which doc has "big picture"

Excellent question. I have both the rheumy and the allergist really pushing the pred - like you, I have fought to take as little as possible and want to keep it that way. Right now, it is 7.5 mg a day, and I hate the stuff. I do take prozac (from primary doc), as a pain reliever. The way she explained it, the prozac doesn't really do anything for the pain, per se, but it helps keep me on a more even keel so that I can deal with the pain better, myself. Clear as mud, right? I am allergic to aspirin, nsaids, and virtually everything they have tried for pain. Figures, right? One thing I swear by is Ambien CR. When I take that before bed, I get a good night's sleep. It is rare for me to sleep at all the rest of the time. Both my allergist and rheumy have strongly encouraged me to take the Ambien CR every night if need be, b/c a good night's sleep goes a long way toward fighting the pain. So far, they are right. Sorry this is so long.
Hope you feel better!

Fran and Hippi,

Thanks for the replies. I guess I need to reorganize my thinking to shift some items to my PCP. It's just that my rhumie originally did these things for me. Fran, so glad the AmbienCR works for you. I still wake up 4-5 times a night on it but can go back to sleep more quickly. I wonder what the sleep test results will say. Hippi, yes, I recall now your mentioning on other threads about needing a new PCP. Good luck in your quest. I'm not thrilled with mine but she doesn't hesitate to address any issue I bring up as opposed to my rhumie who dismisses many of the items on my index card list.

Tracked my daughters flights home from her International experience (through the college she attends -- she lived with a host family and it was a great deal) and she is upstairs asleep so I am less stressed.

Hope everyone is having a good weekend,
Stay Strong,
Sue

Well, for me all the doctors I go to, will write notes to each other....so, they all are informed with all my issues. My rheumy sends notes on my check ups to my pcp and all my others doc's I see I make sure that they send notes to my rheumy and copies to my pcp...That way hopfully I don't full through any cracks...

Best of luck with you daughter caming home....My son is due back soon from being in Spain for 6 mos

Sue--
I think that most docs are afraid to treat us, they give us what the text book says, prednisone. I have never found prednisone to do anything for pain, particularly, though cortisone helps, I don't react well to prednisone as a whole. Your doctor might not be realizing that giving prednisone all the time does have repercussions on your health and can cause adrenal insufficiency and other endocrine problems. As for antidepressants, I am of the position that they do absolutely nothing for pain, they merely make you not realize that you are in pain, they short circuit the pain response before it reaches your brain and in other words, you just don't care. You are still in pain and damage is still being done to your body. I think they mask problems and often help people overdo it, because your mental frame of mind may be that you just don't have time to be sick, and so you just go on and do too much.
We feel pain for a reason, it is a protective response, and we don't just feel it for no reason or because we are mentally ill or too sensitive. Just because medical science cannot explain why we may be in pain, does not mean there is not a valid medical cause for it. You have a right not to suffer, not to be in pain.

NSAIDs are very hard on the liver and I'm not a big fan of them for that reason. Tramadol is a non-narcotic pain reliever that is not an NSAID and acts like a narcotic but does not cause respiratory side effects. It is effective long term on chronic pain and I've used it for years and it is non-addicting. I've found you do need to get a few doses in you and keep it in your system daily for it to work best. I have never found a doctor that would not prescirbe it on request, it is a very reasonable medication for chronic pain.

On the anti-depressant side, I think they are estremely addicting, difficult and dangerous to quit, not effective for pain or as a sleep aid--often causing strange dreams and difficulty waking fully, bad on the liver and kidneys, easy to become allergic to, bad side effects including personality changes, and just a way for docs to dismiss patients. For people with real psychiatric conditions, some medications are effective, but I just think they are a doctor's way of avoiding prescribing proper pain medications. Usually, a doctor that will not prescribe appropriate pain medications has a problem with their narcotics license or their license in general and is probably a screwed up doctor.

Another medicine that is used for restless leg that is also used to treat bipolar disorder is klonopin. It's a benzodiazapine and addicting, but it helps me sleep and keeps me from being depressed the next day. I take a very low dose, 1 mg and have been on that for five years with no desire to increase, but I am definitely addicted to that dose. I'm allergic to most antidepressants but have tried about twenty. Have they checked your thyroid and antithyroid antibodies--they need to check both.

I would find a doctor that you can see regularly that is sympathetic and understanding of your situation and will give you what you request, if your requests are within reason. While this doctor may not be the best diagnostician or have a ton of degrees and board memberships, if he or she has a heart, they are a very valuable member of your medical team. Usually these docs don't work in the big medical centers. My primary care is very sweet and though she's missed the boat on diagnosis a few times, she manages my regular blood work fine, is willing to treat my chronic pain and post surgical pain, will refill any of my regular meds from other docs if I need her too, and listens and will refer me out and is a very kind person.

I hope you find a good doc or get your docs to give you what you need and listen to you. Your requests are not out of line. I wish you the best and hope you get what you need. Sending good thoughts your way.

Thanks you all so much!

Good information here and you are all helping me to form a plan. Right now, I am actually feeling pretty good. I have a therapist appointment this afternoon (this is new for me, only my second time) so I will "use her" as a sounding board (she's a psychiatric nurse as well as a counselor). I think I was relying on my rhuematologist to have the big picture (and she clearly does not want to). I like my PCP (Elcamino, she is an internast!) well enough and I think she will give me medications (within reason) and I will work on her being the "hub" (thanks Hippi) while keeping in mind, as Bill said, that we are responsible, in the end, for putting it all together for ourselves.

This leaves me with the NSAIDs/anti-depressant questions. I decided to give up the Paxil because of weight gain and just "did it" (20 mg a day down to 10mg a day for two weeks then cold turkey). I have more energy than I have had in months! So, I think (listening Marji) that I may just stick to taking neither of them unless the pain is "too bad". So, in more pain but have more energy, at the moment, seems good. Oh, and Patty, I have an appointment with my hematologist in Oct. and have taken to seeing him every six months. I actually look forward to my visits as he is such a wonderful person. He had me come in (now over a year ago) so he could hold my hand while he broke the news that I (with bad Raynauds and an ANA off the charts) needed to see a rhuematologist because he suspected I had Lupus and he was the one who recommended getting a second opinion and the doctor to get if from when my (local -- now I drive a distance) rhuematologist wasn't working out.

Stay Strong and thanks for all your support,
Sue

Frank -- hope your son's trip goes smoothly. I spent the day watching the tracker as the little airplane icon moved across the Atlantic and got to breath a huge sigh of relief when it landed at JFK.