I have idiopathic small fiber neuropathy. I am currently taking gabapentin and amitriptyline but am not getting much relief from the burning pain on my back and arms. I would love to hear from anyone who has this and is being treated with different medications b
@user_ch98d0b5c I have patchy Non-Length Dependent Small Fiber Neuropathy (NLD SFN). No confirmed underlying cause, though I've had an Inflammatory Bowel Disease for 35 years, so I think that has to be the best bet. I've done all of the bloodwork, a Genetic test, an EMG (negative) and a skin biopsy (which confirmed DX). It is contained in my feet since onset about 2.5 years ago. Symptoms include burning sensations that are getting worse, tingling and numbness. Currently maxed out on Gabapentin at 3600mg daily but I don't think it helps much. I will say my stress level has gone way up the last few months and I have seen a direct correlation between higher stress and more burning in my feet. I think I will have to look at Gabapentin alternatives or adding something on top of it in the near future. I hope you are coping with your symptoms. That seems to be all there is with this-symptom management.
I have also had problems with gabapentine and got off of a 2,000 mg dosage. I fully agree with stress as an issue. The stress can be psychological, physical, and even environmental with weather changes. For me (and it is all different for all of us) I find a little relief from a cream that my neurologist has compounded at a pharmacy. 5% lidocaine, 5% ketamine, 5% gabapentine. My concern with this compound is that my body will adjust to it and it will no longer remain effective. I put up with alot and use it only as a last resort. Keeping feet and hands warm is a must. I've tried all the meds but continue to try different B vitamins and combinations of essential oils mixed with THC or CBD. worked with ACL and various other herbs or amino acids. Keep trying, don't give up. AND keep notes on everything, because you can get confused on what you have or have not tried and for how long.
Diagnosed w/Idiopathic Perepheral Neuropathy (small fiber), Dysequilibrium & Impaired functional mobility, balance, gait, & endurance.
Anyone else having problems finding a knowledgeable doctor that will listen & believe your symptoms are real?
I have Perepheral Neuropathy in both feet. I found a chiropractor that does MLS laser treatments. I have gotten slightly better. Before these treatments every pair of shoes hurt and I had a hard time going barefoot. My shoes are now more comfortable and going barefoot is not a problem. Also my lower back would hurt if I stood too much. That is almost completely gone. I know this won’t help everyone. I thought it was worth a try.
I have also had problems with gabapentine and got off of a 2,000 mg dosage. I fully agree with stress as an issue. The stress can be psychological, physical, and even environmental with weather changes. For me (and it is all different for all of us) I find a little relief from a cream that my neurologist has compounded at a pharmacy. 5% lidocaine, 5% ketamine, 5% gabapentine. My concern with this compound is that my body will adjust to it and it will no longer remain effective. I put up with alot and use it only as a last resort. Keeping feet and hands warm is a must. I've tried all the meds but continue to try different B vitamins and combinations of essential oils mixed with THC or CBD. worked with ACL and various other herbs or amino acids. Keep trying, don't give up. AND keep notes on everything, because you can get confused on what you have or have not tried and for how long.
@snagydude I just message my Neuro about the gabapentin not helping me much and I'd love to try a compounded topical. Does yours dry quickly? That is my main concern as my my pain is worst at work and I worry I would only be able to use the cream at night before bed. I share your concern about your body adapting to the drugs. Each time I've upped my dose of gabapentin it seems to work for about 6 weeks and then I am back to little to no relief. It is all very frustrating as I am walking a lot at work and that won't/can't change.
@snagydude I just message my Neuro about the gabapentin not helping me much and I'd love to try a compounded topical. Does yours dry quickly? That is my main concern as my my pain is worst at work and I worry I would only be able to use the cream at night before bed. I share your concern about your body adapting to the drugs. Each time I've upped my dose of gabapentin it seems to work for about 6 weeks and then I am back to little to no relief. It is all very frustrating as I am walking a lot at work and that won't/can't change.
Usually takes a couple of minutes. If you are concerned with dry time, a pharmacist can probably compound something with an alcohol base. It will dry quickly, but the downside is that it may not be absorbed as fully. If you are concerned with dry time, I'd opt for using a very thin pair of socks...my 2 cents. S
I have idiopathic small fiber neuropathy. I am currently taking gabapentin and amitriptyline but am not getting much relief from the burning pain on my back and arms. I would love to hear from anyone who has this and is being treated with different medications b
My neuropathy pain ( burning without relief) was finally controlled when my neurologist and I experimented with Tegretol. I take 400 mg twice a day. I still have pain, but it’s muscular and predictable, and can be controlled with Baclofen, and small amounts of Percocet. The burning is gone.
I have also had problems with gabapentine and got off of a 2,000 mg dosage. I fully agree with stress as an issue. The stress can be psychological, physical, and even environmental with weather changes. For me (and it is all different for all of us) I find a little relief from a cream that my neurologist has compounded at a pharmacy. 5% lidocaine, 5% ketamine, 5% gabapentine. My concern with this compound is that my body will adjust to it and it will no longer remain effective. I put up with alot and use it only as a last resort. Keeping feet and hands warm is a must. I've tried all the meds but continue to try different B vitamins and combinations of essential oils mixed with THC or CBD. worked with ACL and various other herbs or amino acids. Keep trying, don't give up. AND keep notes on everything, because you can get confused on what you have or have not tried and for how long.
Agree with using a compounded cream. There are an infinite number of possibilities. A compounding pharmacy can educate you about the various “ pain cream” recipes, and you can share this with your neurologist. I only use it at night, and sparingly, because it’s expensive.
Diagnosed w/Idiopathic Perepheral Neuropathy (small fiber), Dysequilibrium & Impaired functional mobility, balance, gait, & endurance.
Anyone else having problems finding a knowledgeable doctor that will listen & believe your symptoms are real?
I have Progressive Peripheral Neuropathy is what I was diagnosed with and it has made it where I can’t really walk stand and my balance is tremendously off. No I have not met or found a doctor that can help my situation . However I am trying to move more and pray harder and I am doing better 1step at a time one day at a time. I pray this blesses your heart. Have an amazing rest of your week.
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I’m being treated with Lyrica
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1 ReactionI have also had problems with gabapentine and got off of a 2,000 mg dosage. I fully agree with stress as an issue. The stress can be psychological, physical, and even environmental with weather changes. For me (and it is all different for all of us) I find a little relief from a cream that my neurologist has compounded at a pharmacy. 5% lidocaine, 5% ketamine, 5% gabapentine. My concern with this compound is that my body will adjust to it and it will no longer remain effective. I put up with alot and use it only as a last resort. Keeping feet and hands warm is a must. I've tried all the meds but continue to try different B vitamins and combinations of essential oils mixed with THC or CBD. worked with ACL and various other herbs or amino acids. Keep trying, don't give up. AND keep notes on everything, because you can get confused on what you have or have not tried and for how long.
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3 ReactionsI have Perepheral Neuropathy in both feet. I found a chiropractor that does MLS laser treatments. I have gotten slightly better. Before these treatments every pair of shoes hurt and I had a hard time going barefoot. My shoes are now more comfortable and going barefoot is not a problem. Also my lower back would hurt if I stood too much. That is almost completely gone. I know this won’t help everyone. I thought it was worth a try.
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Helpful -
Hug
1 Reaction@snagydude I just message my Neuro about the gabapentin not helping me much and I'd love to try a compounded topical. Does yours dry quickly? That is my main concern as my my pain is worst at work and I worry I would only be able to use the cream at night before bed. I share your concern about your body adapting to the drugs. Each time I've upped my dose of gabapentin it seems to work for about 6 weeks and then I am back to little to no relief. It is all very frustrating as I am walking a lot at work and that won't/can't change.
-
Like -
Helpful -
Hug
1 ReactionUsually takes a couple of minutes. If you are concerned with dry time, a pharmacist can probably compound something with an alcohol base. It will dry quickly, but the downside is that it may not be absorbed as fully. If you are concerned with dry time, I'd opt for using a very thin pair of socks...my 2 cents. S
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Like -
Helpful -
Hug
3 ReactionsMy neuropathy pain ( burning without relief) was finally controlled when my neurologist and I experimented with Tegretol. I take 400 mg twice a day. I still have pain, but it’s muscular and predictable, and can be controlled with Baclofen, and small amounts of Percocet. The burning is gone.
-
Like -
Helpful -
Hug
2 ReactionsAgree with using a compounded cream. There are an infinite number of possibilities. A compounding pharmacy can educate you about the various “ pain cream” recipes, and you can share this with your neurologist. I only use it at night, and sparingly, because it’s expensive.
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2 ReactionsThank you. My neurologist put me on 50 mg of Lyrica but unfortunately it didn’t work for me.
I have neuropathy from a nummular persistent daily headache. It is a constant on top of my head .
I have Progressive Peripheral Neuropathy is what I was diagnosed with and it has made it where I can’t really walk stand and my balance is tremendously off. No I have not met or found a doctor that can help my situation . However I am trying to move more and pray harder and I am doing better 1step at a time one day at a time. I pray this blesses your heart. Have an amazing rest of your week.
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Helpful -
Hug
2 Reactions