I am a non-insulin diabetic with peripheral neuropathy of the feet. I live on Gabapentin, 900mg, 3 times a day. I have done all of the following: massage therapy, acupuncture, deep tissue red light therapy, shock wave therapy, and an abundance of supplements. I have had a ton of blood work to check all levels of vitamins and acids and blah, blah, blah. 3 years in and still, no relief. I am about to undergo Qutenza treatment as my last, desperate chance. It's not a cure, which, at this point, I don't believe there is one, but I'm praying to the Almighty that it will give me some relief. If anyone has a silver bullet, by all means, let me know.
@dwilly1978 I don't have a silver bullet but if I get one I'll send it to you - slowly. What has allowed me, I believe, to reduce my doses of gabapentin is 600mg of R Alpha Lipid Acid, taken before bed on empty stomach. I also take magnesium citrate and vitamin b12 methycobalamin .
I was able to reduce gabapentin from 2400 mg daily (600/mg x 4) to 1200mg daily (600mg at night and 2 x 300mg during day). That was over a 3 month period.
I am trying to reduce further. This reduction helped my brain fogginess and balance on my feet.
I have been struggling with PN since my first scoliosis surgery at age 58. Ian now almost 76. For me, I have only felt pain a handful of times; however, my main complaint has been numbness/tingling.
The neurologists I’ve seen over the years can offer no relief and have absolutely no advice to help. I have spent tons of money on devices and pills advertised for relief of numbness. Of course, none of these “cures”work, and, as a matter of fact, one even made it worse.
I’ve been on Gabapentin many years. Again, massive doses had zero effect on the numbness.
That awful numbness has particularly worsened over the last seven days. It seems to have spread halfway up my calves. Over the last couple of days, even my left hand has periodically been affected. It’s a horrible feeling and very unsettling. Truly, it feels like bugs are crawling inside my limbs. As far as my balance….let’s just say it’s nil, hence the wheelchair.
If anyone out there has ANY suggestions, I’d love to hear them.
Welcome @bododa, Thanks for sharing the different treatments and challenges you have with restless leg syndrome and small fiber neuropathy. Poor sleep is a challenge indeed. I have small fiber peripheral neuropathy and also have obstructive sleep apnea. A CPAP device helps me but it also provides some challenges of it's own finding the right mask that works for me.
Thank you @johnbishop! Yes I had an overnight sleep study about 15 yrs ago because my wife complained about me being very restless. I was then diagnosed with PLMD (basically RLS + arms), but not sleep apnea. I still don't have sleep apnea symptoms - "only" restless, hot legs.
I was diagnosed with idiopathic neuropathy. I am 79. I have burning, tingling ect. from my mid thigh down through my feet. Gets worse at night. My neurosurgeon prescribed baclofen 10 mg. I take 2 in the morning. Then because I have burning at night and its hard to sleep he just precribed Pregabalin (lyrica) 50 mg. I am taking one at night and the combo seems to be working. I also do accupuncture once a month now. I am not diabetic, I am healthy and excercise a lot. Anyway, when I was meeting with my doc I mentioned I was on this site and what I have read. Basically this never goes away and its all about managing symptoms. We both believe all the creams, red light and all the other stuff out there really does not help. But the companies out there pushing their products prey on us and we fall for it. Good luck. I'm hoping this combo lasts as I am feeling pretty good, not perfect but good enough.
Yes! Cancer treatment of chemo & radiation has given me neuropathy in my feet. Uncomfortable. I wear supportive shoes which seem to help . Any other suggestions will be accepted! I’d appreciate hearing from others
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@dwilly1978 I don't have a silver bullet but if I get one I'll send it to you - slowly. What has allowed me, I believe, to reduce my doses of gabapentin is 600mg of R Alpha Lipid Acid, taken before bed on empty stomach. I also take magnesium citrate and vitamin b12 methycobalamin .
I was able to reduce gabapentin from 2400 mg daily (600/mg x 4) to 1200mg daily (600mg at night and 2 x 300mg during day). That was over a 3 month period.
I am trying to reduce further. This reduction helped my brain fogginess and balance on my feet.
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1 Reaction@wascaly I have tried Qtensal, it did nothing for me
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1 ReactionThank you @johnbishop! Yes I had an overnight sleep study about 15 yrs ago because my wife complained about me being very restless. I was then diagnosed with PLMD (basically RLS + arms), but not sleep apnea. I still don't have sleep apnea symptoms - "only" restless, hot legs.
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1 ReactionI was diagnosed with idiopathic neuropathy. I am 79. I have burning, tingling ect. from my mid thigh down through my feet. Gets worse at night. My neurosurgeon prescribed baclofen 10 mg. I take 2 in the morning. Then because I have burning at night and its hard to sleep he just precribed Pregabalin (lyrica) 50 mg. I am taking one at night and the combo seems to be working. I also do accupuncture once a month now. I am not diabetic, I am healthy and excercise a lot. Anyway, when I was meeting with my doc I mentioned I was on this site and what I have read. Basically this never goes away and its all about managing symptoms. We both believe all the creams, red light and all the other stuff out there really does not help. But the companies out there pushing their products prey on us and we fall for it. Good luck. I'm hoping this combo lasts as I am feeling pretty good, not perfect but good enough.
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2 ReactionsBest of luck.
Type 2 diabetic.
I was trying Alpha Lipoic Acid, seemed to help, ran out, haven't reordered it yet.
Yes! Cancer treatment of chemo & radiation has given me neuropathy in my feet. Uncomfortable. I wear supportive shoes which seem to help . Any other suggestions will be accepted! I’d appreciate hearing from others