Living with Neuropathy - Welcome to the group

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

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@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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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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