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?

@helennicola

I was diagnosed with idiopathic SFN after having a negative result from EMG testing in my feet and legs. I had burning, tingling in my feet and hands and take gabapentin and R -Alpha lipoic acid. It has been 16 mo. since the sudden onset and it has gotten somewhat worse and I have increased my dosage 2x but I have only ever had 1 EMG test done. I think that drs. are only able to treat the pain unfortunately so I have never requested further testing. Whether or not this is smart I don’t know. My greatest hope is that it does not progress too far and that the drug co.’s come up with something better than Gabapentin in the near future. I wish you well.

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@helennicola, Good afternoon, thanks for responding today. I will cut right to the chase. The tingling in hands and feet may be one thing. The fact that you have burning and possibly pain is another story. May I ask, when do you take the gabapentin? Before bedtime? Throughout the day? What is your current dosage? Do you go for myofascial release therapy (MFR)? There is a discussion here to outline the potential benefit of this treatment.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain
The one test that you might explore is the skin biopsy. This is a non-discomfort two-minute test that extracts a small amount of tissue from your leg, for example. The specimen is sent to a special lab that will measure the percentage of living small fiber neuropathy cells in your sample.

I sure would like to think that the medical community is close to a discovery of some way to get our nerves to come alive and be free of symptoms. And someday that might happen. In the meantime, I would like to do what I can to be as pain and irritation-free as possible. Unfortunately, at this point, there is no cure from neuropathy….just some relief and lifestyle adjustments that can help with the quality of life issues. We can be right here to help you discover what is possible. Be healthy and pain-free today. Chris

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@lynnaustin

I had an emg done in February of this year . At that time I just had pain and tingling in feet. Since May my hands started to be sensitive to touch and achy. Soon after I started experiencing stinging in my forearms . I’m on Gabapentin for pain and recently started Cymbalta for anxiety. My test in February was done by a DO. I went to a neurologist in June and I’ve had many many tests! I’m scheduled for Emgs of my lower body to compare with my first one in February to see if it’s progressed and a first emg of my hands and arms. So far it seems like it’s idiopathic. I’m not sure if he’s going to send me for a spinal tap. He mentioned it but not recently. The results of my emg stated large fiber sensory neuropathy, small fiber could not be assessed with technique.
Too much info?😊 thanks for replying .

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@lynnaustin I'm not sure if this is helpful but it may give you a better understanding on how neurologists diagose the different neuropathies. This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

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@lynnaustin

I had an emg done in February of this year . At that time I just had pain and tingling in feet. Since May my hands started to be sensitive to touch and achy. Soon after I started experiencing stinging in my forearms . I’m on Gabapentin for pain and recently started Cymbalta for anxiety. My test in February was done by a DO. I went to a neurologist in June and I’ve had many many tests! I’m scheduled for Emgs of my lower body to compare with my first one in February to see if it’s progressed and a first emg of my hands and arms. So far it seems like it’s idiopathic. I’m not sure if he’s going to send me for a spinal tap. He mentioned it but not recently. The results of my emg stated large fiber sensory neuropathy, small fiber could not be assessed with technique.
Too much info?😊 thanks for replying .

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@lynnaustin I understand that small fiber neuropathy does not show up on EMGs. In fact, a normal EMG can be seen as an indication of small fiber neuropathy. Repeating the EMG to compare to one done in February seems like overkill, and you may encounter a problem with insurance paying for it.

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@artscaping

@helennicola, Good afternoon, thanks for responding today. I will cut right to the chase. The tingling in hands and feet may be one thing. The fact that you have burning and possibly pain is another story. May I ask, when do you take the gabapentin? Before bedtime? Throughout the day? What is your current dosage? Do you go for myofascial release therapy (MFR)? There is a discussion here to outline the potential benefit of this treatment.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain
The one test that you might explore is the skin biopsy. This is a non-discomfort two-minute test that extracts a small amount of tissue from your leg, for example. The specimen is sent to a special lab that will measure the percentage of living small fiber neuropathy cells in your sample.

I sure would like to think that the medical community is close to a discovery of some way to get our nerves to come alive and be free of symptoms. And someday that might happen. In the meantime, I would like to do what I can to be as pain and irritation-free as possible. Unfortunately, at this point, there is no cure from neuropathy….just some relief and lifestyle adjustments that can help with the quality of life issues. We can be right here to help you discover what is possible. Be healthy and pain-free today. Chris

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My neurologist said she could do the skin biopsy but the results wouldn’t change anything. I experience the classical signs of idiopathic SFN the most troublesome being the burning/tingling in my feet and hands, I also have the feeling of “walking on cotton balls” which does not affect my balance luckily, dry mouth and eyes, and sometimes the icy water trickling down my leg. I take 300 mg. gaba at night which most often let’s me sleep through the night. I choose not to take gaba during the day although my hand pain has increased and is noticeable early on. I am afraid to increase the dosage unless necessary. I have noticed that I have alot less patience and tend to feel depressed and easily stressed since being in gaba but don’t see a viable better solution.

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Hi @helennickola
I have almost the exact same symptoms and diagnosis, idiopathic small fiber neuropathy. Your neurologist is most likely correct about the test not changing anything. In most cases I would agree, but because this is such a maddening condition, I pushed a little to have that test, and some others, so that I coud be sure nothing was missed. The test didn't change anything, other than me being more convinced that the diagnosis is correct.
Regarding meds, I take Lyrica 150 mg 3x daily (actually pregabalin, now that it is generic and much cheaper). I just did an experiment where I went off Lyrica slowly, observed how I felt, then decided to go back on it, because I thought I felt better. It was somewhat subtle, but I do feel better.
Good luck!

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@helennicola

My neurologist said she could do the skin biopsy but the results wouldn’t change anything. I experience the classical signs of idiopathic SFN the most troublesome being the burning/tingling in my feet and hands, I also have the feeling of “walking on cotton balls” which does not affect my balance luckily, dry mouth and eyes, and sometimes the icy water trickling down my leg. I take 300 mg. gaba at night which most often let’s me sleep through the night. I choose not to take gaba during the day although my hand pain has increased and is noticeable early on. I am afraid to increase the dosage unless necessary. I have noticed that I have alot less patience and tend to feel depressed and easily stressed since being in gaba but don’t see a viable better solution.

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@helennicola, Thanks for your reply. I don't know if it makes a difference to know whether it is SFN and idiopathic. Obviously, you do not have diabetes nor have you been through chemotherapy. Those pre-conditions are treated somewhat differently.

Gabapentin at 300 mg in the evening is the very minimum dosage. Are you struggling with that in terms of sleeping or feeling stressed? You mentioned that you have less patience? Do you now practice yoga, meditation, and mindfulness? I just returned from my annual 3-day retreat where I learned the things I need to do based upon where I am with SFN.

And this time there were new opportunities. For example, I belong to a sangha. Tonight the sangha is coming to my house to take a walking meditation along the Mississippi River and then some mindful meditation and homemade treats around the fire-pit. So, as the hostess, I can feel the stress building. My head is dancing with little zappers. I will do some pre-event meditation. Hopefully, that will calm me down. Just being with these ladies for their love and support is amazingly helpful.

And then, if you are comfortable sharing…..do you use medical cannabis? If so, how has that experience been for you? Do you live in a state with access?

Bye for now, I need to get to work on the fruit for the sangria. Let us know how we can help you. Just make sure you are showing self-compassion and putting yourself first. We cannot care for others until we care for ourselves. We need to feel what that is like.
May you feel safe and protected today. Chris

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@jeffrapp

Hi @helennickola
I have almost the exact same symptoms and diagnosis, idiopathic small fiber neuropathy. Your neurologist is most likely correct about the test not changing anything. In most cases I would agree, but because this is such a maddening condition, I pushed a little to have that test, and some others, so that I coud be sure nothing was missed. The test didn't change anything, other than me being more convinced that the diagnosis is correct.
Regarding meds, I take Lyrica 150 mg 3x daily (actually pregabalin, now that it is generic and much cheaper). I just did an experiment where I went off Lyrica slowly, observed how I felt, then decided to go back on it, because I thought I felt better. It was somewhat subtle, but I do feel better.
Good luck!

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Hi Jeff, So you tapered off the Lyrica and then resumed? Did you ever take Gabapentin?Is your pain such that you thought you could do without the Lyrica? Since my pain is at its worst at night I don’t think I could get through the night without gabapentin but have been wondering if I should try switching to Lyrica. Have you experienced any side effects? Have you tried taking it just at night before bed? My dr. originally prescribed gaba to me 3xday but it really affected my co-ordination and memory. Perhaps that would have gotten better in time but since I play golf and bridge I just tried taking it at night only which works ok for now. (fingers crossed) Good luck to you too!

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@helennicola

I was diagnosed with idiopathic SFN after having a negative result from EMG testing in my feet and legs. I had burning, tingling in my feet and hands and take gabapentin and R -Alpha lipoic acid. It has been 16 mo. since the sudden onset and it has gotten somewhat worse and I have increased my dosage 2x but I have only ever had 1 EMG test done. I think that drs. are only able to treat the pain unfortunately so I have never requested further testing. Whether or not this is smart I don’t know. My greatest hope is that it does not progress too far and that the drug co.’s come up with something better than Gabapentin in the near future. I wish you well.

Jump to this post

Hello! Im sorry tp hear of ypur pain. Skin punch biopsy is a simple and factual determination for SFN. Tests for underlying causes include genetic testing, multiple blood draws and spinal tap. I have full body SFN caused by B12 deficiency. Outside of Gabepentin, Lyrica is one to try. I have benefited from the controlled release version of it. I also take Cymbalta for anxiety due to the complexity of the disease and receive lidocaine infusion therapy. A multidisciplinary approach is typically used for SFN. I wish you well and hope you continue to communicate with your neurologist and find what may be able to help you.

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@rwinney

Hello! Im sorry tp hear of ypur pain. Skin punch biopsy is a simple and factual determination for SFN. Tests for underlying causes include genetic testing, multiple blood draws and spinal tap. I have full body SFN caused by B12 deficiency. Outside of Gabepentin, Lyrica is one to try. I have benefited from the controlled release version of it. I also take Cymbalta for anxiety due to the complexity of the disease and receive lidocaine infusion therapy. A multidisciplinary approach is typically used for SFN. I wish you well and hope you continue to communicate with your neurologist and find what may be able to help you.

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Just wanted to be clear that the Lyrica CR (controlled release) is only once a day and does a great job with my pins and needles, zaps etc…

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@jeffrapp

Hi @helennickola
I have almost the exact same symptoms and diagnosis, idiopathic small fiber neuropathy. Your neurologist is most likely correct about the test not changing anything. In most cases I would agree, but because this is such a maddening condition, I pushed a little to have that test, and some others, so that I coud be sure nothing was missed. The test didn't change anything, other than me being more convinced that the diagnosis is correct.
Regarding meds, I take Lyrica 150 mg 3x daily (actually pregabalin, now that it is generic and much cheaper). I just did an experiment where I went off Lyrica slowly, observed how I felt, then decided to go back on it, because I thought I felt better. It was somewhat subtle, but I do feel better.
Good luck!

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How high can you safely go in daily amount of Lyrica?

Liked by Leonard

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@rwinney

Just wanted to be clear that the Lyrica CR (controlled release) is only once a day and does a great job with my pins and needles, zaps etc…

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Hi @rwinney. Just out of curiosity, does your insurance cover LyricaCR? Mine doesn't. It's very expensive.

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@artscaping

@helennicola, Thanks for your reply. I don't know if it makes a difference to know whether it is SFN and idiopathic. Obviously, you do not have diabetes nor have you been through chemotherapy. Those pre-conditions are treated somewhat differently.

Gabapentin at 300 mg in the evening is the very minimum dosage. Are you struggling with that in terms of sleeping or feeling stressed? You mentioned that you have less patience? Do you now practice yoga, meditation, and mindfulness? I just returned from my annual 3-day retreat where I learned the things I need to do based upon where I am with SFN.

And this time there were new opportunities. For example, I belong to a sangha. Tonight the sangha is coming to my house to take a walking meditation along the Mississippi River and then some mindful meditation and homemade treats around the fire-pit. So, as the hostess, I can feel the stress building. My head is dancing with little zappers. I will do some pre-event meditation. Hopefully, that will calm me down. Just being with these ladies for their love and support is amazingly helpful.

And then, if you are comfortable sharing…..do you use medical cannabis? If so, how has that experience been for you? Do you live in a state with access?

Bye for now, I need to get to work on the fruit for the sangria. Let us know how we can help you. Just make sure you are showing self-compassion and putting yourself first. We cannot care for others until we care for ourselves. We need to feel what that is like.
May you feel safe and protected today. Chris

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Thank you Chris for your thoughts and good wishes. I try meditating (my version) but not too good at it; too many stressful things going on right now, husband having (2)much- needed spinal surgeries coming up, my dog’s heart murmur very bad and me possibly needing another hip replacement. I have not tried med. can. it is not legal in my state but would if I could! I can’t even drink any alcohol because it does have a very negative effect on my pain at night. I do exercise which helps and have taken up painting again so that helps. Have fun with your friends, “laughter is the best medicine” so they say!

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@jimbotch

How high can you safely go in daily amount of Lyrica?

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The usual dose of Lyrica for peripheral neuropathy is 50-100 mg 3x daily. Maximum dose is 600 mg per day, but that doesn't mean it's safe for you, or any the random person.

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@artscaping

@lynnaustin Wow…that was fast. Thank you for responding. I am tagging @johnbishop since he also replied to your post. John has been my mentor since I joined Connect a couple of years ago. His forte is research. So ask away and he will delight you with the places he can find for pertinent information.

A couple of notes in response: you have gone halfway with the large fiber sensory neuropathy based on your EMG. As your "neuropathy" has moved to your hands and forearms, I might suggest that you request a skin biopsy to detect small fiber neuropathy (SFN). That test is done in under a minute without discomfort and then sent to a special lab that measures the percentage of nerve activity you have in the sample. These small fiber nerves seem to create pain because when they are unable to do their job, they send back pain signals. @johnbishop can give you a lead to understanding all of the neuropathy situations.

I also see that John has given you the link to MFR therapy. That amazing gentle touching therapy has been my salvation, I go every week. The relief, though not permanent, has been a game-changer for me. Your MFR therapist will also teach you some at-home exercises or treatments that can be helpful when done regularly.

Gabapentin. if you tolerate it well, is my sleep medication. it works on the brain to mask the pain by calming the nerves that create it. My dosage has increased to 1200 mg 1 hr before bedtime. It gets my hands ready for some uninterrupted sleep. Do you take your gabapentin in the evening? If I may ask, what dosage are you using?

Then in the morning I also take duloxetine (Cymbalta) 60 mg. I have worked up to that and if it does nothing more than reduce my anxiety, I am happy. As you probably know, pain can lead to anxiety which can lead to more pain and then you are in a loop.

I am a fan of topicals for quick relief and always have them in my purse. Have you found any balms or lotions or compounds that help you during the day?

Let's start with these ideas. Oh and throw in a hot as possible shower in the morning. Please ask any questions you wish. May you be free of suffering today. Chris

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I take 300mg of Gabapentin and just started 60 mg of Cymbalta at bedtime . I haven’t found any topicals for stinging.
Actually reading many of the posts are scaring me . Does PN always progress ? Hoping mine would remain
stable . Thanks for your help.

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@helennicola

Hi Jeff, So you tapered off the Lyrica and then resumed? Did you ever take Gabapentin?Is your pain such that you thought you could do without the Lyrica? Since my pain is at its worst at night I don’t think I could get through the night without gabapentin but have been wondering if I should try switching to Lyrica. Have you experienced any side effects? Have you tried taking it just at night before bed? My dr. originally prescribed gaba to me 3xday but it really affected my co-ordination and memory. Perhaps that would have gotten better in time but since I play golf and bridge I just tried taking it at night only which works ok for now. (fingers crossed) Good luck to you too!

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I used to take gabapentin in fairly large amounts. I never really experienced any side effects, but then I have always been an expensive date. I also never knew if it was doing anything, as my symptoms progressed while I was on it. Of course, they may have progressed more it I weren't on it.
I switched to Lyrica just to try it. There doesn't seem to be any difference.
I find that my feet feel much better in warm weather, which it is now. There are so many variables as to how I feel, including emotional ones. It makes it very hard to decide what is working or not, as you probably know by now.
I don't get the sense that that either of them work right away. In my case, if they work at all, it seems to be a cumulative effect over many days. You may have a different result.
Keep experimenting.

Liked by rwinney, mlross4508

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