I am taking 150 milligrams a day. Helps a little. I still feel needles in my legs and burning in the feet.
By the early morning the feet feel on fire. Any Hope in the future?
I am taking 150 milligrams a day. Helps a little. I still feel needles in my legs and burning in the feet.
By the early morning the feet feel on fire. Any Hope in the future?
I have been paralyzed from the knees down for 43 years. It's a rare form of paralysis where I still can walk badly with the help of two canes. For 35 years I had no feeling in both of my feet. It was difficult getting no feedback from either foot, but I got used to it. About five years ago I started to get back some feeling in my feet. I still could not move them, but I thought this could be the start of something good. I was very wrong, because the only feeling that returned was pain and it never progressed beyond that. I have spent the last several years seeing many specialists trying medications and supplements (too numerous to list). None of them helped at all. I was resigned to learning to have to live with it. I was at an exercise equipment store with a friend and saw something in the corner and asked what it was. It was a vibration plate where you could control the frequency (the speed of the vibration) and the amplitude (the amount of movement). I stood on the plate for 5 minutes. When I stepped off, I couldn't believe it. My lower legs felt warm, something I had not experienced in decades, but more than that there was no pain in my feet. I bought a vibration plate from Amazon......fast forward two years. Every day I do two 15 minute sessions on the plate. I sit in a recliner and rest my feet on the plate while pushing down on my knees with each hand. The warm feeling is temporary lasting only 30 minutes, but the pain in my feet is hardly ever there. Please take note this information is anecdotal and what works for me in my particular set of symptoms may not work for you. Also as I mentioned I saw many "ologists" until I felt that conventional medicine could not help. Amazon sells many vibration plates starting at about $100 Good luck...
I've had CIDP for more than ten years and have cycled through every medication various doctors prescribed. Most did nothing, some helped for a short while, others caused cognitive issues, Lyrica put me in the hospital for 3 days because of my reaction.
In 2017 I had a spinal cord stimulator implant. I had a year of 80% relief. Wonderful!!! After a year, I had to get the settings adjusted every few months, and after 4 years it seemed to be having no effect, continuing to this day. But it was so good not to have as much burning pain in my feet and ankles, as long as it lasted.
I was having IVig infusions for a couple of years and I think it was somewhat helpful, but not worth the effort of driving to the infusion center two days a month and sit in a recliner for 3 hours. Then I had spontaneous bilateral ruptures of my Achilles tendons caused by the antibiotic Levofloxacin and couldn't drive. My neurologist prescribed Hizentra and after the second weekly sub cutaneous infusion the burning was gone! The company arranged to give me a 4 week trial. But insurance denied it and said to try Gamunex. Unfortunately, the prescription was the same as the previous IVig, 2 days a month, and it just isn't what works for me. He changed the prescription to Gamunex sub Q, but CVS messed up and is delivering IV supplies today. So I expect to feel the same until next month when (I hope) CVS gets it right. I'm hoping it will be as effective as Hizentra was. If not, I think my insurance will approve what has proven to work. So frustrating to have to go back to the CIDP pain just because of my prescription supplement.
I'll try to remember to report back with the results.
Did I say that my neuropathy is genetic, non diabetic?
My husband is in so much pain at times. His doctor prescribes Tramadol. That's it. Finding a physician that actually cares and works with a patient, is almost non-existent. They have about 15 minutes per patient and that's a huge part of the problem. It seems that medicine is run by big corporations these days and money is the name of the game. Patient care is a thing of the past. It breaks my heart to see the pain he's in and know it's, sadly, a way of life.
I have upper extremity PN…we suspect radiation scarring from 20 years ago but still no definitive diagnosis. I see a pain specialist and the best solution so far is Tramadol. However, he was also very hopeful a spinal cord stimulator might help. Sadly, it did not but I have 2 friends it had worked well for.
My husband is in so much pain at times. His doctor prescribes Tramadol. That's it. Finding a physician that actually cares and works with a patient, is almost non-existent. They have about 15 minutes per patient and that's a huge part of the problem. It seems that medicine is run by big corporations these days and money is the name of the game. Patient care is a thing of the past. It breaks my heart to see the pain he's in and know it's, sadly, a way of life.
This sounds similar to me. I’ve tried everything. Only Tramadol gives any relief. I’m considering trying Delta 9, BUT I am looking into reasons to NOT take both at same time.
I have post stroke Neuropathy. No one seems to address exactly what happened to my Neuro system, at all. Now, the Neuro system can go through changes, but no on is even establishing a base line! I don't know if what I'm experiencing are usual things experienced post-stroke, or not? And then rhings change!
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I am taking 150 milligrams a day. Helps a little. I still feel needles in my legs and burning in the feet.
By the early morning the feet feel on fire. Any Hope in the future?
I had to go to the max of 600 mg per day and I find much better relief.
I took my first dose of Alpha Lipoic Acid, only 200mg.
My feet have gone from being on fire to freezing cold. Is that normal?
How did you get zinc poisoning?
I have been paralyzed from the knees down for 43 years. It's a rare form of paralysis where I still can walk badly with the help of two canes. For 35 years I had no feeling in both of my feet. It was difficult getting no feedback from either foot, but I got used to it. About five years ago I started to get back some feeling in my feet. I still could not move them, but I thought this could be the start of something good. I was very wrong, because the only feeling that returned was pain and it never progressed beyond that. I have spent the last several years seeing many specialists trying medications and supplements (too numerous to list). None of them helped at all. I was resigned to learning to have to live with it. I was at an exercise equipment store with a friend and saw something in the corner and asked what it was. It was a vibration plate where you could control the frequency (the speed of the vibration) and the amplitude (the amount of movement). I stood on the plate for 5 minutes. When I stepped off, I couldn't believe it. My lower legs felt warm, something I had not experienced in decades, but more than that there was no pain in my feet. I bought a vibration plate from Amazon......fast forward two years. Every day I do two 15 minute sessions on the plate. I sit in a recliner and rest my feet on the plate while pushing down on my knees with each hand. The warm feeling is temporary lasting only 30 minutes, but the pain in my feet is hardly ever there. Please take note this information is anecdotal and what works for me in my particular set of symptoms may not work for you. Also as I mentioned I saw many "ologists" until I felt that conventional medicine could not help. Amazon sells many vibration plates starting at about $100 Good luck...
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4 ReactionsI've had CIDP for more than ten years and have cycled through every medication various doctors prescribed. Most did nothing, some helped for a short while, others caused cognitive issues, Lyrica put me in the hospital for 3 days because of my reaction.
In 2017 I had a spinal cord stimulator implant. I had a year of 80% relief. Wonderful!!! After a year, I had to get the settings adjusted every few months, and after 4 years it seemed to be having no effect, continuing to this day. But it was so good not to have as much burning pain in my feet and ankles, as long as it lasted.
I was having IVig infusions for a couple of years and I think it was somewhat helpful, but not worth the effort of driving to the infusion center two days a month and sit in a recliner for 3 hours. Then I had spontaneous bilateral ruptures of my Achilles tendons caused by the antibiotic Levofloxacin and couldn't drive. My neurologist prescribed Hizentra and after the second weekly sub cutaneous infusion the burning was gone! The company arranged to give me a 4 week trial. But insurance denied it and said to try Gamunex. Unfortunately, the prescription was the same as the previous IVig, 2 days a month, and it just isn't what works for me. He changed the prescription to Gamunex sub Q, but CVS messed up and is delivering IV supplies today. So I expect to feel the same until next month when (I hope) CVS gets it right. I'm hoping it will be as effective as Hizentra was. If not, I think my insurance will approve what has proven to work. So frustrating to have to go back to the CIDP pain just because of my prescription supplement.
I'll try to remember to report back with the results.
Did I say that my neuropathy is genetic, non diabetic?
Jim
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3 ReactionsMy husband is in so much pain at times. His doctor prescribes Tramadol. That's it. Finding a physician that actually cares and works with a patient, is almost non-existent. They have about 15 minutes per patient and that's a huge part of the problem. It seems that medicine is run by big corporations these days and money is the name of the game. Patient care is a thing of the past. It breaks my heart to see the pain he's in and know it's, sadly, a way of life.
-
Like -
Helpful -
Hug
5 ReactionsI have upper extremity PN…we suspect radiation scarring from 20 years ago but still no definitive diagnosis. I see a pain specialist and the best solution so far is Tramadol. However, he was also very hopeful a spinal cord stimulator might help. Sadly, it did not but I have 2 friends it had worked well for.
This sounds similar to me. I’ve tried everything. Only Tramadol gives any relief. I’m considering trying Delta 9, BUT I am looking into reasons to NOT take both at same time.
I have post stroke Neuropathy. No one seems to address exactly what happened to my Neuro system, at all. Now, the Neuro system can go through changes, but no on is even establishing a base line! I don't know if what I'm experiencing are usual things experienced post-stroke, or not? And then rhings change!
-
Like -
Helpful -
Hug
3 Reactions