- Joined
- Dec 2, 2016
- Messages
- 3,215
- Reason
- DX FIBRO
- Diagnosis
- 00/0000
- Country
- US
TJB, you are allowed to rant if need be. 
I also have felt great frustration that so little attention seems to be given to research on fibromyalgia or ME. The thing is, fibromyalgia is in itself really an umbrella diagnosis. What it means is "we have no idea what is wrong with you or why you feel this way so we will make a name for people who we can't diagnose with anything we do know about". And that's what we've got. So far. I believe that will change at some point, and instead of fibromyalgia there will be this, and that, and the other, and ABC and so on, but that change is probably going to be very long to come. Part of the problem is that, as we all know, fibro was not even taken seriously until very recently, so any research is way behind the curve.
You're right, if you have fibro doctors can blame everything on that. But just saying....if you suspect you have a symptom, or have a new symptom, that might be something else according to your own research, it is probably best to find a doctor who deals with that disease or syndrome and get tested for it if it has a test. As you say, just because we have fibro doesn't mean that every single thing that feels wrong is automatically fibro.
I also have felt great frustration that so little attention seems to be given to research on fibromyalgia or ME. The thing is, fibromyalgia is in itself really an umbrella diagnosis. What it means is "we have no idea what is wrong with you or why you feel this way so we will make a name for people who we can't diagnose with anything we do know about". And that's what we've got. So far. I believe that will change at some point, and instead of fibromyalgia there will be this, and that, and the other, and ABC and so on, but that change is probably going to be very long to come. Part of the problem is that, as we all know, fibro was not even taken seriously until very recently, so any research is way behind the curve.
You're right, if you have fibro doctors can blame everything on that. But just saying....if you suspect you have a symptom, or have a new symptom, that might be something else according to your own research, it is probably best to find a doctor who deals with that disease or syndrome and get tested for it if it has a test. As you say, just because we have fibro doesn't mean that every single thing that feels wrong is automatically fibro.