oxy was the next step for me...i was eating perc's like candy...and oxy was the only thing that did the trick...but- it's not exactly an easy thing to get a prescription for- it'll make you stoned, lower your energy levels and basically make you feel...well...pain free but high. a decent trade off...for a time.
two years later and i'm weening off the stuff. not fun. not at all.
none of these things are a long term solution...have you looked at nutrition? vitamins? i have a friend with fibromyalgia who went to see a nutritionalist, and after six months on various diets got her symptoms down to a very live-able level, and even went back to school full time...
i'm not saying it's a better solution- but anything to avoid the hardest opiates seems a decent way to start...

wishing you pain free days...

kit

My next step was Methadone - not an easy thing to get off if you want to but I found that I did better on it in general than off of it pain wise. It works for more hours, does not make me totally psychotic like other meds, and does rip up my stomach and I can still drive a car on it.

You might want to expain to your doc that any medication that antagonizes NMDA/glutamate, is likely a drug that will likely work for us.

Dextromethorphan has been shown to be effective and it's an NMDA/ glutamate antagonist and other medications that are NMDA/glutamate antagonists are anecdotally effective (such as cannabiniods and opiates.) NMDA and glutamate are excitotoxic and cause damage in the brain if unchecked. My theory is that these chemicals are causing a micro-seizure (discovered by an EEG expert in CFS patients) because we do not have enough of our own natural endorphins to counter these chemicals (a lack of beta endorphins as found in CFS and post polio) and this micro seizure causes most of the cognitive complaints and the general hyperalgesia that we experience (I don't think it's a coincidence that many of our symptoms actually seem to parallel those experienced by addicts in withdrawl; we're basically in permanent withdrawl since our bodies no longer produce enough of our own endorphins.)

Most people think of endorphins as these things that only show up when we get hurt or exercise and this is far from the truth; endorphins help regulate many bodily processes including our sensory physiology, our digestive systems, our ability to maintain focus and attention, etc. For these reasons, any medication that buffers these chemicals (NMDA/glutamate) actually has a neuro-protective effect for illnesses with these kinds of neurological damage and help to minimize and even repair damage in the brain. Yes, this includes opiates, marijuana, etc.

Speciffically with CFS/FMS, this is the main central nervous system problem that we deal with. It makes sense that chemicals that are excitatory and toxic would cause problems with sleep (I'll lay money that the periodicity of the micro-seizure will match up perfectly with the periodicity of the alpha/delta wave sleep anonmoly that causes us to never, ever sleep; unless we get on an effective opiate pain medication of course.)

For these reasons, it's important to have a long acting pain medication along with short acting, PRN meds. without a long acting pain medication that works when you sleep, you will not be able to have any effect on the micro-seizure/alpha-delta wave sleep anomoly and the pain that also keeps one wake while attempting to sleep. I have been using the fentanyl patch at 125 mcg/ hour along with 7 vicodin per day(10/325 strength) for some time and it's the only thing that helps. The fentanyl is fairly weak on it's own but does the important job of working through the night, and while it's still not a joy to wake, it's better than feeling like I just woke up after major surgery.

Never mind that fact that many of us are in danger of committing suicide due to the unbearable pain and poor quality of life, opiates are "chemically appropriate" for our illness and should not be discounted as a treatment. Hope that helps. K.

Sorry it took so long to post. With all the tribe outages, I hadn't even seen this here.

Anyway. For me personally, and lots of folks I've talked to with FM, narcotics simply don't work properly. I've tried hydrocodone, percocet, etc, and they just give me a nasty reaction. I get all sweaty and shaky and paranoid. It almost feels worse than the pain. Now, when I had a cracked tooth not long ago and the dentist couldn't get me in until the next day, the hydrocodone was a godsend. I don't exactly like it, but it didn't have quite the strong reactions and definitely helped, if not to eliminate the pain, at least I didn't mind it so much.

In discussion with other fibro folks, many of us do not get help with painkillers and we've been wondering if that might be part of the syndrome that is fibromyalgia. The wiring of the brain and nerves and pain sensation seem to be a bit wonky, so perhaps that is why traditional pain meds do not provide the relief.

For me, the best treatment of my fibromyalgia pain is usually massage and trigger point therapy, ibuprofen pretty often (tylenol doesn't help me either), and when it gets really bad, a muscle relaxer.

Have you tried other treatments? The muscle relaxers especially help me get through bad flare-ups and help get those knotted muscles to release and allow me a little sleep.

Of course, I am not without pain, but at least it can be more bearable and I can be somewhat functional. I'm still looking for a true treatment, but this is the closest that I've come so far.