Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016
@grandma41

The gabapinton caused dizziness?  I’ve been taking that to help with my hot flashes.  I’ll have to talk to my dr about that.  Good to know.  My neuropathy went away after the chemo treatment ended.

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Are your hot flashes caused by the neuropathy? I was all done with them and since I started with the neuropathy I have them back. Gabapentin didnt do anything for either. I'm on pregabalin for the neuropathy flashes are still going strong.

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@charly

I think we all have to find our own relief. In 6 years not one of the 9 specialists I saw has really helped the pain of my peripheral neuropathy. I have idiopathic neuropathy. Numb from toe to knees, sometimes freezing , sometimes burning but chronic pain. I tried cymbalta, gabapentin, anitriptaline. All the side effects were unbearable. The neurology tests showed yes indeed I had it . I had to find my own relief. What works for me is mostly meditation(I had practiced many years before neuropathy,) counselling for anxiety and depression,cannabis for insomnia, Saran Wrap around calves and feet even takes numbness away. Weird but try it. I wish the pharmaceuticals would have worked but I learned a lot and most days am content and happy. When flare up comes ,warm bath and Saran Wrap. Very fortunate for me I live in Canada and we have health coverage. Also we have good pain clinics that teach about pain. I have also found anything that bothers my nerves bothers my emotions as well. Too hot, too cold, too windy, people who antagonize me, dumb politics you name it. gentle and middle way seems to guide me through this terrible disease. Appreciation Charly

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I too have idiopathic neuropathy in both legs. I saw where you talked about your knees. I'm starting to feel pain in my knee and was wondering if it had something to do with neuropathy. My pcm had a xray done but it didn't show anything. He prescribed diclofenac. I'm trying this to see how it goes. My neurologist has me taking gabapentin 600mg 3 times a day.

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@psmcphail70

I too have idiopathic neuropathy in both legs. I saw where you talked about your knees. I'm starting to feel pain in my knee and was wondering if it had something to do with neuropathy. My pcm had a xray done but it didn't show anything. He prescribed diclofenac. I'm trying this to see how it goes. My neurologist has me taking gabapentin 600mg 3 times a day.

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I took gabapentin and was a total zombie the whole day! And it affected my liver .

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@psmcphail70

I too have idiopathic neuropathy in both legs. I saw where you talked about your knees. I'm starting to feel pain in my knee and was wondering if it had something to do with neuropathy. My pcm had a xray done but it didn't show anything. He prescribed diclofenac. I'm trying this to see how it goes. My neurologist has me taking gabapentin 600mg 3 times a day.

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Hello @psmcphail70, Welcome to Connect. I also have idiopathic small fiber PN in my legs but just numbness. I have had pain in my knees but it was from degenerative arthritis and bad knees. Before I had a replacement my primary care prescribed diclofenac but it didn't help much with my pain. You might be interested in reading the neuropathy stories members have shared in the following discussion – Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

How long have you been diagnosed with neuropathy?

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@johnbishop

Hello @psmcphail70, Welcome to Connect. I also have idiopathic small fiber PN in my legs but just numbness. I have had pain in my knees but it was from degenerative arthritis and bad knees. Before I had a replacement my primary care prescribed diclofenac but it didn't help much with my pain. You might be interested in reading the neuropathy stories members have shared in the following discussion – Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

How long have you been diagnosed with neuropathy?

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I'VE HAD SYMPTOMS FOR SEVERAL YEARS. HOWEVER, A NEUROLOGIST JUST ORDERED SOME NERVE TESTS AND CONFIRMED THE SELF-DIAGNOSIS! MY BIGGEST CONCERN IS THAT IT IS AFFECTING MY BREATHING. DOES ANYONE OUT THERE HAVE THAT PROBLEM? THANKS. JOHN

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@juanito

I'VE HAD SYMPTOMS FOR SEVERAL YEARS. HOWEVER, A NEUROLOGIST JUST ORDERED SOME NERVE TESTS AND CONFIRMED THE SELF-DIAGNOSIS! MY BIGGEST CONCERN IS THAT IT IS AFFECTING MY BREATHING. DOES ANYONE OUT THERE HAVE THAT PROBLEM? THANKS. JOHN

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John-My ability to hike and run is diminished by the neuropathy, I believe. I am winded and out of breath after 1/4 to 1/2 mile. Normal breathing while not exercising has not been affected. I hope this helps. Regards, Dave

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@juanito

I'VE HAD SYMPTOMS FOR SEVERAL YEARS. HOWEVER, A NEUROLOGIST JUST ORDERED SOME NERVE TESTS AND CONFIRMED THE SELF-DIAGNOSIS! MY BIGGEST CONCERN IS THAT IT IS AFFECTING MY BREATHING. DOES ANYONE OUT THERE HAVE THAT PROBLEM? THANKS. JOHN

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@juanito Talk with your doctor about how autonomic neuropathy can affect your body.

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@juanito

I'VE HAD SYMPTOMS FOR SEVERAL YEARS. HOWEVER, A NEUROLOGIST JUST ORDERED SOME NERVE TESTS AND CONFIRMED THE SELF-DIAGNOSIS! MY BIGGEST CONCERN IS THAT IT IS AFFECTING MY BREATHING. DOES ANYONE OUT THERE HAVE THAT PROBLEM? THANKS. JOHN

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John @juanito, I think that @steeldove's suggestion that you talk with your doctor about your breathing problem and the possibility of autonomic neuropathy would be a good start. Mayo Clinic has more information here:

Autonomic neuropathy – Symptoms & causes: https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829

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@dwlowrance

John-My ability to hike and run is diminished by the neuropathy, I believe. I am winded and out of breath after 1/4 to 1/2 mile. Normal breathing while not exercising has not been affected. I hope this helps. Regards, Dave

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Hi Dave, I have neuropathy, fibromyalgia and other several other issues; I totally understand your situation. Recently while hiking we ran into a ranger who had a tiny (4" x 4" by 1 1/2") oxygen concentrator. He said it was the only thing that allowed him to continue hiking given his health issues. I was so excited, I have asthma along with everything and hiking has become a struggle. I haven't looked into the cost yet, but I plan on talking to my doctor. Keeping moving is so important, and being out in nature so healthy for our spirit and emotional health. Best of luck to you!!

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@chowmama2

Hi Dave, I have neuropathy, fibromyalgia and other several other issues; I totally understand your situation. Recently while hiking we ran into a ranger who had a tiny (4" x 4" by 1 1/2") oxygen concentrator. He said it was the only thing that allowed him to continue hiking given his health issues. I was so excited, I have asthma along with everything and hiking has become a struggle. I haven't looked into the cost yet, but I plan on talking to my doctor. Keeping moving is so important, and being out in nature so healthy for our spirit and emotional health. Best of luck to you!!

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Look into Inogen products. They make a small concentrator with battery packs. This is pulse Oxygen, not continuous flow. The mechanism to produce the Oxygen is based on its size and results in the limitations. It is good for many to allow for getting out and about. You can see pricing on the Inogen site. Not to be used for overnight Oxygen.

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@jakedduck1

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