Duragesic Patch for very painful unknown neurological condition

I am a 34-year-old white female suffering with restless legs for over 3 years now.  Over a year ago, I began to have severe pain in my legs all the time.  I have seen several local neurologists. These neurologists have tried all the blood tests thinkable .I have had an MRI of brain and spinal cord, lumbar puncture,evoked response, EMG, EEG, nerve biopsy and many other procedures/tests that I just can't remember. I have seen neurologists at Emory University and Harvard University and they are as puzzled as my local neurologist.   I have spent over $10,000 out of pocket just on co-pays for my insurance.

The nerve biopsy in my left calf did show atrophy of my nerve cells.   The only abnormal blood test is a positive ANA titer(1:640).After seeing a rheumatologist and going through every blood test to possibly identify what autoimmune disease I may have, he says he can't find any abnormal blood test at all except the positive ANA which is a very non-specific test. He said my sed rate was better than most at 2.  My reflexes are described as very hyper but the nerve cells appear to be dying off according to the nerve biopsy.  My neuro says, "This just doesn't make sense." I have no CNS deficit according to all the tests but I have a peripheral neuropathy as seen in the nerve biopsy. However, contrary to peripheral neuropathy, my reflexes are wildly brisk, suggesting CNS problems. It sounds more like MS, but MRI and LP are both negative.I started off on several Parkinson Disease drugs with no help and also with Neurontin.  Unfortunatley, these and many other drugs didn't help at all.  Klonopin did help me rest a little better but my husband still reported kicking in my sleep and my pain was still present. Very unfortunatley, we started with Lortab 10 mg, 4 q day for a few months which stopped the pain, restlessness and kicking in my sleep.  Seeing that I needed a narcotic long-term,  my doc changed me to Duragesic 75ug/h patch. I have been on this  for 9 months now but the pain is slowly creeping back.

Now, I am in a very bad situation.  I am  physiologically addicted to the most powerful narcotic available and am still in pain and nobody has a clue why or what to do next. My husband hates me being on these narcotics and so do I. I have no libido and am quite depressed.   My whole life is a mess.  I am unable to work (I'm a registerd nurse) because my legs  hurt and I am so distracted by this. I have tried  alternative remedies such as acupuncture and massage therapy to no avail. Exercise just causes more pain and I get cramps very easily.  I am so scared of what lies ahead for me -- constant pain with no end in sight and narcotic dependence.  Can somebody help me?

Melanie

[Christine]

Dear Melanie:

Have you tried Baclofen?  It seems to me that your legs need something in the line of "lets relax them".  Baclofen is a far-cry better than addiction to powerful narcotics.  If you could quiet the nerve impulses, "some" (not all) of the pain would cease.  Back the Baclofen with Neurontin and see what happens.  Neurontin is a work-horse and like Baclofen, can be pushed according to the pain ratio.  If you continue heavy duty narcotics (i.e; duragesic, ms-contin, lortab, etc...) you will inevitably end up on stimulants such as Cylert and Ritalin just to keep you focused.  Believe me, you don't want that.

I have Neurofibromatosis (NF-2) and have been there, done that, and swore that I'd never allow myself to become addicted again.  Check the post, "Trials and Tribs of Morphine Addiction."  I haven't totally kicked the morphine, but I have kicked my dependence on methylphenidate (ritalin).  At present I am stable on Baclofen, Neurontin, Morphine Sulfate and Mexiletine (which is one of the "caines" and does the job by numbing)

Please suggest Baclofen in combo with Neurontin.  You'll be better off in the long-run, which is what you are facing anyhow.  I also suggest that you get into some pain therapy.  If you want to talk a little more with me, my e-mail is ***@****.

Hang in there,

Christine

PS- Perhaps you could work for organizations such as "Ask a Nurse" where you could just sit and talk on the telephone.  Good nurses shouldn't be idle.