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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)

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@jimhd

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That's where I am today. I've tried every medication used to treat neuropathy, with no effect - except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I've been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I'll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I've found I can get off it without any signs of dependency. I'm in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

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Replies to "I began feeling pins and needles in my feet, up to my knees about 5 years..."

Hi Jim, I have a similar problem but only in my left foot and leg that started 8 years ago. I had burning pain in both buttocks, both legs, and both feet caused by lumbar stenosis. After two spinal surgeries I'm left with this burning pain and numbness in my left foot and lower leg. I have tried most non opiate medications and now on Gabapentin at 1600 mg/day. I am trying the Protocol of large doses of vitamins and supplements. It can be found on a private FB site called Solutions to Peripheral Neuropathy. I'm just started trying this. Maybe it could help you too. I pray it helps. Bob

Hi Jim, Bob - here is the link to the group - https://www.facebook.com/groups/SPNPD/. I have the numbness in both legs and feet but no pain so have not needed any drugs. Although I was put on gabapentin for about a month earlier this year until I told the doctor team it wasn't helping with the numbness. They had a group discussion and we talked about the symptoms more which is when they told me the drug does nothing for numbness...only addresses the pain. I started taking the protocol/supplements in September and the numbness was in both legs from just below the knee down through the toes. Today the numbness feels like it's just above the ankles which is some progress. A lot of members in the group report quicker results and hopefully both of you will see results sooner than later.

John

Thanks, John.

Bob, thanks for the website. Right now, I'm working with a pain specialist, waiting to start the process of giving a spinal cord stimulator a try. I try to make only one change at a time, so I know just what works and what doesn't.

Gotta go. We're in town, shopping after the morning church service.

Jim

<br><br><br><br>Hi, <br>I use a cream that I rub into my feet three times a day and as the pain got <br>less and less I quit using it only if I have a flare up.<br>It is called DermaTran Health solutions. I am almost pain free except when <br>it starts again and then I just start rubbing in some for about a week and am <br>pain free again.<br>If you want more info I can send it to you.<br> <br>