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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?
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Big thanks, John. I’ve tried many of the supplements on the list with Benfotiamine (one of the B vitamins) being the most effective. It’s a little difficult to follow up on each recommended supplement or I can find myself taking 20-30 pills twice a day and breaking the bank. I’m always looking for combination products that allow me to stop taking 10 or 15 pills a day and take one product instead, especially if it makes everything more affordable. I’ve had success with Nuturna’s Alpha-Lipoic premium liquid formula which includes many of the recommended supplements. I’m still experimenting with recommendations and doing pretty well now.
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2 ReactionsOne more question. When you “no effect” with regards to what.
Thanks.
I didn’t notice anything but I haven’t even given the Lion’s Mane even a week for any effect on neuropathy.
Hi, I’m a small fiber neuropathy person (4 years) that over the last 6 weeks is losing foot use due to burning pain. I take 1800mg gabapentin daily. Will upping my meds help?
Thanks all and I wish folks well.
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1 ReactionI have a consultation for spinal stimulation in mid June. Please let us know how it goes. Thanks.
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1 ReactionHi @tedpellerin, Sorry to hear the neuropathy has gotten worse with the burning pain in the feet. Hopefully other members can answer your question about upping the gabapentin dose above 1800 mg and will it help. My guess is that it may or may not since each of us are different. There are a couple of other discussions you might want to view to see what others have shared on the burning pain.
--- burning soles of feet: https://connect.mayoclinic.org/discussion/burning-soles-of-feet/
--- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
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1 ReactionI’m pat, and I have burning mouth syndrome, which my ENT says is a trap of neuropathy I’m to go on gabapentin once I wean off amitryptalin I’m just using products for dry mouth but doesn’t really take away the burning pain
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1 ReactionHi @patpalme, Welcome to Connect. I know it's probably not much comfort, but I can tell you that you are not alone. There are a few burning mouth syndrome discussions you might find helpful.
--- Burning Mouth Syndrome (BMS): Anyone found any relief?: https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
--- Burning Mouth Syndrome: Anyone had success with compounded mouth rinse:
https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-clonazepam/
How long have you had the burning mouth symptoms?
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2 ReactionsHi Ted,
Gabapentin did nothing for my neuropathy but Lyrica and Benfotiamine have helped a lot. A little more help has come from Primrose Oil and Alpha lipoic Acid but mostly L and B have helped a lot.
Friday someone wrote about a national forum that has studies on the many treatments for Neuropathy. I was a 5 page study covering groups of Studies. t broke down Medicines from Pills, Creams, Docter studies, home remedies. There were no conclusions. I misplaced the name of the Foundation. Any chance anyone their name or study, Thank You.
GBA