I'm sorry your appointment turned out to be not only a waste of time, but a source of sorrow and discouragement. I wish I could say I'm surprised at how you were treated but I'm not.

I had a doctor tell me that it wasn't that he didn't believe in fibro, it's that nothing they do to treat it really helps so it's incredibly frustrating for everyone involved. The rheumy who diagnosed me pawned me off to my PCP as if he treated all the fibro cases he diagnosed, he wouldn't have time to see other patients who had other illnesses.

I don't know what you're on, or what you've tried, but if you're continuing to get sicker and sicker, you might look up the side-effects of your meds as they often mimick fibro symptoms. When I was on meds, I kept getting sicker and sicker to the point I was almost bedridden. Finally, after suffering some very nasty side-effects, I went off my meds and actually got feeling better as so much of what I was going through was unrecognized side-effects from the meds. Around the same time, I was also forced to clean up my diet due to severe food intolerances that were poisoning me.

If you have a few minutes, check out this video presentation by Dr. Rodger Murphree, a chiropractor who specializes in treating fibro that he put on for a group of doctors:

http://www.youtube.com/watch?v=vPGdqpMxU24

The 8 other parts should come up on the sidebar. It's very insightful and goes quickly.

What I did in getting myself into remission is a part of his protocol. He uses what's called orthomolecular medicine where you give the body the nutrients it needs to function in treating fibro and CFS as he views them as types of low-grade system failure.
His website is treatingandbeating.com. I don't buy my supplements from him, I get them from vitacost.com that sells most name brands at a pretty good discount. They also have a housebrand called NSI that is very good--I think they're renaming them Vitacost.

Sorry that they did not help you. It seems like some docs just want you to come in so they can bill you. They tell ya to turn your head and cough, give you a lolipop and tell you to come back in a month so they can bill you some more. The rhummy that dx'd me wanted me to keep coming back for regular visits even tho they made it clear they would not be treating me, that at best they would give a recomendation of meds to my pain doc. Money hungry. I wish doctors had refund policies and money back guanantees! We would soon weed out all the fakes and scammers.

Hmm, I suspect that when you tell your doctor what happened at this referral visit, you will get some relief from the experience. It sounds like they want you to be part of the research. However, that is not what you went to the appointment for.
I was prepared with my specific questions after having a couple of appointments fit this particular scenario. I asked my primary care provider what I needed to know before going into the appointment to ensure I got my question answered.
What I suggest is sending a letter to the lead rheumatologist stating your unhappiness with the result of your appointment after you speak with your primary care provider to make sure what information they wanted from the referral.
Often, this clears up the misunderstanding of your expectations and what your doctor expectations are.
I have told a doctor after getting the usual pills suggestion that I live with this day in and day out, and I am looking for other options than ones I have previously tried.
I hope you feel better soon!

Sorry that didnt work out for you. Its nice they have a fibro workshop, maybe that would be worth looking into. Hope you feel better soon

Been there, done that, had the same disappointing response. I'm sorry, because I do recall how frustrating it is. We are lucky if we find a good doctor to work with us, so it is even more important to advocate for ourselves. Research, read, and don't give up on finding a good doc. Mine turned out to be my family doctor, though an RA dx'd me, and I've found a wealth of info and support right here with this group.

Make sure your doctor knows exactly how this appointment went. I know from experience that doctors often refer in good faith - and your doctor needs to know this isn't a referral that's going to help his fibro patients.

My doc really wanted me to be seen by a pain specialist to see if there was something else that could be done, and when all she did was throw Cymbalta samples at me and run out the door (I literally had to chase her down the hall to ask the questions my doc really wanted me to ask) I was disappointed and angry. When I was nearly blind from the Cymbalta six days later, she told her nurse to tell me to stop taking it, and when I asked "So, does she want me to make another appointment, or try something else?" the nurse said, "no, she just said stop taking it."

My doctor was surprised and even shocked by the lack of caring and even common courtesy, and he won't refer anyone to her again.

Sorry you had to go through this.

I am surprise at the treatment you received at the U of M. They usually are such an excellent facility. But, that's usually the case...until Fibromyalgia is brought up.

My pain management doc referred me to University of California, San Francisco, which has a large Rheumatology clinic. On the referral he stated he believed there was another undiagnosed condition going on with me. They called me and told me they don't see patients with Fibro or are suspected of having Fibro...period. Nice, huh? We think it's Lupus that I'm dealing with and I'm having a hard time getting a work up for it.

I do hope you find the help you need. This condition really stinks.
Adrianne

I've been through that too. Saw a number of different types of specialists the first year that I had to stop working. As soon as they hear the dreaded "F" word you become a whole different person in their eyes.

The other side of the coin are the ones that say they can help you and say they are specialists, but are really shysters just looking to make a buck off of you by giving you a glimmer of hope.

I think I've seen them all!

Sorry, I know how frustrating it can be. It's good you took your husband with you so they didn't treat you badly.

Did you go to the new U of M clinic that is run by Dr. Nancy Klimas? She is supposed to be the best. I wanted to go there but it was almost $1000 for the initial visit and you have to pay it up front in case the insurance doesn't pay. The initial visit is supposed to last 4 hours.

Is this where you went?

What part of Florida do you live in? I have heard of a really good doctor in the West Palm area if you're interested. Let me know!