Sounds totally familiar. Try to listen to the series on this site…it helps. Lost my feet,left hand, but got good ideas from here for substitutes to find joy. It seems like it will never exist again, but the people here have ideas that open your mind. I hope you don’t giveup. My thoughts are with you.
@rabbit10 One more thing. Remember that there are over a thousand different possibilities for causing neuropathy, and many thousands of combinations of neuropathic feelings (and lack thereof), so don’t give up after one or two failures of finding the cause and total combinations of effects. Right now I could name about 50 different sites on my body which have known neuropathy. So then you start multiplying 50 x 49 x 48…… to find the exact number of possible combinations. No wonder everyone is different. Even God could not keep track of that nonsense. And in addition, every variant of causes has its own wild set of possibilities. Mis-folded proteins, radon, bacterias, electric shock, heart, brain deposits, etc. Just don’t give up too early. Your journey is just beginning when you recognize you have neuropathy.
I have chemo induced neuropathy in both my feet. Nothing seems to work. I am starting MLS laser therapy on Monday for two weeks on my feet and also for my carpal tunnel. Hope it helps. Is not covered by insurance but FDA approved.
@caf132 Progress! You should know that both neuropathy and carpal tunnel are symptoms of various forms of Amyloidosis, most especially LiteChain forms such as Crohn’s, hereditary ATTRwt, and many others. You probably should have yourself checked for various protein dyscrasias by underging a SERUM FreeLite@ and other tests. ARUP labs, Mayo-Quant, Mass General, Stanford, MD Andersen and other top labs can do it. Local clinic labs rarely have the expensive equipment to do the testing. You may not have Amy, or it may not show yet in your blood, bone or urine. It usually shows beginning around age 50-70, although mine started very young. You might watch some of the Mayo videos done by Morey Gertz, Angelica Dispenzieri or Martha Grogan. They are very good. And have your doctor talk with https://alnylamact.com about checking your DNA to see if you are prone to having this or some other form of Amy. I have written some of my own story, it is free at https://bit.Ly/1w7j4j8 “Amyloidosis” It will give you some other leads. And there is medicine now to combat the disorder, especially “Patisiran”
About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I’ve come to regret it a little since it’s gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I’m waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it’s associated with pre-diabetes but I’m not buying that diagosis just because I’ve had it for a long time and do not have diabetes. I think it’s related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I’m really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening…praying that you all will find some relief.
I have Peripheral Neuropathy which originally was diagnosed as idiopathic until a special blood test showed that I have a rare antibody FGFR3 . Which is the cause. I too have fibro and other autoimmune diseases like Hashimoto’ thyroiditis. Osteoarthritis, pelvic floor dysfunction and I am a kidney cancer survivor.
Yes! I do. It is the results of pernicious anemia which went unrecognized and undiagnosed for several years, not sure just how long. I now have monthly B12 injections, so nerve damage will not further decline but will not abate either. I also have other symptoms.
Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.
Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.
I have peripheral neuropathy with numbness and pins and needles, with burning pain in the balls of my feet and toes. The pain is much better since I had a spinal cord stimulator implant last June, but it's pretty bad if I'm on my feet very long, especially hard surfaces. At bedtime, I put Lidocaine cream on my feet, which numbs them for awhile and helps me go to sleep. I've tried every medication for neuropathy and then some. None of them have helped the pain, and the side effects have eliminated some. The only med that relieves the pain is morphine sulfate contin. I know that lots of people are looking for "natural" remedies, but so far I haven't heard of any. A case could be made that opiates are natural, and some people are helped by another natural, CBD. Maybe a treatment will be found some day that's less dangerous than many in use today.
If you discover one, we'd all appreciate it very much if you'd share it with us.
Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.
Hi Jim your looking for natural remedies then try what I did after suffering chronic pain with none of the pain killers working I approached. Hypnotherapist who was prepared to help me and after 2+ hours with her I went from an 8/9 pain level down to a two that was about 9 months ago and it has stayed at that level but it is something you must believe in
Regards Brian
Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.
Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.
Have you talked to your doctor about the difficulty with your eyes focusing after taking the gabapentin? I think it's important to share that with them. Maybe they can recommend something else that helps.
I'm tagging other Connect members who have discussed gabapentin to see if they have any information they can share. @bonnieh218, @desirea, @jimhd, @donny67, @gman007 do you have any suggestions or information to share with @papillon3 ?
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Sounds totally familiar. Try to listen to the series on this site…it helps. Lost my feet,left hand, but got good ideas from here for substitutes to find joy. It seems like it will never exist again, but the people here have ideas that open your mind. I hope you don’t giveup. My thoughts are with you.
@rabbit10 One more thing. Remember that there are over a thousand different possibilities for causing neuropathy, and many thousands of combinations of neuropathic feelings (and lack thereof), so don’t give up after one or two failures of finding the cause and total combinations of effects. Right now I could name about 50 different sites on my body which have known neuropathy. So then you start multiplying 50 x 49 x 48…… to find the exact number of possible combinations. No wonder everyone is different. Even God could not keep track of that nonsense. And in addition, every variant of causes has its own wild set of possibilities. Mis-folded proteins, radon, bacterias, electric shock, heart, brain deposits, etc. Just don’t give up too early. Your journey is just beginning when you recognize you have neuropathy.
I have chemo induced neuropathy in both my feet. Nothing seems to work. I am starting MLS laser therapy on Monday for two weeks on my feet and also for my carpal tunnel. Hope it helps. Is not covered by insurance but FDA approved.
@caf132 Progress! You should know that both neuropathy and carpal tunnel are symptoms of various forms of Amyloidosis, most especially LiteChain forms such as Crohn’s, hereditary ATTRwt, and many others. You probably should have yourself checked for various protein dyscrasias by underging a SERUM FreeLite@ and other tests. ARUP labs, Mayo-Quant, Mass General, Stanford, MD Andersen and other top labs can do it. Local clinic labs rarely have the expensive equipment to do the testing. You may not have Amy, or it may not show yet in your blood, bone or urine. It usually shows beginning around age 50-70, although mine started very young. You might watch some of the Mayo videos done by Morey Gertz, Angelica Dispenzieri or Martha Grogan. They are very good. And have your doctor talk with https://alnylamact.com about checking your DNA to see if you are prone to having this or some other form of Amy. I have written some of my own story, it is free at https://bit.Ly/1w7j4j8 “Amyloidosis” It will give you some other leads. And there is medicine now to combat the disorder, especially “Patisiran”
I have Peripheral Neuropathy which originally was diagnosed as idiopathic until a special blood test showed that I have a rare antibody FGFR3 . Which is the cause. I too have fibro and other autoimmune diseases like Hashimoto’ thyroiditis. Osteoarthritis, pelvic floor dysfunction and I am a kidney cancer survivor.
Yes! I do. It is the results of pernicious anemia which went unrecognized and undiagnosed for several years, not sure just how long. I now have monthly B12 injections, so nerve damage will not further decline but will not abate either. I also have other symptoms.
Please read my reply to "untreated diabetes:" re gabapentin for neuropathy above. Superwife
Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.
@kgoodwin9
I have peripheral neuropathy with numbness and pins and needles, with burning pain in the balls of my feet and toes. The pain is much better since I had a spinal cord stimulator implant last June, but it's pretty bad if I'm on my feet very long, especially hard surfaces. At bedtime, I put Lidocaine cream on my feet, which numbs them for awhile and helps me go to sleep. I've tried every medication for neuropathy and then some. None of them have helped the pain, and the side effects have eliminated some. The only med that relieves the pain is morphine sulfate contin. I know that lots of people are looking for "natural" remedies, but so far I haven't heard of any. A case could be made that opiates are natural, and some people are helped by another natural, CBD. Maybe a treatment will be found some day that's less dangerous than many in use today.
If you discover one, we'd all appreciate it very much if you'd share it with us.
Jim
Hi Jim your looking for natural remedies then try what I did after suffering chronic pain with none of the pain killers working I approached. Hypnotherapist who was prepared to help me and after 2+ hours with her I went from an 8/9 pain level down to a two that was about 9 months ago and it has stayed at that level but it is something you must believe in
Regards Brian
Have had adverse reactions with Gabapentin. Eyes had difficulty focusing for almost a day after minimal dosage 100 mg at bedtime. What to try??
Hello @papillon3 — welcome to Connect. Not all people react to gabapentin the same but vision problems are one of the less common side effects according to the information on Mayo Clinic's site here:
— https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/side-effects/drg-20064011
Have you talked to your doctor about the difficulty with your eyes focusing after taking the gabapentin? I think it's important to share that with them. Maybe they can recommend something else that helps.
I'm tagging other Connect members who have discussed gabapentin to see if they have any information they can share. @bonnieh218, @desirea, @jimhd, @donny67, @gman007 do you have any suggestions or information to share with @papillon3 ?
John