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 have some in my feet at times when it starts coming on I apply roll on ice hot to the area and it has worked for me, discovered it by accident one day. So greasy creams are gone. I also have a foot massage machine I use if it gets painful at a higher level.
@bigjohnscho
How many members on connect have you seen post a cure or even significant improvements?
But even if they did it doesn't guarantee you will receive the same results. Personally, I never bought into all the supplement, devices or clinic hype.
I also have epilepsy, neither neuropathy or epilepsy have a cure. I’ve acceped my diagnosis and there limitations and adjusted my lifestyle accordingly. I've had neuropathy for almost 40 years. As the condition progressed my pain eventually stopped, replaced by numbness and other complications. Looking back, the pain wasn't so bad after all.
Sadly many people choose to chase rainbows and end up disappointed and perpetuating the booming fraud market, making crooks richer.
Epilepsy medication has proven to be the most helpful. I have taken these horrible meds for nearly 60 years and none have helped my neuropathy and for 45 years didn't help my seizures either. However, my brother takes 3600 mg of gabapentin and it helps him some.
ALA as I understand it is more likely to help people with diabetic neuropathy. Supposedly it has something to do with insulin but ALA studies for other sufferers has shown little to no effect. Although, ALA given intravenously has a higher success rate.
If you choose to to shop on Amazon for a cure, think about this.
Research showed that in March 2019, there were 1.8 million new unverified reviews, with an average of 99.6% of them being 5-star reviews. Most of these reviews are from people paid to write them.
I hope you don't go broke searching for the elusive cure researchers all over the world have yet to find.
If start supplements, Id ask my doctor and pharmacist about them first.
You might want to check out The Peripheral Neuropathy site for potential treatment possibilities. https://www.foundationforpn.org/
IF IT SOUNDS TOO GOOD TO BE TRUE, IT PROBABLY IS.
@jakedduck1 has anything helped with ur numbness i. legs and feet ? ( if u read my post you will see my problem! i’m soo scared im gonna b in wheelchair by next year at the rate the numbness is moving upward on my legs & upper thighs )
@jakedduck1 has anything helped with ur numbness i. legs and feet ? ( if u read my post you will see my problem! i’m soo scared im gonna b in wheelchair by next year at the rate the numbness is moving upward on my legs & upper thighs )
@pghspinupgal
No, but I have not tried to find anything to control the numbness. I personally don't believe there is anything that helps. Although I have read a few people who claim they have gotten relief. But those claims are rare. My neuropathy is what it is and I've been told it's now permanent. I don't dwell on the possibility it will prevent me from walking although that is a possibility. I have only tried Neurontin, Lyrica and various opioids. None helped the numbness but the fentanyl patch helped the pain some back when I had pain.
I feel a positive attitude helps. Why worry about something that may never happen. If I get other complications I will deal with them as they occure. According to my doctors neuropathy has already caused my ED, bowel and bladder problems along with leg weakness. I'm going to concentrate on the present not anticipate future problems.
Best of luck to you,
Jake
@pghspinupgal
No, but I have not tried to find anything to control the numbness. I personally don't believe there is anything that helps. Although I have read a few people who claim they have gotten relief. But those claims are rare. My neuropathy is what it is and I've been told it's now permanent. I don't dwell on the possibility it will prevent me from walking although that is a possibility. I have only tried Neurontin, Lyrica and various opioids. None helped the numbness but the fentanyl patch helped the pain some back when I had pain.
I feel a positive attitude helps. Why worry about something that may never happen. If I get other complications I will deal with them as they occure. According to my doctors neuropathy has already caused my ED, bowel and bladder problems along with leg weakness. I'm going to concentrate on the present not anticipate future problems.
Best of luck to you,
Jake
I am with you. The doctor told me at my last EMG there is no cure for you. I have tried several things that of course didn't wok. All this fix it stuff is crap as far as I am concerned. I do try to be more positive in my life. But one thing I notice is that if I am extremely stressed, the neuropathy spreads. It's now up to my knees and sometimes I feel loss of muscle as my leg will start to collapse. I am still using a walker and do believe I will be in a wheelchair soon. My legs feel like they are freezing and my fingers feel like they are freezing. It's difficult to type, I spill things constantly. It has affected my bladder ands bowl problems. My kids want me to go into a home, but I still have a functioning brain. I'm 75 and have had this for over 30 yrs. If you are young and it's just in your feet keep your mind active. Yes there are days when I just want to break down and cry and scream that doesn't help either. Accept the fact we all live and die. Hang on as Lon as you can.
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.
Has anyone used bob and brad foot massager as mum is in immense pain with her rheumatoid arthiritis. Tingling pain in feet. Immense pain in knees. What about lymphatic drainage massage. Has anyone had any experience. Look forward to your reply. Many thx
Has anyone used bob and brad foot massager as mum is in immense pain with her rheumatoid arthiritis. Tingling pain in feet. Immense pain in knees. What about lymphatic drainage massage. Has anyone had any experience. Look forward to your reply. Many thx
I have a variety of tricks that help.
PFoot massage- my own. Since I don't want to keep paying for it. I have several massagers- similar to Bob and Brad- one is meant for shoulders and back, BUT if you put it on the floor or however you position yourself, you can putyour feet in between and let it work on your feet, just keep repositioning them for best incredible help. I also have the MediMassage- and use that with feet flat to help circulate the blood, but also vibrates on the outer edges, so take advantage of the sides of my soles and ankles.
I do watch you tube for plantar fasciatiis as well as other PT needs to keep it fresh as needed- so many types of exercises- use as per Dr directed- start slow, don't overdue it, let body heal. Start with 2 days a week to let body get used to it. Different plans for different objectives. Just walking alot different than active sports in PT.
Take advantage of acupressure, acupuncture and use of imagination re color - green for regrowth, and other traditional chinese medicine (TCM) practice that use 5 element theory.
Lastly, consider(Medical)Marijuana Balms and Salves that contain 1-1 THC to other carrier oils /ointments/creams like CBD CBG (Inflammation) and CBN (helps to sleep) If you can take NSAIDS, well, even better.
Everything in moderation and persistence is key. Positivity is best- and humor. Keep lips curled up. Smile while pushing through the pain. It really does help. Grit.
Sadly I have come to the conclusion that GP’s no very little about neuropathy mine just advised me to just live with it. I have been forced to resort to the internet.
I have to admit that the information on the internet is very good but there is the danger of doing more harm than good but it at least makes yo feel as if your doing something.
Does anyone take vitamin B12 and folate on a regular basis and at what dosages.
I take one 1,000 mcg B12 tablet and one 100 mg B1 tablet a day. Four years ago I started on 300 mg of Gabapentin at night and now I take 1,200 to 1,400 mg every night, and 100 to 200 mg during the day as needed but that’s usually only a few times a month.
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 also use an Aspercreme w Lidocaine roller every night. I roll it in between my toes, on my heels, and along the bottom of my feet. Then I put on regular ankle socks.
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 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.
Honestly, I’m 77. My brain still feels and works like I’m 30. However my body feels more like 100. I walk with a cane. I have poor balance. The neuropathy started when I was 63. Now the neuropathy is severe from my hips to my toes. Nerve conduction tests revealed that every nerve in my body is inflammed. Although, no damage. Next step was as spinal tap. Came back negative. Next step lidocaine infusion. 4 weeks in a row. Four hrs each weekly visit. Now 15 years later I can’t exercise at all. Can’t walk or bike ride. Everything out there is a scam. I have a very good Dr and prescription regimen daily. So I have a functional life during the day. But suffer more at night. Then it’s ice pack time.
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I have some in my feet at times when it starts coming on I apply roll on ice hot to the area and it has worked for me, discovered it by accident one day. So greasy creams are gone. I also have a foot massage machine I use if it gets painful at a higher level.
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5 Reactions@jakedduck1 has anything helped with ur numbness i. legs and feet ? ( if u read my post you will see my problem! i’m soo scared im gonna b in wheelchair by next year at the rate the numbness is moving upward on my legs & upper thighs )
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2 Reactions@pghspinupgal
No, but I have not tried to find anything to control the numbness. I personally don't believe there is anything that helps. Although I have read a few people who claim they have gotten relief. But those claims are rare. My neuropathy is what it is and I've been told it's now permanent. I don't dwell on the possibility it will prevent me from walking although that is a possibility. I have only tried Neurontin, Lyrica and various opioids. None helped the numbness but the fentanyl patch helped the pain some back when I had pain.
I feel a positive attitude helps. Why worry about something that may never happen. If I get other complications I will deal with them as they occure. According to my doctors neuropathy has already caused my ED, bowel and bladder problems along with leg weakness. I'm going to concentrate on the present not anticipate future problems.
Best of luck to you,
Jake
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Helpful -
Hug
3 ReactionsI am with you. The doctor told me at my last EMG there is no cure for you. I have tried several things that of course didn't wok. All this fix it stuff is crap as far as I am concerned. I do try to be more positive in my life. But one thing I notice is that if I am extremely stressed, the neuropathy spreads. It's now up to my knees and sometimes I feel loss of muscle as my leg will start to collapse. I am still using a walker and do believe I will be in a wheelchair soon. My legs feel like they are freezing and my fingers feel like they are freezing. It's difficult to type, I spill things constantly. It has affected my bladder ands bowl problems. My kids want me to go into a home, but I still have a functioning brain. I'm 75 and have had this for over 30 yrs. If you are young and it's just in your feet keep your mind active. Yes there are days when I just want to break down and cry and scream that doesn't help either. Accept the fact we all live and die. Hang on as Lon as you can.
-
Like -
Helpful -
Hug
4 ReactionsHas anyone used bob and brad foot massager as mum is in immense pain with her rheumatoid arthiritis. Tingling pain in feet. Immense pain in knees. What about lymphatic drainage massage. Has anyone had any experience. Look forward to your reply. Many thx
I have a variety of tricks that help.
PFoot massage- my own. Since I don't want to keep paying for it. I have several massagers- similar to Bob and Brad- one is meant for shoulders and back, BUT if you put it on the floor or however you position yourself, you can putyour feet in between and let it work on your feet, just keep repositioning them for best incredible help. I also have the MediMassage- and use that with feet flat to help circulate the blood, but also vibrates on the outer edges, so take advantage of the sides of my soles and ankles.
I do watch you tube for plantar fasciatiis as well as other PT needs to keep it fresh as needed- so many types of exercises- use as per Dr directed- start slow, don't overdue it, let body heal. Start with 2 days a week to let body get used to it. Different plans for different objectives. Just walking alot different than active sports in PT.
Take advantage of acupressure, acupuncture and use of imagination re color - green for regrowth, and other traditional chinese medicine (TCM) practice that use 5 element theory.
Lastly, consider(Medical)Marijuana Balms and Salves that contain 1-1 THC to other carrier oils /ointments/creams like CBD CBG (Inflammation) and CBN (helps to sleep) If you can take NSAIDS, well, even better.
Everything in moderation and persistence is key. Positivity is best- and humor. Keep lips curled up. Smile while pushing through the pain. It really does help. Grit.
Happy New Year!
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5 ReactionsI take one 1,000 mcg B12 tablet and one 100 mg B1 tablet a day. Four years ago I started on 300 mg of Gabapentin at night and now I take 1,200 to 1,400 mg every night, and 100 to 200 mg during the day as needed but that’s usually only a few times a month.
I also use an Aspercreme w Lidocaine roller every night. I roll it in between my toes, on my heels, and along the bottom of my feet. Then I put on regular ankle socks.
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2 ReactionsThank you so much Chrisananon in replying with such useful information.
You too &
God bless
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1 ReactionHonestly, I’m 77. My brain still feels and works like I’m 30. However my body feels more like 100. I walk with a cane. I have poor balance. The neuropathy started when I was 63. Now the neuropathy is severe from my hips to my toes. Nerve conduction tests revealed that every nerve in my body is inflammed. Although, no damage. Next step was as spinal tap. Came back negative. Next step lidocaine infusion. 4 weeks in a row. Four hrs each weekly visit. Now 15 years later I can’t exercise at all. Can’t walk or bike ride. Everything out there is a scam. I have a very good Dr and prescription regimen daily. So I have a functional life during the day. But suffer more at night. Then it’s ice pack time.
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3 Reactions