Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@hinhan

Dealing with it? Indeed. My doctor told me that my Neuropathy is beyond the point of improvement. But who knows. I can either let it take it's course (death) or fight it and die at a later inevitable date. But right now…the pain is 24/7. I am 71 winters and if I make it to the Springtime ….who knows…I may get married and write a book!

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Hello @hinhan, welcome to Connect. I have small fiber peripheral neuropathy and starting my 76th winter. I'm nixing writing the book but do just take it one day at a time the best I can.

Are you taking any medication for your pain or any alternative treatments?

John

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@hinhan

Dealing with it? Indeed. My doctor told me that my Neuropathy is beyond the point of improvement. But who knows. I can either let it take it's course (death) or fight it and die at a later inevitable date. But right now…the pain is 24/7. I am 71 winters and if I make it to the Springtime ….who knows…I may get married and write a book!

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Try spinal nerve stimulation?

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@grandma41

Gabapenti. Totally helps me sleep, but I don’t like the dizziness it has caused.

Sent from Yahoo Mail on Android

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I took Gabapentin for over a year and it did nothing for my pain. But I did sleep like a baby!

Liked by steeldove

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@annac123

I took Gabapentin for over a year and it did nothing for my pain. But I did sleep like a baby!

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Who else has found that Gabapentin doesn't do a damn thing for pain?????

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I've been taking it for about two years. 300 mg 3 times a day. I've told my doctor I don't think it's at all helpful but they keep telling me to keep taking it.
I do plan to phase it out sometime this winter.

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I have been taking Gabapentin of a year, each time it has been increased the type of pain has changed as well as the location. I had two strokes in 2014, and worked hard to reconnect my brain and body, then came the pain because the body/pain connection was faulty. I have increased my Gabapentin to 2 (300mg) at night and 2 (300mg) in the morning, getting use to the side effects is something else, but the pain is tolerable. I cannot say that about the side effect, which will go away or I will go back to one less pill.

mlmcg

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Hi, I was taking 2400 mg of Gabapentin and still had pain. I am now taking Duloxetin and have been able to reduce the Gabapentin some. The first two weeks of the Duloxetin were horrible, but once I adjusted its been a good choice. I get frustrated that I can't do some of the things I used to, but I refuse to give up! I wish you the best.

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@rabbit10 I have had neuropathy over most of my body for about 20 years, I am now 78. I have several types of autoimmune, including rheumatoid arthritis, muscular dystrophy, Cardiomyopathy, cerebral amyloid encephalopathy, headaches, cornea lattice failure, purpura, Gelsolin, Cardiac arrythmia, Spinal stenosis with nodules, several organ cancers, Kidney failures, breaking teeth, pancreomegaly, cardiomegaly, multiple strokes and heart attacks and other stuff. I took gabapentin, Lyrica, etc. The only thing that has helped is Walmart Equate generic super-tylenol PM 8 pills a day, and Sipping Raw Apple Cider Vinegar with honey and turmeric. At least I can sleep now.

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@chowmama2

Hi, I was taking 2400 mg of Gabapentin and still had pain. I am now taking Duloxetin and have been able to reduce the Gabapentin some. The first two weeks of the Duloxetin were horrible, but once I adjusted its been a good choice. I get frustrated that I can't do some of the things I used to, but I refuse to give up! I wish you the best.

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Hi, @chowmama2 – I'm glad that taking duloxetine has been a good choice for you. I'm guessing your pain has reduced?

I like your "refuse to give up" mentality – it's great.

You also mentioned your first two weeks of taking duloxetine were horrible. Will you share more about what you experienced in those weeks when you started the medication?

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@danm

yes i have pn Im taking gapapetin 1.5 at dinner and 1.5 at bed time 900 each time, Im okay during the day put after a few hours in bed I have pain around my shins, at time it feels like its cold it keeps me awake I play on the computer untill I can't stay awake, does laser therapy work has anyone used it?

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I used cold laser as shown below for my neuropathy. It has worked very well. Got immediate results. Save money and buy your own.
healthcaremarts.com/products/low-level-laser-therapy-device-hand-held?aff=8

20181002_060420

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1 1/2 years ago I woke up with numbness and tingling of my face, arms, legs and feet. I thought I slept wrong. The doctor is pretty sure I have polyneuropathy. I have my firs EMG in 2 days, not looking forward to it I now have not only numbness and tingling but pain and muscle cramps in feet, hands and arms and pins and needles. Now having TONS of muscle twitching over my whole body too. I also have burning and pins and needle feelings internally including in my throat almost daily. Anybody else experience this? I'm also wondering what to expect in the future. Will this continue to progress? I'm supposed to go on a trip out of the country in a few weeks with some friends. They are worried about me traveling with them. Should I be worried? Just wondering if some of you that have had issues similar to mine could help me with what to expect. I know everyone is different and it depends on the cause (which mine seems to be idiopathic) but It would be helpful to hear from people dealing with similar symptoms. Thank you.

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@bethb94

1 1/2 years ago I woke up with numbness and tingling of my face, arms, legs and feet. I thought I slept wrong. The doctor is pretty sure I have polyneuropathy. I have my firs EMG in 2 days, not looking forward to it I now have not only numbness and tingling but pain and muscle cramps in feet, hands and arms and pins and needles. Now having TONS of muscle twitching over my whole body too. I also have burning and pins and needle feelings internally including in my throat almost daily. Anybody else experience this? I'm also wondering what to expect in the future. Will this continue to progress? I'm supposed to go on a trip out of the country in a few weeks with some friends. They are worried about me traveling with them. Should I be worried? Just wondering if some of you that have had issues similar to mine could help me with what to expect. I know everyone is different and it depends on the cause (which mine seems to be idiopathic) but It would be helpful to hear from people dealing with similar symptoms. Thank you.

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Hello, Beth. Welcome. An EMG will tell them something, but they probably don't have the time to test nerves all over your body and will probably focus on the area that is worst. I have had all the same symptoms because of cervical stenosis with spinal cord compression at C5 C6. If you have had a whiplash, that is the spine level that is often damaged. Some people get no pain when their spinal cord is compressed, but I had pain everywhere in my body, muscle twitches, pain in legs and feet, gait disturbances, bladder retention, throat pain, feeling like I was choking, horrible headaches up the back and side of my head, etc. I had muscle spasms that moved the cervical vertebra straightening the normal lordotic curve which increased symptoms because it pulled on my spine when there was no fluid space left around the spinal cord. If you have not had an MRI of your cervical spine, I would keep that in mind so you can either rule out spine issues or find them. You could also have a problem anywhere along the spine and compression will affect the levels below that area. The spine is mapped where nerves exit, but spinal cord compression does not follow that organized arrangement. I am a Mayo spine surgery patient and spine surgery resolved all those symptoms, and I've had a great recovery. 5 surgeons missed connecting my symptoms to the imaging in my neck and would not help me. That 's why I came to Mayo after reading a paper co authored by a neurosurgeon that described some similar symptoms, so I came to see him. He helped me right away, and was kind and compassionate. If your tests reveal a spine issue, and you want a recommendation for my surgeon, just ask. Mayo is great place if you need another opinion and they are very efficient and thorough.

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@holhealthcare

I used cold laser as shown below for my neuropathy. It has worked very well. Got immediate results. Save money and buy your own.
healthcaremarts.com/products/low-level-laser-therapy-device-hand-held?aff=8

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Hello @holhealthcare, welcome to Connect. Thank you for sharing your post. There is actually another discussion on Connect for laser therapy that you may be interested in reading and meeting others sharing similar treatments.

Groups > Neuropathy > Laser Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/neuropathy-1/

Are you able to share a little more about the type of neuropathy you have and your symptoms?

John

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@johnbishop

Hello @holhealthcare, welcome to Connect. Thank you for sharing your post. There is actually another discussion on Connect for laser therapy that you may be interested in reading and meeting others sharing similar treatments.

Groups > Neuropathy > Laser Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/neuropathy-1/

Are you able to share a little more about the type of neuropathy you have and your symptoms?

John

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I have diabetic neuropathy of both feet. Using a roller and Chamomile German I was able to nearly eliminate the intense burning feeling on the bottom of my feet and sharp pains on top and toes. I continued to have numb toes and part of the foot. This year I bought the laser. I now feel everything an no pain. Improvement began with the first treatment. It is strange after many years to feel my feet almost normal.

I also had numbness on one side of my face from shingles. This cleared in two weeks of using the laser every other day.

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@jenniferhunter

Hello, Beth. Welcome. An EMG will tell them something, but they probably don't have the time to test nerves all over your body and will probably focus on the area that is worst. I have had all the same symptoms because of cervical stenosis with spinal cord compression at C5 C6. If you have had a whiplash, that is the spine level that is often damaged. Some people get no pain when their spinal cord is compressed, but I had pain everywhere in my body, muscle twitches, pain in legs and feet, gait disturbances, bladder retention, throat pain, feeling like I was choking, horrible headaches up the back and side of my head, etc. I had muscle spasms that moved the cervical vertebra straightening the normal lordotic curve which increased symptoms because it pulled on my spine when there was no fluid space left around the spinal cord. If you have not had an MRI of your cervical spine, I would keep that in mind so you can either rule out spine issues or find them. You could also have a problem anywhere along the spine and compression will affect the levels below that area. The spine is mapped where nerves exit, but spinal cord compression does not follow that organized arrangement. I am a Mayo spine surgery patient and spine surgery resolved all those symptoms, and I've had a great recovery. 5 surgeons missed connecting my symptoms to the imaging in my neck and would not help me. That 's why I came to Mayo after reading a paper co authored by a neurosurgeon that described some similar symptoms, so I came to see him. He helped me right away, and was kind and compassionate. If your tests reveal a spine issue, and you want a recommendation for my surgeon, just ask. Mayo is great place if you need another opinion and they are very efficient and thorough.

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Thank you for responding. I was told if I had numbness in my face that it could not be coming from my neck. I did have a cervical MRI and it showed some mild degeneration. i know the EMG will not show all nerves affected, I'm expecting that it just be a start. I will need a skin biopsy to show if small fiber nerves are affected. The most depressing part is that I've learned despite having these tests and what they show, there's not much they can do for you. Thanks again for sharing.

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