Peripheral Neuropathy - Anyone else?

Posted by maallen1943 @maallen1943, Aug 1, 2011

I am 68, have type 2 diabetes, and have developed bad neuropthy in my hands an feet. Doctors give me no help.

Does anyone know anything about this probem?

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

@suzed

I must have bought 30 pairs of shoes after a revision procedure went wrong two years ago that gave rise to peripheral neuropathy and CRPS. None felt comfortable walking with inflamed metatarsals and numb toes.

Used to walk for miles, now limp around the supermarket. Feel very bitter since this never should have happened, but I didn't have enough 'proof' for medical malpractice suit. This WAS elective surgery after all - MY decision, and MY ruinous outcome.
Is the only recourse pain pills or a spinal cord stimulator implant?

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I have tried the spinal stimulator. As far as working, it did as promised, except I was under the impression the battery would last much longer than it did. Mine lasted a little over 2 years. When it was replaced, and the stimulator moved just a little because it turned out to be too close to my spine, it became infected. I had to be rushed to the hospital, and it was a mess after that. That was right before the Covid came out . Days before!
I have since been taking Lyrica. I am very pleased with it.

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Have PN almost year
Swollen legs &
Numb hands

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@carol228

I have tried the spinal stimulator. As far as working, it did as promised, except I was under the impression the battery would last much longer than it did. Mine lasted a little over 2 years. When it was replaced, and the stimulator moved just a little because it turned out to be too close to my spine, it became infected. I had to be rushed to the hospital, and it was a mess after that. That was right before the Covid came out . Days before!
I have since been taking Lyrica. I am very pleased with it.

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That sounded horrible, and I'll tell the pain specialist what happened to you. I didn't even think about infection with the stimulator - may rethink it now.

Glad to hear Lyrica is working for you.

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@cher27

Not sure what surgery you had, but I'm sorry & know how you feel. I had vein ablation a year ago that made my neuropathy so much worse. Of course, I was told that increased circulation would be so great, but instead they banged into nerves during the procedure. Now I have numbness & swelling that I never had before, added to the pain. "Used to walk for miles, now limp around the supermarket" sums it up for me too (as well as the bitterness). This shoe is not bad: Naturalizer Macayla Pelican Grey Sneakers. You can have a look on Ebay. I just bought another pair this morning. They have a zipper on the side, so if they start feeling tight, you can just unzip them. Not a long haul walking shoe, but who can do that anymore, right?

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I had 5th metatarsal osteotomy, and later found the surgeon initially didn't use a nerve block. This was in November 2021, and I'm still suffering post-op pain. What did he do - slice and dice the nerves? (similar to your 'banged into the nerves')
His operation intensified my symptoms of peripheral neuropathy along with compromising the several autoimmune conditions I have. Yes, the numbness, tingling and inflammation is unbearable, but will check out the Naturalizer Macayla Sneakers. Anything for relief. Thanks for the tip, Cher.

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@carol228

I have tried the spinal stimulator. As far as working, it did as promised, except I was under the impression the battery would last much longer than it did. Mine lasted a little over 2 years. When it was replaced, and the stimulator moved just a little because it turned out to be too close to my spine, it became infected. I had to be rushed to the hospital, and it was a mess after that. That was right before the Covid came out . Days before!
I have since been taking Lyrica. I am very pleased with it.

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I would like to talk to you more as I am very close to having one put in
How do they replace the battery and which brand did you go with?

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@suzed

That sounded horrible, and I'll tell the pain specialist what happened to you. I didn't even think about infection with the stimulator - may rethink it now.

Glad to hear Lyrica is working for you.

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I’m sure it was truly an accident, of some sort. But I had to have a pic line in for six weeks. It was a trial!

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@bettyg81pain

I would like to talk to you more as I am very close to having one put in
How do they replace the battery and which brand did you go with?

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The brand I had put in was ‘Medtronic’ .
They let you try it out first with a portable one to see if it helps you. Then they put part of mine close to my
spine at my
waistline, and the biggest part lower in a cleft part. I thought the battery would last at least 5-7 years. But my neuropathy was so bad, I was constantly using it, and it didn’t last but about 2-2,1/2.. they had to take out the larger part to replace the battery.
I’m sure things have improved since I’ve had mine. Good luck to you. Please let me know how you are doing. Maybe one day we will have a cure.

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I went food shopping today, and the pain was so great, could barely walk. The entire foot feels broken, and can barely think. It's getting so bad, I don't want to go out.
The pain specialist has me on Pregabalin, building up to higher doses, but that only stops the pain temporarily. Do they not have any other solution? He knew I had CRPS and neuropathy months ago, and this long delay only worsened my condition to the point of my being permanently crippled.
Why can't I be helped? Lidocaine patches are a joke, and haven't even been referred to a specialist who can insert spinal cord stimulator device. This has ruined my life and independence. At my wit's end.

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@suzed

I went food shopping today, and the pain was so great, could barely walk. The entire foot feels broken, and can barely think. It's getting so bad, I don't want to go out.
The pain specialist has me on Pregabalin, building up to higher doses, but that only stops the pain temporarily. Do they not have any other solution? He knew I had CRPS and neuropathy months ago, and this long delay only worsened my condition to the point of my being permanently crippled.
Why can't I be helped? Lidocaine patches are a joke, and haven't even been referred to a specialist who can insert spinal cord stimulator device. This has ruined my life and independence. At my wit's end.

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Are you under the care of a neurologist?
Do you have any past problems taking opioids? I have a prescription for Percocet 7.5 mg. I can take 1 1/2 pills per day. Since I switched to Tegretol for my neuropathy, and have been going to PT twice a week, I usually only take one pill per day. When my pain really flares up from activity, I have Prednisone 10 mg that I can start taking. I did that this morning, and will take it for 5-6 days until my hand pain ( from gardening) calms down.
All these solutions have come over time, working with a neurologist, pain doctor and rheumatologist. It’s like a part time job, keeping my pain and neuropathy symptoms under control.
It sounds like you need to call your doctor’s office today and tell them exactly what you just wrote. You need to be seen, re-evaluated, and get a new plan. Don’t feel bad about doing that. The doctor can’t help you if he doesn’t know, so keep working with them until you find the right solution. And show him this!
I have idiopathic length-dependent small fiber poly neuropathy, and (maybe) fibromyalgia. I am a retired nurse.

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@julbpat

Are you under the care of a neurologist?
Do you have any past problems taking opioids? I have a prescription for Percocet 7.5 mg. I can take 1 1/2 pills per day. Since I switched to Tegretol for my neuropathy, and have been going to PT twice a week, I usually only take one pill per day. When my pain really flares up from activity, I have Prednisone 10 mg that I can start taking. I did that this morning, and will take it for 5-6 days until my hand pain ( from gardening) calms down.
All these solutions have come over time, working with a neurologist, pain doctor and rheumatologist. It’s like a part time job, keeping my pain and neuropathy symptoms under control.
It sounds like you need to call your doctor’s office today and tell them exactly what you just wrote. You need to be seen, re-evaluated, and get a new plan. Don’t feel bad about doing that. The doctor can’t help you if he doesn’t know, so keep working with them until you find the right solution. And show him this!
I have idiopathic length-dependent small fiber poly neuropathy, and (maybe) fibromyalgia. I am a retired nurse.

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I went to a neurologist a while ago who passed me on to an 'assistant' for a nerve conduction test whose results were inconclusive as he neglected to perform a needle electromyography nor diagnosed any nerve damage. Utter waste of my time.
I've bought Soothe Socks as it said it helped neuropathy, but who knows?
Then back to my pain specialist who referred me to another pain specialist where I thought we'd discuss spinal cord stimulator device. He never mentioned it except physical therapy, increased dose of Pregabalin, blah, blah. Medication simply blitzes the body with painkillers; it can't treat each delicate nerve on an individual basis. You're right; if I can locate a 'bona fide' neurologist (London) hopefully he'll be more forthcoming with my urgent need for help. I WILL show him your comments. Thank you.

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