I am 71 and have had PN since I was in my late 30s. It is familial. It has been progressive over the years. Years ago I told it “I am going to keep going, you can come along, if you want to.” I have learned to live with it.
Recently my feet have started to swell up at night, making it very difficult to sleep. I have started soaking my feet in cold water with Epson salts after my short, tepid shower. That has helped.
My feet start burning when I am reclining at night watching television and then get worse when I go to bed. Using a small ice pack on the bottoms of my feet before bed gives great relief!
I tried Alpha-lipoic-acid ALA for several weeks in the past and at the tike I said it didn't help me at all. I have since changed my mind. My PCP said that she takes it herself for the other benefits such as lowering blood sugar and other reasons that I don't remember, so I kept taking 600mg twice a day as she said it couldn't hurt me. 4 weeks ago I caught COVID verified by an ER test. The COVID caused the PN in my feet to really blossom, the pain was almost unbearable. According to my PC{P COVID goes after weakness in the body and it sure found mine in my PN. I used Bio-Freeze Overnight and that helped a lot. Since the COVID abated my PN pain has significantly reduced and I am pointing at my continued use of ALA for the reduction as nothing else except for COVID coming and going has changed.
I've experienced PN in both LE for over 20 years and have been prescribed Gabapentin to control chonic headaches/migraines over a lot of that time. I am currently on 1800mg/daily with several other prescriptions for that, but there has been no noticeable effect on the PN. I have also tried ALA but again, with no noticeable effect. During the interim of years, and more recently, I have tried physical therapy, acupuncture, and now trying compression stockings. Due to foot pain, I also need to wear house shoes (Skectchers) on hardwood flooring (throughout the house).
That said, I am still looking for something which may actually provide some relief from the numbness, burning, and loss of muscle & balance.
My feet start burning when I am reclining at night watching television and then get worse when I go to bed. Using a small ice pack on the bottoms of my feet before bed gives great relief!
Interesting how the cold helps our feet at night. After my quick, tepid shower I soak my feet in cold water for 15 minutes. They turn all kinds of colors, but it makes them really cold and I am able to sleep.
I've experienced PN in both LE for over 20 years and have been prescribed Gabapentin to control chonic headaches/migraines over a lot of that time. I am currently on 1800mg/daily with several other prescriptions for that, but there has been no noticeable effect on the PN. I have also tried ALA but again, with no noticeable effect. During the interim of years, and more recently, I have tried physical therapy, acupuncture, and now trying compression stockings. Due to foot pain, I also need to wear house shoes (Skectchers) on hardwood flooring (throughout the house).
That said, I am still looking for something which may actually provide some relief from the numbness, burning, and loss of muscle & balance.
are one of the other meds Cymbalta? i'm on 1800mg of Gabapentin and 120mg of Cymbalta. it doesn't stop the pain 100% but it makes walking and sleeping more bearable for ME.
Interesting how the cold helps our feet at night. After my quick, tepid shower I soak my feet in cold water for 15 minutes. They turn all kinds of colors, but it makes them really cold and I am able to sleep.
i find this very interesting too. i don't use any blankets nor socks at night. and i keep my room cooler than the rest of the house. it helps a little. a little is better than the alternatives.
are one of the other meds Cymbalta? i'm on 1800mg of Gabapentin and 120mg of Cymbalta. it doesn't stop the pain 100% but it makes walking and sleeping more bearable for ME.
if you don't think your neurologist is helping, then you need to see a different one. i say this cautiously. because i don't know what insurance you have. it's important to find one who will help you. i got my Cymbalta from my PCP before i started Gabapentin. i use Cymbalta for depression also. so talk to your PCP about it. it doesn't have to be prescribed by the neurologist. please keep me updated, if you don't mind. d
I've experienced PN in both LE for over 20 years and have been prescribed Gabapentin to control chonic headaches/migraines over a lot of that time. I am currently on 1800mg/daily with several other prescriptions for that, but there has been no noticeable effect on the PN. I have also tried ALA but again, with no noticeable effect. During the interim of years, and more recently, I have tried physical therapy, acupuncture, and now trying compression stockings. Due to foot pain, I also need to wear house shoes (Skectchers) on hardwood flooring (throughout the house).
That said, I am still looking for something which may actually provide some relief from the numbness, burning, and loss of muscle & balance.
Thanks for the info, John. I've read quite a bit on SFSN, and my symptoms are identical to everything I read on the disorder. I have no difficulty walking or moving around. Besides the gabapentin, I also take a number of supplements, including B12. That really helped the worst of the pins-and-needles and electric shock-like symptoms to dissipate when I had a flare-up a couple years ago. The only other issue I have is painful, sometimes disabling cramps in my feet and legs, mostly at night while at rest. But I think that might be a separate disorder from the neuropathy. I've heard from doctors that a lot of us "older folks" (I'm 67) have the problem, especially in the evening. It's pathetic that no one in the medical community can offer any help to the millions of people who have these problems. For me, the cramps are worse than the neuropathy. I've tried OTC creams and lotions, taking Hyland's pills, stretching exercises in the evening, massage, and even drinking pickle juice. Any other thoughts on how to combat the nighttime cramps?
I also have cramp fasciculation syndrome, diagnosed by Mayo Clinic. I used quinine sulfate 324 mg caps prn for cramping until I discovered mountain bikers used a teaspoon of yellow mustard. Don’t know what ingredient does the trick, but it works for me and other family members with CFS.
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My feet start burning when I am reclining at night watching television and then get worse when I go to bed. Using a small ice pack on the bottoms of my feet before bed gives great relief!
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Helpful -
Hug
4 ReactionsI tried Alpha-lipoic-acid ALA for several weeks in the past and at the tike I said it didn't help me at all. I have since changed my mind. My PCP said that she takes it herself for the other benefits such as lowering blood sugar and other reasons that I don't remember, so I kept taking 600mg twice a day as she said it couldn't hurt me. 4 weeks ago I caught COVID verified by an ER test. The COVID caused the PN in my feet to really blossom, the pain was almost unbearable. According to my PC{P COVID goes after weakness in the body and it sure found mine in my PN. I used Bio-Freeze Overnight and that helped a lot. Since the COVID abated my PN pain has significantly reduced and I am pointing at my continued use of ALA for the reduction as nothing else except for COVID coming and going has changed.
-
Like -
Helpful -
Hug
4 ReactionsI've experienced PN in both LE for over 20 years and have been prescribed Gabapentin to control chonic headaches/migraines over a lot of that time. I am currently on 1800mg/daily with several other prescriptions for that, but there has been no noticeable effect on the PN. I have also tried ALA but again, with no noticeable effect. During the interim of years, and more recently, I have tried physical therapy, acupuncture, and now trying compression stockings. Due to foot pain, I also need to wear house shoes (Skectchers) on hardwood flooring (throughout the house).
That said, I am still looking for something which may actually provide some relief from the numbness, burning, and loss of muscle & balance.
-
Like -
Helpful -
Hug
3 ReactionsInteresting how the cold helps our feet at night. After my quick, tepid shower I soak my feet in cold water for 15 minutes. They turn all kinds of colors, but it makes them really cold and I am able to sleep.
-
Like -
Helpful -
Hug
5 Reactionsare one of the other meds Cymbalta? i'm on 1800mg of Gabapentin and 120mg of Cymbalta. it doesn't stop the pain 100% but it makes walking and sleeping more bearable for ME.
i find this very interesting too. i don't use any blankets nor socks at night. and i keep my room cooler than the rest of the house. it helps a little. a little is better than the alternatives.
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2 ReactionsNo. Although the Gabapentin is for headache control, my neurologist just said to keep taking it and it should reduce the PN. Not much help there.
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3 Reactionsif you don't think your neurologist is helping, then you need to see a different one. i say this cautiously. because i don't know what insurance you have. it's important to find one who will help you. i got my Cymbalta from my PCP before i started Gabapentin. i use Cymbalta for depression also. so talk to your PCP about it. it doesn't have to be prescribed by the neurologist. please keep me updated, if you don't mind. d
You may want to try low dose Naltrexone. It has reduced my pain and burning
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1 ReactionI also have cramp fasciculation syndrome, diagnosed by Mayo Clinic. I used quinine sulfate 324 mg caps prn for cramping until I discovered mountain bikers used a teaspoon of yellow mustard. Don’t know what ingredient does the trick, but it works for me and other family members with CFS.