Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2 6:09am

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Re - Statins. I have been subscribed statins for several years with no noticeable side effects. August ‘23, I noticed tingling in my right foot. Over the year this progressed to both feet. My toe joints became sore and swollen, the tingling progressed up both legs and was more pronounced in my right leg. Next came pains in both legs and feelings of ‘compression’ particularly in my calfs. Next came pain in my right hip. This was followed by pain in the groin where mesh had been used to repair a hernia.
I am quite a healthy, fit and active 79 year old male and I began to think it this continues, I will be crippled.
My doctor was puzzled. After the consultation, I went home and had a good think. Knowing that leg pains could be a side effect of statins, I decided to not take them and see if they might be the problem or part of the problem. Over the next few days my symptoms gradually disappeared. Now, a month and a half later, I have barely a pain. The swelling in my toes has disappeared, the tingling and leg, hip and groin pain is minimal. It looks like the statins were the cause. It seems that a small proportion of statin users might be reactive to this very helpful, life saving drug. What to do now? I may have to try and control cholesterol by diet… a bit of a dilemma.

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@gzr7

Re - Statins. I have been subscribed statins for several years with no noticeable side effects. August ‘23, I noticed tingling in my right foot. Over the year this progressed to both feet. My toe joints became sore and swollen, the tingling progressed up both legs and was more pronounced in my right leg. Next came pains in both legs and feelings of ‘compression’ particularly in my calfs. Next came pain in my right hip. This was followed by pain in the groin where mesh had been used to repair a hernia.
I am quite a healthy, fit and active 79 year old male and I began to think it this continues, I will be crippled.
My doctor was puzzled. After the consultation, I went home and had a good think. Knowing that leg pains could be a side effect of statins, I decided to not take them and see if they might be the problem or part of the problem. Over the next few days my symptoms gradually disappeared. Now, a month and a half later, I have barely a pain. The swelling in my toes has disappeared, the tingling and leg, hip and groin pain is minimal. It looks like the statins were the cause. It seems that a small proportion of statin users might be reactive to this very helpful, life saving drug. What to do now? I may have to try and control cholesterol by diet… a bit of a dilemma.

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Welcome @gzr7, My primary care doc wanted me to go on statins 5 or 6 years ago (81 now) but I already have neuropathy in my feet (numbness, no pain) and didn't want to make it any worse. After a few lengthy discussions with her I decided to work on lowering my cholesterol numbers by diet and lifestyle changes.

There are quite a few discussions and comments on statin alternatives. I think there also maybe newer non-statin cholesterol drugs on the market but I'm not sure. It is important to discuss with your doctor and come up with a plan. Here's a link to the search results for discussions and comments by members on statin alternatives - https://connect.mayoclinic.org/search/?search=statin+alternatives+.

It's great to hear you are active and healthy and probably already doing most of these suggestions from Mayo Clinic but it might be helpful for a checklist.
-- Top 5 lifestyle changes to improve your cholesterol:
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/reduce-cholesterol/art-20045935

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@carolinlv

Totally unrelated to statins, but I took another prescribed medication (gabapentin) A few weeks ago, and it put me so out of it that I fell in my bathroom in the middle of the night and sustained an L1 compression fracture. I can’t believe how much information is not shared about the medications we are prescribed. I have so many bottles on my counter right now with this new injury after my hospital release. It’s ridiculous! Quality of life is down the drain with all of this stuff! I will be stuck in bed for I don’t know how long, and all because I was overprescribed. And in all likelihood unnecessarily prescribed, according to all the physicians in the hospital. Thanks for the response and I’m really sorry for what you’re going through. The overuse of pharmaceuticals is out of control! Good luck to you!

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I am currently taking gabapentin . It has been a lifesaver for me . I had been on Lyrica . It is an evil medication . I was constipated , anxiety attacks and very dark, dark thoughts . Every person will react differently to medications . Do not give up . It is so hard to keep going when you are in pain . There is nothing you cannot do with planning .

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@bigjohnscho

How much Alpha Lipoic Acid do you take and does it upset your stomach

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I take 1800 mg per day of Alphalipoic acid . It has helped with the pain in my feet . I take R Alphalipoic acid .

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@kbirchem

I took rosuvastatin for a couple of years . I was not a diabetic before taking it . I did my research . I found out that Rosuvastatin can raise your blood sugars . My Dr Malachia Trout at the Fargo VA told me that she knew that the statin would raise my blood sugars . She said that she made a decision that was best for me . When I started having tingling in my toes and feet . I asked her if the statin could have caused the problems . She said no. But , she never once told me that the statin could take me from a prediabetic to a diabetic . I stopped taking rosuvastatin and my blood sugars went down . I now am taking Alphalipoic acid . It helps with the tingling and burning .

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Please tell me what the brand of ALA is that you take and how much.

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@gzr7

Re - Statins. I have been subscribed statins for several years with no noticeable side effects. August ‘23, I noticed tingling in my right foot. Over the year this progressed to both feet. My toe joints became sore and swollen, the tingling progressed up both legs and was more pronounced in my right leg. Next came pains in both legs and feelings of ‘compression’ particularly in my calfs. Next came pain in my right hip. This was followed by pain in the groin where mesh had been used to repair a hernia.
I am quite a healthy, fit and active 79 year old male and I began to think it this continues, I will be crippled.
My doctor was puzzled. After the consultation, I went home and had a good think. Knowing that leg pains could be a side effect of statins, I decided to not take them and see if they might be the problem or part of the problem. Over the next few days my symptoms gradually disappeared. Now, a month and a half later, I have barely a pain. The swelling in my toes has disappeared, the tingling and leg, hip and groin pain is minimal. It looks like the statins were the cause. It seems that a small proportion of statin users might be reactive to this very helpful, life saving drug. What to do now? I may have to try and control cholesterol by diet… a bit of a dilemma.

Jump to this post

I am having blood work too see how my numbers look after four months without statins. They’re going to have to be really awful to make me go back on that drug. Dietary changes aren’t as bad as they sound and you get used to them. I don’t eat baked goods anymore, no red meat, and I try and stay away from saturated fat and added sugars in all foods. I’ve lost over 30 pounds which I’m sure will help. Unfortunately, unlike you, I still suffer the numbness in legs and feet this many months after stopping. I can’t positively blame it on the statin, but I didn’t have it before I started them. I hope you are able to find a solution in one of the newer options that are non-statin like Repatha or Praluent. Good luck to you!

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@kbirchem

I am currently taking gabapentin . It has been a lifesaver for me . I had been on Lyrica . It is an evil medication . I was constipated , anxiety attacks and very dark, dark thoughts . Every person will react differently to medications . Do not give up . It is so hard to keep going when you are in pain . There is nothing you cannot do with planning .

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I believe the doctors surprise in my hospital was not so much related to the gabapentin as it was to the dosage I was given. I was started at 300 mg. One of my doctors said they usually start anyone at my age only 100 mg.🤦‍♀️

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@carolinlv

I am having blood work too see how my numbers look after four months without statins. They’re going to have to be really awful to make me go back on that drug. Dietary changes aren’t as bad as they sound and you get used to them. I don’t eat baked goods anymore, no red meat, and I try and stay away from saturated fat and added sugars in all foods. I’ve lost over 30 pounds which I’m sure will help. Unfortunately, unlike you, I still suffer the numbness in legs and feet this many months after stopping. I can’t positively blame it on the statin, but I didn’t have it before I started them. I hope you are able to find a solution in one of the newer options that are non-statin like Repatha or Praluent. Good luck to you!

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Thank you for your reply, it was very helpful. I haven’t got my diet sorted yet. It will probably take some time to make the changes. I haven’t heard of Repatha and Praluent, but I will look into them.
I hope your numbers are good at the checkup.

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@gzr7

Thank you for your reply, it was very helpful. I haven’t got my diet sorted yet. It will probably take some time to make the changes. I haven’t heard of Repatha and Praluent, but I will look into them.
I hope your numbers are good at the checkup.

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Both are injections done twice a month I believe. Most insurance does not cover it initially, but I had three different statins that did not agree with me and my cardiologist was able to push it through easily.

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@cecelia19

Please tell me what the brand of ALA is that you take and how much.

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I take 1200 mgs per day . I take 600 mgs in the am . I take 600 mgs at bedtime . It is R Alpha lipoic acid .

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