Trying to manage Fibromyalgia without a doctor who is compassionate, on your side and willing to work with you is impossible, simply impossible. I have seen more than my fair share of medical professionals who knew far less about Fibromyalgia than I did. I would ask them, challenge their knowledge, and find they had no clue. I would set out to each new appointment with a glimmer of hope, a bit of optimism that maybe this was the doctor who was going to help me, only to leave in tears sobbing my way home crestfallen and despondent. See they didn't know jack squat about how to treat me so they blamed, discredited and doubted me. But this isn't an illness that's just going to "go away" because modern medicine can't figure it out. Oh no, in fact the number of patients are on the rise. We are well on our way to becoming a nationwide epidemic! But instead of telling you they don't know how to treat you, or being open to learning new things, or referring patients on to specialists based on reported symptoms, they treat the patients like its our fault we got it and our fault we can't get rid of it. Like we are children who play outside after dark with no sweater on and don't eat our vegetables, then complain when we catch the sniffles. "Eat less, exercise more and sleep earlier, then your pain will get better," I've heard it said oh so many times. It makes me want to scream, "Um, excuse me Mr./Ms. Doctor, I would if I could but the source of my illness is causing these symptoms, not my choices you crackpot!"
See they don't truly understand the illness and all the multitude of symptoms that go with it. It's not just a pain syndrome. The American College of Rheumatology is proposing a new set of diagnostic criteria for Fibromyalgia that includes common symptoms such as fatigue, sleep disturbances, and cognitive problems, in addition to the tender point pain. Medical professionals who treat Fibro patients would do well to educate themselves about this illness and start figuring out how to effectively manage their patients symptoms because as I mentioned above, the number of patients is on the rise. And this is where we step in, folks. This is one place we the patients can affect real change. We can quit going to doctors who don't help us. We can quit making them rich and forking over our hard earned dollars to be treated like crap. We can take pride in ourselves and our quality of life and insist on our right to fair and effective treatment. It is critical to have the right combination of meds to manage this illness, keep the pain at bay, ensure sleep at night. And this is not the same for everyone. Part of the problem with Fibromyalgia is that it is such an individual illness, custom to each patient. It takes lots of trial and error and hard work and supported determination to take your life back from the evil clutches of Fibro, but it can be done.
So perhaps the most important step in getting Fibromyaliga managed is to go shopping for a good doctor. Like you search for a good mechanic or housekeeper, don't settle for one who does a half-assed job. They don't deserve your business! Now there are a million reasons not to do this, why it is hard and why it hasn't been done already, but I have found life is full of every excuse not to do anything. The bottom line is we deserve better and will get what we deserve so long as we insist on it. I have compiled some links to aid in finding a doctor on The Fibromyalgia Crusade website. I also put together a Doctor Appointment Pack patients can purchase for a few bucks if they are really lost where to start in turning this crucial aspect of managing Fibromyalgia around. If the doctor you see is not helping you, quit waiting around for them to change, they aren't gonna! We have to be the ones to change. I know it is extremely difficult when in horrible pain, fog-brained and exhausted, but this is quite possibly the most important step to getting Fibromyalgia under control, so put everything you have into it! If you are without insurance or on Medicare you will have to fight all that much harder for yourself. But look at it like this, if you go shopping for a new dress and the red one doesn't look all that hot go back out and look for a green one you like. And if that one is just ho-hum go try on the blue one, and keep trying dresses on until you find the one that makes your eyes sparkle and toes twinkle. Until you look in the mirror and say, "Damn, I look amazing!" Until you have found the right one.
Thanks for joining,
This blog was originally published on 9/28/10. Sadly the state of affairs isn't much improved, but I have seen hundreds of patients whose lives have improved drastically. They quit settling for what was in front of them and started believing in their fundamental right to be treated by a doctor who gives them respect and gets them results.