Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@ldr21

Thank you Debbie! So often the side effects are worse than what I would be being treated for–they want us to think is is a small percentage that side effects happen to–not good if we are one person in that percentage. I am happy you found something that works for you. I will ask my doctor about Gabapentin. I have also heard good things about Alpha Lipoic Acid, have you tried that?

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No, I have not tried Aloha Lipoic Acid, and had never heard of it until joining this group. I’m a pretty firm believer of “where there’s smoke there’s fire “ so I’m looking into it!!

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@mywits

@mywits I too had knee replacement surgery. I complained that the socks I had to wear after surgery were too tight. I also had a hip replaced years ago and don't remember the socks feeling that tight. I was told I had to wear them to prevent blood clots. When I would remove the socks to shower, I could not feel my feet. I told the doctor and he said he never heard of such a thing. I was later diagnosed with peripheral neuropathy. Before the surgery I had no problem with my feet.

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After my first knee surgery I kept going back to the surgeon because I felt there was a limb discrepancy. All they would say is you need to get the other leg done. Well I did, however in the interim I developed numbness in my feet and my two legs up to my knees.
Maybe had they listened to me originally and tried to do something it could have prevented the neuropathy. I never had it prior to the surgery!
Oh well can’t go back.
Thanks for your response.

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@mywits

@mywits I too had knee replacement surgery. I complained that the socks I had to wear after surgery were too tight. I also had a hip replaced years ago and don't remember the socks feeling that tight. I was told I had to wear them to prevent blood clots. When I would remove the socks to shower, I could not feel my feet. I told the doctor and he said he never heard of such a thing. I was later diagnosed with peripheral neuropathy. Before the surgery I had no problem with my feet.

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Welcome @mywits, I'm sorry to hear that you had complications following your knee replacement surgery. I was wearing compression socks before I had my right knee replaced to help reduce the swelling in my legs. You are right. They are tight and they definitely don't make your legs feel any better.

Do you mind sharing how long ago did you have your knee replacement surgery?

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@ldr21

Thank you Debbie! So often the side effects are worse than what I would be being treated for–they want us to think is is a small percentage that side effects happen to–not good if we are one person in that percentage. I am happy you found something that works for you. I will ask my doctor about Gabapentin. I have also heard good things about Alpha Lipoic Acid, have you tried that?

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Welcome @ldr21, I sounds like you also have pain from peripheral neuropathy. I take R-ALA along with other supplements to help my neuropathy. The Foundation for Peripheral Neuropathy has a list of supplements known to help neuropathy — https://www.foundationforpn.org/wp-content/uploads/2016/10/Supplements-Not-highlighted.pdf

Have you been diagnosed with peripheral neuropathy?

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I take Cymbalta 30 in morning and 30 at night. I haven’t noticed any side effects. My problems have improved not sure if it is the Cymbalta but maybe.

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I did not do well on Cymbalta or Gabapentin. Was very lethargic on Cymbalta, even the lowest dose. Gabapentin caused fluid retention which aggravated my heart condition. I take Vit D, B12 5,000 mcg, folate and magnesium. This combo helps take the edge off. Plus, strict anti inflammatory diet. No dairy products, beef, processed foods. Has helped considerably! I’m

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So happy to find this forum. I've had peripheral Neuropathy for 2 years, and have been so frustrated to find that my doctors don't really know what's causing it. They've ruled out many possibilities through many tests, but now all I have to work with is PT. Anyone else have this experience?

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@mickieva

So happy to find this forum. I've had peripheral Neuropathy for 2 years, and have been so frustrated to find that my doctors don't really know what's causing it. They've ruled out many possibilities through many tests, but now all I have to work with is PT. Anyone else have this experience?

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Welcome @mickieva, You are right about it being difficult to determine the cause of neuropathy. Mine was diagnosed as idiopathic small fiber peripheral neuropathy and then because I only have numbness I was told by the neurologist there are no real treatments to help. That led me to Connect and a whole new adventure of learning from the experiences of other members. I shared my story in the discussion – Member Neuropathy Journey Stories: What's Yours? here: https://connect.mayoclinic.org/comment/310341/

Do you mind sharing a little more about your diagnosis and what type of neuropathy you have?

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I ‘ve had neuropathy since I had my right hip replaced… had EMG and I was told it is chronic

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@amart26

I ‘ve had neuropathy since I had my right hip replaced… had EMG and I was told it is chronic

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@amart26, You mentioned you have mild chronic femoral neuropathy from an anterior hip surgery in your previous post. You didn't mention if the doctor had any suggestions to help with the pain or help with getting you back to walking your dog which is important for you. I did see an article that mentions some treatment and exercises that might be helpful.

What to know about femoral neuropathy: https://www.medicalnewstoday.com/articles/324084

Are you able to discuss your symptoms and concerns with your surgeon or doctor to see if they have any suggestions to help you?

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@mickieva

So happy to find this forum. I've had peripheral Neuropathy for 2 years, and have been so frustrated to find that my doctors don't really know what's causing it. They've ruled out many possibilities through many tests, but now all I have to work with is PT. Anyone else have this experience?

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I struggled with PN for about 70 years before I learned how to deal with it. Then at some point a few years ago I heard that Tercumin would help. So I started taking about a quarter-teaspoon when the crap started. It worked so well that now I take that about every 2nd day, with some water. Now I have learned that I have a couple diseases which add to the problem; FKTN and LGMD2m. NIH says both are Rare diseases, thankfully. One of their sources says there are 8 cases of LGMD2m in the world; I would make 9. Both, then are my family myelomas , thus cancers. Anyway, These two are related to each other by mutation and AR . The mutations seem to occur near birth. Also, Tercumin is a blood thinner, so one has to be very careful. I call this pair, along with dilated cardiomyopathy "Yachats syndrome". My dentist found my problems, and others back up the work..

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@johnbishop

Welcome @mywits, I'm sorry to hear that you had complications following your knee replacement surgery. I was wearing compression socks before I had my right knee replaced to help reduce the swelling in my legs. You are right. They are tight and they definitely don't make your legs feel any better.

Do you mind sharing how long ago did you have your knee replacement surgery?

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The right knee was Dec 2018 and the left knee was Nov 2020

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