Posted by john constantine on February 19, 2004, at 17:29:47
In reply to Re: Reflex Sympathetic Dystrophy » john constantine, posted by CherC68 on February 17, 2004, at 18:15:28
I guess I might be "lucky". My trigeminal neuralgia is an atypical case -- I don't get shooting pains. Rather, its a slow and steady burn.
I know exactly what you mean by feeling dumb. It's unfortunate that when we sit in from of an MD, this isn't directly observable.
There are no laws or mandatory guidelines regarding the treatment of RSD -- this protocol you speak of, it's just one of many schools of thought. Although most doctors are nothing but technicians with a cookbook mentality, they do at least possess the flexibility and right to treat patients as they see fit (within reason -- a dr. who hands out dilaudid for a mild case of diarhea crosses the line. But for an extremely painful, life-destroying ailment like RSD or T. Neuralgia, thats a different story.)
You could say the "protocol" is whatever process the Dr. feels comfortable or familiar with. Sounds to me this guy isn't very empathetic. I'd get a Personal copy of my records and split. (always have your own records to give Drs. That way YOU control the information flow. You'd be astounded at the quantity and severity of the errors I've found in records from EVERY dr. I've seen.
If you'd like, I'll e-mail you the names of a few people or places instate that have each helped me for some significant period of time -- until my problem became too complex for them to handle. Just give me your e-mail address at firstname.lastname@example.org I'd rather send them privately.
I had two stellate-ganglion blocks (injection into neck -- real unpleasant) with no results. The Dr., I think rightly, said since I didn't respond to the first two it would be an unworthy risk to get more. I'd be careful. I had a lumbar (what they call those injections that paralyze lower body for birth?) and my back would still hurt from it every day if I weren'tr already on Methadone.
If I could go back in time and do it all over I'd start with the big guns like Methadone or other narcotics and, slowly over months or years, experiment with various other agents. That way, I wouldn't suffer during the trial and error medication process. These guys think of people as broken down cars. Just garage em till they're fixed. I'd still know if the other stuff worked, since narcotics don't 100% kill all the pain.
This too young stuff is bullshit. The way I see it is that I'm too young at 31 to commit suicide or drink myself straight into the void too. Lesser of two evils (if you must call opioids evil): Methadone.
Another interesting point is that its really only opioids, nsaids, and a short short list of other drugs approved by the FDA for pain control. All this crap they shovel into people is off-label, not FDA approved for pain.
I came up with a theory as to the nature and origin of this strange mentality a few years ago after reading Beckers, "Denial of Death." If I can find it, I'll post it up.
Another thing I've heard often is, "It's just not done. No one takes opioids long-term anymore. .....
BTW: You should give capsaicin a shot. Buy the maximum strength zostrix I believe the brand is. Don't get generic. Its a cream that can possibly help.