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Thread: Is it really Neuropathy?

  1. #1

    Is it really Neuropathy?

    I am desperate for answers and hope someone else can help me.

    I have been in extreme pain for almost a year and the pain is advancing day by day. I am diabetic and have been for years. In June I had a mild stroke and put on insulin so that the diabeties is under control but my neuropathy is not. The pain I believe was masked for over a year due to pain medications for kidney stones for over 18 mths. During this time my sugar was out of control (betw 300-500) which they said was due to pain levels. After the stones were removed and I was no longer on medications I realized my neuropathy pain had advanced from just my feet to every area of my body from the neck down.

    I have sharp shooting pain and burning from under my arms to my wrists in both arms. Both hands have shooting, sharp and burning pain. Sharp shooting pain from top of thighs to my knees and from my ankles up to my knees. My feet are numb with burning and shooting pains and walking is hard as I often lose my balance. Both hands and feet are extremely sensitive to any touch at all. In the lower arms and the upper calves there is what I call surface numbness. I also have burning and shooting pain in my tailbone and find sitting for any extended time horrible.

    My GP treated the neuropathy for several months with Vicodin ES but after a while they lost effectiveness so he referred me to a pain clinic. The doctor at the clinic did tests and seems stumped by the fact that the tests did not seem to show that I should have the extent of pain I am in although they did show damage.

    He took me thru treatment of a number of medications that had no effect...neurotin, lyrica, cymbalta. All of them helped a little with the burning pain but little else. He then began treatment with opids and Physical Therapy 3X's a week. The PT included electrical impulse and deep muscle massage which has had little effect and the touching required by these treatments causes me extreme pain.

    I am curently using methadone 60 mg daily and vicodin es for breakthru pain. I can not seem to get the pain doctor to realize that there is no break thru pain...the methadone reduces my pain but does not ever eliminate it! I therefore take the methadone regularly and take the vicodin prior to PT and after when the pain is unbearable or after physical activity such as playing with grandkids or cooking.

    Now for my question...I have read a lot online and I am not convienced that all this pain is neuropathy. As a baby I had polio of the spine. I have ran acrossed several articles about Post Polio Syndrom and I am wondering if that isn't what is happening to me. I have tried to ask my GP, my pain doctor and the neurologist if it could be PPS and they just blow me off.

    If it is neuropathy then fine....I have resigned myself to the fact that I will be living on pain medications the rest of my life. But, I would like someone to actually show me test results to confirm this or something to show me exactly what is happening.

    I have gone from neuropathic pain in my hands and feet to pain just about everywhere but my head in just a few months and frankly I AM SCARED.

    If anyone has had the same experiences or can offer any suggestions in just finding out out exactly what is causing this I would greatly appreciate it. At this point I can hardly walk and using a cane is impossible because my arms hurt so badly and test show I only have about 40% use of my arms. Driving is difficult due to my arms when I turn. Sitting is hard due to pain in my tailbone and picking up my grandchildren leaves me unable to move for a day or two almost.

    None of my doctors seem to be listening to me...they seem content that it is neuropathy and to keep me drugged up to allow any moving around.

    Any suggestions or help? or, am i just to live with this forever?

  2. #2
    I'm not familiar with PPS or what it takes to deal with that medically, but my suggestion would be to find a doctor who is skilled at treating that condition and have him/her do an assessment.

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