Neuropathy has been my nasty sidekick for the past twelve years....it is in my feet and part of
my lower legs....tried ever thing from tens to blue laser ,,,,with no results...after a couple of
years of terrible times, my daughter recommend a combination of hydromorph contin and
jamp-pregabalin...it has reduced my neuropathy from a 8 out of 10 to a manageable 2.
I take 6mg hydromorph at 7am and 7pm,,,,200mg pregabalin at 12 noon and 9pm...
Herbert C Wyness
Hello Herbert @wynesshc, Welcome to Connect. It's good to hear that you are getting some relief with the pain medications. I've been dealing with neuropathy in my feet and legs since my early 50s and now at 81, I'm just happy I can still walk. I'm one of the fortunate ones with only numbness and some tingling and no real pain with my small fiber PN. I have also tried many different treatments to help with the numbness without much success. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
Thanks for the wealth of information,,,,I am going to be 89 next March, so life has afforded me some time for
adventure and great times...so the neuropathy has played a small part of my life.....I was in Asia Pacific when the problem started the it was sometime after returning home that I was told what the problem was...the first few years were tough, as I had pain, numbness, needles , cold and sometimes my foot would twist sideways ..
My balance is a bit of a problem and i have fallen a couple of times when working in the yard...
Herbert C Wyness
Neuropathy has been my nasty sidekick for the past twelve years....it is in my feet and part of
my lower legs....tried ever thing from tens to blue laser ,,,,with no results...after a couple of
years of terrible times, my daughter recommend a combination of hydromorph contin and
jamp-pregabalin...it has reduced my neuropathy from a 8 out of 10 to a manageable 2.
I take 6mg hydromorph at 7am and 7pm,,,,200mg pregabalin at 12 noon and 9pm...
Herbert C Wyness
Has anyone tried the Orthoback Vibrastone?It is a hand held device which vibrates and heats when applied to the area of neuropathic pain, feet for example. It’s on the internet with an explanation of how it works.
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
@wynesshc I am taking B-12 Complex drops by Native Path. I take 1 dropper full every morning. I have bought some reflexology shoes that I wear every day for at least 30 minutes. If I feel that numbing feeling coming on when I put the shoes on and walk I can feel that it fade away to some degree. I haven't succeeded in getting that feeling to leave my feet. I also bought a pair of barefoot shoes that I wear when I am in the house and wear them all day long. It seems to help a bit to contain the numbing that is going on. Thank you for replying to my post.
Neuropathy has been my nasty sidekick for the past twelve years....it is in my feet and part of
my lower legs....tried ever thing from tens to blue laser ,,,,with no results...after a couple of
years of terrible times, my daughter recommend a combination of hydromorph contin and
jamp-pregabalin...it has reduced my neuropathy from a 8 out of 10 to a manageable 2.
I take 6mg hydromorph at 7am and 7pm,,,,200mg pregabalin at 12 noon and 9pm...
Herbert C Wyness
Hi John - 6 years ago they did an EMG and saw Severe Axonal Sensorimotor Peripheral Neuropathy, then did the standard checklist of autoimmune and cancer bloodwork and found nothing, do the label Idiopathic was added. I have never had an MRI or skin biopsy, as it’s believed they wouldn’t add any useful information on diagnosis or treatment. The Gabapentin prescription is pretty much the only assistance I get from Neurologist, though sometimes they check my basic arm and length strength, and see if I still don’t have knee/elbow reflexes. The Gabapentin I take comes in a 800mg tablet, and I try to keep them 8 hrs apart. I’m lucky that pain, when it comes, it isn’t a 10, it’s can get to 5 or 6, just enough to know it’s not comfortable and you can’t take your mind off if it, so the medicine can make you maintain at a 0 to 2 all day every day if I’m on a good spell. But if my fingers/toes get cold, that’s the worst type of pain a heating bag and gloves couldn’t cure - the iciness was bone deep, so helpless. That’s the biggest help from Gabapentin for me; it has made those episodes much less frequent and more tolerable when I get a little. Heat like you’re experiencing also happened with me, but to a lesser extent. I can’t avoid the outside temperatures, and I guess it’s because I don’t sweat that makes it tough for me, but it was worse before Gapapentin.
John: I noticed in what you wrote that you say you do not sweat. My family has a disease called Fabry that has impacted about half of us. One of the symptoms is your body does not sweat. You also get a great deal of pain that feels like neuropathy. Not many doctors are aware of this disease but there are more doctors now that know about than did 25 years ago. New York Sinai can do DNA testing to determine if you have fabry. Iowa City's university hospital is aware of this disease and treat it for adults through their pediatric clinic. I don't know why they do it all through the kids clinic, but they do. Cleveland Clinic is suppose to have some doctors that know about the disease. But those in our family with fabry were diagnosed by New York Sinai Hospital which I think was one of the first to be able to test for it. Any DNA provider can do the testing if a doctor orders the DNA test for fabry. The doctor may not know anything about fabry as far as treatment though. There are treatments but none that get rid of the disease. They treatments just slow down the progression. People with this disease are missing an enzyme and with it missing fat can accumulate in all organs. It is especially known for hurting the kidneys and heart. You may want to consider contacting a doctor that knows about fabry and be tested. To my knowledge there aren't many diseases that stop sweating which had my brother's doctor know what fabry was could have had my brother tested as a child. Instead he was 30 before he was tested by a doctor that knew about fabry. I lost a sister to fabry at age 42 before fabry was really recognized by doctors. My brother only made it to age 51. A niece and nephew have it and their treatments having been started when they were younger are doing quite well. I'm no health care doctor/nurse, etc. Just the knowledge of what I have accumulated because fabry has hit some in our family. Best wishes for a healther life.
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
I am not sure how information travels on this network, so again, my daughter has neuropathy in her arms,
and after much research, she and her then doctor came up with this mix....hc wyness
Surely some people have found something that has helped with this awful disease. It would be so encouraging to here from anyone who could offer hope. It would even help to hear about those who have tried so called cures that have failed, at least that would warn others not to waste their money. I for one cannot just give in.
I believe that the Blueprint for Neuropathy program was a scam for me and several others. Don't waste your 10K on that program. There's a thread about it on this site if you want to know more.
I believe that the Blueprint for Neuropathy program was a scam for me and several others. Don't waste your 10K on that program. There's a thread about it on this site if you want to know more.
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Hello Herbert @wynesshc, Welcome to Connect. It's good to hear that you are getting some relief with the pain medications. I've been dealing with neuropathy in my feet and legs since my early 50s and now at 81, I'm just happy I can still walk. I'm one of the fortunate ones with only numbness and some tingling and no real pain with my small fiber PN. I have also tried many different treatments to help with the numbness without much success. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.
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3 ReactionsThanks for the wealth of information,,,,I am going to be 89 next March, so life has afforded me some time for
adventure and great times...so the neuropathy has played a small part of my life.....I was in Asia Pacific when the problem started the it was sometime after returning home that I was told what the problem was...the first few years were tough, as I had pain, numbness, needles , cold and sometimes my foot would twist sideways ..
My balance is a bit of a problem and i have fallen a couple of times when working in the yard...
Herbert C Wyness
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4 ReactionsB12 mecobalamin injections may help.
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1 ReactionThought it seemed plausible about heat and massage but suspicious of other claims.
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1 Reaction@wynesshc I am taking B-12 Complex drops by Native Path. I take 1 dropper full every morning. I have bought some reflexology shoes that I wear every day for at least 30 minutes. If I feel that numbing feeling coming on when I put the shoes on and walk I can feel that it fade away to some degree. I haven't succeeded in getting that feeling to leave my feet. I also bought a pair of barefoot shoes that I wear when I am in the house and wear them all day long. It seems to help a bit to contain the numbing that is going on. Thank you for replying to my post.
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1 ReactionHow did your daughter know about this combination of drugs?
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2 ReactionsJohn: I noticed in what you wrote that you say you do not sweat. My family has a disease called Fabry that has impacted about half of us. One of the symptoms is your body does not sweat. You also get a great deal of pain that feels like neuropathy. Not many doctors are aware of this disease but there are more doctors now that know about than did 25 years ago. New York Sinai can do DNA testing to determine if you have fabry. Iowa City's university hospital is aware of this disease and treat it for adults through their pediatric clinic. I don't know why they do it all through the kids clinic, but they do. Cleveland Clinic is suppose to have some doctors that know about the disease. But those in our family with fabry were diagnosed by New York Sinai Hospital which I think was one of the first to be able to test for it. Any DNA provider can do the testing if a doctor orders the DNA test for fabry. The doctor may not know anything about fabry as far as treatment though. There are treatments but none that get rid of the disease. They treatments just slow down the progression. People with this disease are missing an enzyme and with it missing fat can accumulate in all organs. It is especially known for hurting the kidneys and heart. You may want to consider contacting a doctor that knows about fabry and be tested. To my knowledge there aren't many diseases that stop sweating which had my brother's doctor know what fabry was could have had my brother tested as a child. Instead he was 30 before he was tested by a doctor that knew about fabry. I lost a sister to fabry at age 42 before fabry was really recognized by doctors. My brother only made it to age 51. A niece and nephew have it and their treatments having been started when they were younger are doing quite well. I'm no health care doctor/nurse, etc. Just the knowledge of what I have accumulated because fabry has hit some in our family. Best wishes for a healther life.
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2 ReactionsI am not sure how information travels on this network, so again, my daughter has neuropathy in her arms,
and after much research, she and her then doctor came up with this mix....hc wyness
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1 ReactionI believe that the Blueprint for Neuropathy program was a scam for me and several others. Don't waste your 10K on that program. There's a thread about it on this site if you want to know more.
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3 ReactionsIf you decide to buy compression boots but the cheap ones they do the job 80 pounds is tops james ireland
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