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neuropathy with Lupus

  I have been living with what is assumed to be lupus for about four years, and we have tried most of the common treatments.  whenever possible, I choose to stay off of all drugs.  I say assumed to be lupus due to a very high ANA count, usually over 2580, with a speckled pattern.  other tests, (anti dna, etc. ) have not been positive, but a confilicting test, the ACE level which is consistent with sarcoidosis, has been high and continues to climb.  It is currently around 57.
  In general I cope well with the multiple symptoms of joint pain, fatigue.  Thanks to a brain shunt, headaches are less severe.
  My question:  I have been told that the extreme pain in my feet, and to a lesser extent my hands, is due to periphial neuropathy probably brought on as complications of vasculitis assocated with the lupus.  The pain is ridiculous.  I can only stand on my feet for a couple of hours, they hurt during that time, but after that the pain is unbearable.  The only thing that helps is to get off of them, which is not always convenient.  I can work with the pain in my hands by making a concious effort to exercise them.  What can I do about my feet?  Also, they hurt very much in the morning, before I stand on them.  When I stand on them the pain is initially worse, then lessens.
  I felt stongly about not taking medications unless I couldn't handle the pain, but I also worry about whether or not I'm doing what is best for my feet.  My rhuematologist does not seem particularily interested in the pain in my feet, and I don't know if I should see a different doctor for this specific problem.
  I'd appreciate any input.
  Thank you.
Dear Kim,
Although you are not fond of taking medications; there are several that are effective in the treatment of neuropathic pain. The medications will not prevent progression or reverse the nerve damage already established. The medications are used for pain control.   The medications include simple analgesics (aspirin, acetominophen, and nonsteroidal anti-inflammatory medications), amitryptiline, desipramine, nortryptiline, clonazepam, neurontin, and carbamazepine.  Discuss these options with your doctor.  If ever you are interested in getting an evaluation at CCF call 1-800-CCF-CARE.  Good Luck.

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