Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
You might learn things the doctors never told you.
If you're in the US it's your legal right - use it!
If you ever have to file for disability it's important that you read your records. My judge zeroed in on the "non-compliant" comment that a rhuemy wrote in my chart and I had to explain myself.
I guess I'm done for the day. The words I think I'm writing are coming out as something entirely different and I've had to check this 3 or 4 times already.
She was moving away and leaving the job because of her relocation, and she risked her job and her reputation to make a copy of my records and take them with her on her last day. I didn't ask her to - didn't even know she was doing it.
Turned out the reason she did it was because she knew something that she couldn't tell me as long as she was working there. When I was admitted to the ER under the "care" of this doctor, nobody ever told me that when I got there (by ambulance) I had no measurable blood pressure - I was very, very close to death. Then there was the part about how he never even bothered to return the ER's phone call when they tried to get him on the phone.
Knowing you nearly died seems like something people should know - but I never would have if she hadn't thought it was important enough to take the risk and sneak a copy of my records out with her.
Thankfully today you have a legal right affirmed by federal law, if you live in the United States. If anyone tries to tell you otherwise (and some still will) just say "HIPAA." Most people think of it as the "privacy law" but it also contains a provision that says your records must be shared with whoever you ask to have them shared with, and that also means you. Some doctors will only release them to another doctor - they're violating the law. If you ask for them, they must give them to you or be in violation of federal law.
They do have a right to charge you a "reasonable" fee for making the copies. Some people have a problem with that - I don't. Making copies of medical records is a royal pain in the butt, as there are so many different types and sizes of paper, some of which are one-sided, some two-sided, some colored (which doesn't copy well), and all sorts of issues. It's not an easy job and it can be time-consuming. Pay the fee with a smile - it's worth it.
Some doctors write just abbreviations and/or snarky remarks. Do we want that read by emergency room staff? I haven't read my chart for years (it is 4 fat file volumes long) but back when I was w/ Kaiser I was shocked at uninformed value judgements sprinkled in with solid information.
This post has given me something to think about.