Posted by john constantine on February 17, 2004, at 15:34:57
In reply to Reflex Sympathetic Dystrophy, posted by CherC68 on January 21, 2004, at 14:38:33
I have a quite similar disorder for which I actually have received the diagnosis RSD several times. The qualitative component of my pain is what RSD sufferers describe, only I have it in the face.I have been on all the meds you mentioned plus nearly every other relevant drug in the PDR -- dealt with this crap for 16 years.
Bottom line: The myths about narcotics are NOT true. There is an excellent medication out there for our type of pain. Its a long-acting narcotic called Methadone. Unlike oxycontin or Duragesic patches, etc. Methadone is not a controlled release formulation of a normally fast-acting drug. A single dose of methadone, according to the PDR, has a pain-killing lifetime of I think 6hrs or so. In my experience the benefits last all day and well into the night. The half-life is something like 24-36hrs.
This drug is a godsend for me! I would have blown my head off 9 years ago without it. It seems to target just the right receptors for this kind of pain. I take 2 10mg. pills every morning and the pain is over 80% cut.
Drs. will tell all sorts of lies about narcotics and Methadone. The worst is, "Narcotics don't work for that sort of pain." Not true of Methadone. Not really even true of the other narcs (they just require proper dosing. this means high dosages. most drs. are far too cowardly to provide this therapy.)
The next is the tolerance myth. You'll build tolerance quickly and wel'll have to keep jacking up the dose. After four years on Methadone I am still at the same dose. My experience with other narcotics is that while dosages need adjustment now and then, its nowhere near so drastic.
Then theres the addiction line. Reality is if you take only enough to kill your pain and don't allow yourself to use it for highs, anxiety, or sleep you don't get addicted. You become physically dependent. All this means is that the drug needs to be slowly tapered off when you discontinue. For people like me -- probably you too -- this doesn't matter. I'm on it for the duration. It's just like taking beta blockers for high blood pressure.
I know how painful RSD can be and thats why I'm ranting like this -- I hate to see drs. fob off patients with stuff like neurontin and the antidepressants.
Take your life back -- find the right doc and get some Methadone. Stick with it for at least a few months because if youre a narcotic virgin you may be pretty sedated at first but tolerance builds to the sedative effect and within 6-12 weeks its not all that bad. A good pain doc. will also give you ritalin or dexedrine (provigil is big now but didn't work for me) t o combat this. Nausea was a big problem for me but there are lots of anti-nausea meds out there like Zofran, Reglan, Tigan,compazine, etc (and I heard the best is domperidone -off label -- which has to be ordered from canada).
A good place to inquire as to how you can find the right Dr. is goedhart.com Subscribe to his chronic pain digest -- a wealth of info. Saved my life.
You gotta really advocate for yourself too. Your doctor sure as hell won't! I look at it this way: It is my responsibility to learn everything I can about my disease and its treatment and how the side effects of such treatment are to be countered. Drs. are just annoying know-it-all types I must manipulate successfully in order to receive prescriptions for the treatment of MY choice.
This is frowned on by the high priests. They call it self-medication.
All medication is self-medication. Different docs write different RXs for the same conditions. Sometimes the difference is based on nothing more significant than what pharmaceutical reps work his territory and whos lately been by. We choose our drs. In choosing our docs we choose our meds. And no one can force us to swallow anything.
Chronic pain patients really have very little choice in these days of narcophobia than to take total control of their care.
poster:john constantine
thread:303801
URL: http://www.dr-bob.org/babble/health/20040102/msgs/314775.html