pain is at 2, but it will go up to 8 fairly quickly. My feet and ankles hurt when I'm standing still, when I'm driving, and when I'm walking.

The pain is sometimes lessened by wearing loose socks. Other times I have to be barefoot because the socks (and anything else) cause pain by contact.

In bed, I have a pillow to keep between my legs so they don't touch each other, and another pillow under my feet. I have a blanket lifter to keep the bedding from touching my feet. I sleep on my side usually, though I have to lie on my back and prop up my head so I don't feel suffocated and have a panic attack. Sometimes I can rest my feet on the feather pillow, but sometimes I have to arrange my feet so only the heels are on the pillow and the rest of my feet hang off it. If that doesn't work I dangle them off the edge of the bed. Wherever they are, I can't let them touch each other. Wherever they make contact, there will be pain.

I use lidocaine cream on the burning areas, to numb the pain long enough to get to sleep, or sitting in my recliner, or driving. It helps, but it's very much temporary.

Are there certain things that start your pain? Can you find a position of comfort, even if it's just for a short time? Can you tolerate shoes? Have you found a certain shoe you can wear?

Each of us in these discussions about neuropathy are always on the lookout for new things to try – things that have helped others may or may not work for you or me.

I have sleep apnea and use a Bipap machine. It improves my sleep health enough that I don't wake up every night because of pain. Sleep's an important contributor to overall health. Before I was diagnosed with sleep apnea I snored a lot and stopped breathing, so I was chronically tired from sleep deprivation. What a change a CPAP machine made in my life. Sleep is good.

What things have helped you? If you could share those things with us, it could help a lot of people. I suppose you've read some of the things people have posted here. I hope that we can offer you some support and ideas.

Jim

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My uncle suffers from feet neuropathy too and he has even propped his feet up on the wall I know it sounds crazy but he turns around in the bed and puts his feet up on the wall and that eases the pain off some

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