I've had Non-diabetic PN for ten years, resulting from a very small cancer in my spinal chord at T11. My balance is shot, because my doctors did not discover it until my B Cell Lymphoma was one and a half years old. It is very small, but it doesn't need to be big to interfere with nerves in the spinal chord. If it had been radiation treated within a couple of months, maybe I wouldn't be in a wheelchair.
I started with just Duloxetine and that didn't help much at all. It's hit and miss with Duloxetine and Gabapentin together. Some nights I go to sleep right away with the meds and other nights, I toss and turn because my feet feel hot and swollen. There isn't pain per se, it's more like my feet are bound and they can't get loose. That's a constant. I think it also depends on whether or not I have exercised much during the day. I wear Birkenstocks most of the time and my feet do not hurt at all when I am wearing them. If I take the Birkenstocks off, the feet feel bound. I wear Hokas for exercise and my feet feel okay in them. I've also tried not taking the meds and that has worked for one night but after that one night, I have to start taking the meds again in order to get relief.
I’ve been on 200 mg for over a year. I had tried lyrica with another doctor and it gave me an “out of body experience” which did not occur with Gabapentin yet they are supposed to be the same medication.
Bonnie - the issue I had was that the gabapentin gave me issues that were more anger issues. Things that would normally not bother me did and it became worse and my wife finally said after about 30 days, this med isn't working well. She contacted the doc and doc said that this can be an issue with some people taking gaba so they had to taper me off.
A surgeon, unrelated to my TKR surgeon, believes my neuropathy of the feet
is most likely a result of my knee replacement. He explained that there are
so many nerves etc…. Involved that it could be a few years before I see any
disappearance of the neuropathy, if at all. I also have a swollen groin lymph node which was found to be fine from an ultrasound but it is swollen and he thinks that should resolve itself within 12 more months. It’s now been two years since my TKR. I have another follow up ultrasound early November to determine if there are any changes.
If I had it to do over again, I’d never have had a knee replacement. It’s changed my active life.
Vince
I have PN from long COVID. EMG shows my nerve damage as minor and thankfully have no real pain just "buzzing" in my lower legs and feet along with "dead big toes". Have given up alcohol and caffeine which has helped. Also have done ARP Wave therapy for 2 months which I think helped - but it is a strong nerve stimulant (amplified TENS) so may not suit those in nerve pain. Taking nerve friendly supplements.
Today I got served a real coffee by accident and within 10 minutes by PN was going for it. High degree of aggravation. Lasted for about 6 hours. For me I think I have proof caffeine is inflammatory and therefore must be avoided.
I started with just Duloxetine and that didn't help much at all. It's hit and miss with Duloxetine and Gabapentin together. Some nights I go to sleep right away with the meds and other nights, I toss and turn because my feet feel hot and swollen. There isn't pain per se, it's more like my feet are bound and they can't get loose. That's a constant. I think it also depends on whether or not I have exercised much during the day. I wear Birkenstocks most of the time and my feet do not hurt at all when I am wearing them. If I take the Birkenstocks off, the feet feel bound. I wear Hokas for exercise and my feet feel okay in them. I've also tried not taking the meds and that has worked for one night but after that one night, I have to start taking the meds again in order to get relief.
Hi poodlemom6 & thanks for the post. I'm newly diagnosed with SFN, and after a whole lotta blood work-ups they've offered absolutely a whole Lotta nothin' as to why I developed this disease. I began experiencing burning about 7 months after an intense foot surgery to repair a torn posterior tibial tendon. Today, my foot is not healing, it's likely I'll need another surgery and I'm not sure what to do about the SFN. GABAPENTIN did nothing for me. I'm on Lyrica (pregabalin) and that's no better. I also take baclafen and oxycodone for pain during the day, and mirtazapine and ropinirole at night. Those 4 help with pain and chronic insomnia. My pain doc has referred me to participate in a one-week study by Abbott for a device that uses neurotransmitters to block pain. I'll try it, but from what I've read the jury's still out. Plus most have to continue taking some type of pain med.
Hi poodlemom6 & thanks for the post. I'm newly diagnosed with SFN, and after a whole lotta blood work-ups they've offered absolutely a whole Lotta nothin' as to why I developed this disease. I began experiencing burning about 7 months after an intense foot surgery to repair a torn posterior tibial tendon. Today, my foot is not healing, it's likely I'll need another surgery and I'm not sure what to do about the SFN. GABAPENTIN did nothing for me. I'm on Lyrica (pregabalin) and that's no better. I also take baclafen and oxycodone for pain during the day, and mirtazapine and ropinirole at night. Those 4 help with pain and chronic insomnia. My pain doc has referred me to participate in a one-week study by Abbott for a device that uses neurotransmitters to block pain. I'll try it, but from what I've read the jury's still out. Plus most have to continue taking some type of pain med.
Hello @cyn17, Welcome to Connect. I'm sorry to hear that they haven't been able to help the foot pain very much and you are thinking you may need another surgery on the foot. Did they actually do any tests to determine you have SFN? Is the foot pain only on the foot you had the surgery on?
Try spreading the gabapentine out over multiple times a day instead of two times of taking it. I found if I take a bunch at a time then it actually causes the nerves to be worse. I am able to spread mine out over 5 times a day. It made a big difference as it keeps the drip steady in my system nicely.
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Sorry to hear about your situation. My problem is small compared to yours.
I started with just Duloxetine and that didn't help much at all. It's hit and miss with Duloxetine and Gabapentin together. Some nights I go to sleep right away with the meds and other nights, I toss and turn because my feet feel hot and swollen. There isn't pain per se, it's more like my feet are bound and they can't get loose. That's a constant. I think it also depends on whether or not I have exercised much during the day. I wear Birkenstocks most of the time and my feet do not hurt at all when I am wearing them. If I take the Birkenstocks off, the feet feel bound. I wear Hokas for exercise and my feet feel okay in them. I've also tried not taking the meds and that has worked for one night but after that one night, I have to start taking the meds again in order to get relief.
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3 ReactionsThank you.
Bonnie - the issue I had was that the gabapentin gave me issues that were more anger issues. Things that would normally not bother me did and it became worse and my wife finally said after about 30 days, this med isn't working well. She contacted the doc and doc said that this can be an issue with some people taking gaba so they had to taper me off.
-
Like -
Helpful -
Hug
1 ReactionA surgeon, unrelated to my TKR surgeon, believes my neuropathy of the feet
is most likely a result of my knee replacement. He explained that there are
so many nerves etc…. Involved that it could be a few years before I see any
disappearance of the neuropathy, if at all. I also have a swollen groin lymph node which was found to be fine from an ultrasound but it is swollen and he thinks that should resolve itself within 12 more months. It’s now been two years since my TKR. I have another follow up ultrasound early November to determine if there are any changes.
If I had it to do over again, I’d never have had a knee replacement. It’s changed my active life.
Vince
I have PN from long COVID. EMG shows my nerve damage as minor and thankfully have no real pain just "buzzing" in my lower legs and feet along with "dead big toes". Have given up alcohol and caffeine which has helped. Also have done ARP Wave therapy for 2 months which I think helped - but it is a strong nerve stimulant (amplified TENS) so may not suit those in nerve pain. Taking nerve friendly supplements.
Today I got served a real coffee by accident and within 10 minutes by PN was going for it. High degree of aggravation. Lasted for about 6 hours. For me I think I have proof caffeine is inflammatory and therefore must be avoided.
Individual specific but Caffeine is a no go!
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Helpful -
Hug
4 ReactionsHi poodlemom6 & thanks for the post. I'm newly diagnosed with SFN, and after a whole lotta blood work-ups they've offered absolutely a whole Lotta nothin' as to why I developed this disease. I began experiencing burning about 7 months after an intense foot surgery to repair a torn posterior tibial tendon. Today, my foot is not healing, it's likely I'll need another surgery and I'm not sure what to do about the SFN. GABAPENTIN did nothing for me. I'm on Lyrica (pregabalin) and that's no better. I also take baclafen and oxycodone for pain during the day, and mirtazapine and ropinirole at night. Those 4 help with pain and chronic insomnia. My pain doc has referred me to participate in a one-week study by Abbott for a device that uses neurotransmitters to block pain. I'll try it, but from what I've read the jury's still out. Plus most have to continue taking some type of pain med.
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4 ReactionsHello @cyn17, Welcome to Connect. I'm sorry to hear that they haven't been able to help the foot pain very much and you are thinking you may need another surgery on the foot. Did they actually do any tests to determine you have SFN? Is the foot pain only on the foot you had the surgery on?
I'm curious. What is your problem?
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1 ReactionMe too. I spread my Gabba out over 4 times daily and is fairly helpful.
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2 Reactions