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.

@pskroback

Yes, I have it in both hands and both legs below the knees. Compression socks helps the feet and lowers some.
Compression gloves helps the coldness in my hand but does not help my grip. Constantly spill or drop things. Does anyone know of a brand of compression gloves that have good gripping aids on palms and finger? I've tried the Tommy Copper, Copper Fit and several nameless ones from Amazon. Thanks.

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Hi @pskroback, Welcome to Connect. I've often thought about compression gloves and have looked at a few pair but just haven't felt the need yet. I have been wearing compression socks since being diagnosed with lymphedema a few years ago.

I know you've tried a lot of different ones. Have you tried any with a non-slip composite material on the gripping side of the glove? — https://www.amazon.com/Vive-Textured-Arthritis-Gloves/dp/B072FP9H18

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@johnbishop

Hi @pskroback, Welcome to Connect. I've often thought about compression gloves and have looked at a few pair but just haven't felt the need yet. I have been wearing compression socks since being diagnosed with lymphedema a few years ago.

I know you've tried a lot of different ones. Have you tried any with a non-slip composite material on the gripping side of the glove? — https://www.amazon.com/Vive-Textured-Arthritis-Gloves/dp/B072FP9H18

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Yes. Tommy Cooper with silicone dots. I've had them about 10 days and dots are starting to come off. Copper Fit brand with vinyl or rubber lines. Just don't grip. Tried several other brands from Amazon, most with the line type gripping material. None work well. I should say that I have weakened grip in both hands as well as the neuropathy. Neurologist said after last Nerve Conduction Study that I had about 50% motor nerve transmission. My left hand, my dominant hand, he said was "just all messed up". I hate those technical terms. So I'm fighting numbness and loss of motor nerve transmission in both hands.

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@pskroback

Yes. Tommy Cooper with silicone dots. I've had them about 10 days and dots are starting to come off. Copper Fit brand with vinyl or rubber lines. Just don't grip. Tried several other brands from Amazon, most with the line type gripping material. None work well. I should say that I have weakened grip in both hands as well as the neuropathy. Neurologist said after last Nerve Conduction Study that I had about 50% motor nerve transmission. My left hand, my dominant hand, he said was "just all messed up". I hate those technical terms. So I'm fighting numbness and loss of motor nerve transmission in both hands.

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That's definitely the pits @pskroback. The Foundation for Peripheral Neuropathy has a lot of patient related resources and information you might find helpful — https://www.foundationforpn.org/resource-library/

Have you looked into any alternative or complementary treatments to see if anything might help a little? — https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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Thanks for the links. Right now my dog is having trouble getting up and walking. 13 yrs old. I'll check links later.

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@pskroback
My hands haven't been affected by my Neuropathy.
But I was wondering if you had trouble buttoning clothes, using zippers,
tying shoes, dialing the phone, putting a key in a lock or writing? Basically using fine motor skills.
Jake

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Yes. I wear mainly pullover shirts, t-shirts, Polo etc., slip on shoes and sneakers. Sketchers makes some real comfortable one. Zippers, dialing phone and key are a problem yet. Putting my meds in my weekly organizer is a problem. Luckily my son live only a few minutes away. He comes over once a week to do that for me. Then all I have to do is open the section for that time of day and dump them into a small plastic shot glass looking thing. I do this over a lap tray with a towel on it. This way if I drop or spill one, they will probably hit tray. With towel, they won't bounce. Or at least not as bad as hitting the uncovered towel. In general though, the fine motor skills are a problem as well as being able to grip/hold things. Hope this helps some.

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Is there, are there really any treatments? I have about 20%use of my right hand 70% of my left hand and continue to deteriorate. I read the sanexas scam articles and am feeling a tad depressed. source of neuropathy is from reconstuctive surgeryc2-c6.

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@dongoldwater

Is there, are there really any treatments? I have about 20%use of my right hand 70% of my left hand and continue to deteriorate. I read the sanexas scam articles and am feeling a tad depressed. source of neuropathy is from reconstuctive surgeryc2-c6.

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Welcome @dongoldwater, Pain from neuropathy can be a difficult thing to treat like you have found out and there are a lot of companies making money off of neuropathy patients seeking relief from their pain. I have no medical background or training but think some of this is due to the type of neuropathy, it's cause and the fact that each of us are different when it comes to pain threshholds. I think Sanexas has really helped some people including one of our members @duquer who shared his story here – https://connect.mayoclinic.org/comment/645606/.

I don't think it would help my neuropathy as I only have numbness and no pain. Also, my neuropathy diagnosis is idiopathic small fiber peripheral neuropathy. I shared my story and what helps me here – https://connect.mayoclinic.org/comment/310341/. While I feel the supplements I take have helped me and possibly slowed or stopped the progression, they may or may not work for others.

So, my thoughts are there are a lot of treatments available and unfornately it's up to us to find one that helps. That's why I try to encourage members to learn as much as they can about their diagnosis and become a better advocate for their health and treatments. My neuropathy diagnosis is the pits compared to my polymyalgia rheumatic (PMR). If my PMR comes back, I just have to take prednisone until I'm able to taper off it with little to no pain remaining.

It sounds like your neuropathy pain is a result of nerve damage or compression from your spine surgery. There is a discussion on Myofascial Release Therapy (MFR) that others have found helpful in relieving pain from neuropathy and other conditions.
— Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The Foundation for Peripheral Neuropathy also has a list of complementary and integrative treatments that you might find helpful here — https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Have you heard of Myofascial Release Therapy or tried any other types of treatments?

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@johnbishop

Welcome @dongoldwater, Pain from neuropathy can be a difficult thing to treat like you have found out and there are a lot of companies making money off of neuropathy patients seeking relief from their pain. I have no medical background or training but think some of this is due to the type of neuropathy, it's cause and the fact that each of us are different when it comes to pain threshholds. I think Sanexas has really helped some people including one of our members @duquer who shared his story here – https://connect.mayoclinic.org/comment/645606/.

I don't think it would help my neuropathy as I only have numbness and no pain. Also, my neuropathy diagnosis is idiopathic small fiber peripheral neuropathy. I shared my story and what helps me here – https://connect.mayoclinic.org/comment/310341/. While I feel the supplements I take have helped me and possibly slowed or stopped the progression, they may or may not work for others.

So, my thoughts are there are a lot of treatments available and unfornately it's up to us to find one that helps. That's why I try to encourage members to learn as much as they can about their diagnosis and become a better advocate for their health and treatments. My neuropathy diagnosis is the pits compared to my polymyalgia rheumatic (PMR). If my PMR comes back, I just have to take prednisone until I'm able to taper off it with little to no pain remaining.

It sounds like your neuropathy pain is a result of nerve damage or compression from your spine surgery. There is a discussion on Myofascial Release Therapy (MFR) that others have found helpful in relieving pain from neuropathy and other conditions.
— Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The Foundation for Peripheral Neuropathy also has a list of complementary and integrative treatments that you might find helpful here — https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Have you heard of Myofascial Release Therapy or tried any other types of treatments?

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Thanks for the info. No I have not heard of anything my doctor (an internist) thinks I am making it all up so I am now looking on my own. Do you have any though doctors I could see in the phx metro area (my surgeon died 10 yrs ago). I am thinking of I should have an MRI is this a waste of $?

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@dongoldwater

Thanks for the info. No I have not heard of anything my doctor (an internist) thinks I am making it all up so I am now looking on my own. Do you have any though doctors I could see in the phx metro area (my surgeon died 10 yrs ago). I am thinking of I should have an MRI is this a waste of $?

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I think since you mentioned Phoenix area if it were me I would try to get an appointment at Mayo Clinic Arizona, especially if there is a possibility of a compressed nerve from a previous surgery causing the nerve pain and other symptoms.

If you would like to seek help at Mayo Clinic Arizona, the contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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