I have been told my CFS/FMS is not an exclusionary diagnosis, anyone else?

So my rhuematologist and GP have both told me that my diagnosis is not exclusionary and that they believe there could be an underlying illness on top of it. Has anyone else been told this.

As a result of my daily migraines and brain 'lesions that have shown up on a 2 scans, they believe there may be something else. I don't understand why they cant figure this out. I was also told by my pain doctor that fibro is usually a diagnosis given when they don't know what it is. What do I tell people when they ask what fibro is? I don't even know what to say half the time except to describe my symptoms. The way the pain doc explained it was like he didn't think it was a real diagnosis. I find this discouraging and an uncomfortable thought.

Alot of doctors have thrown out the Lupus disease, but are reluctant to put that diagnosis on me. I am so confused. Is fibro a real illness? My rhuematologist gave me that diagnosis almost a year ago. She is certain this is part of what is wrong with me, I guess I am just having trouble accepting it and knowing how to explain it to people.

Any information or advice would be great.

Thoughts and prayers with everyone tonight xo

Lynds

Your pain doc is wrong, it is real. I think fibro sometimes gets called an exclusionary disease because most docs are diligent enough to rule out other illness, some that are very curable. I tell people that fibro is caused by a glitch in my brain that changes the way my body processes pain and stimuli. Because of that my brain tells me I am constantly in pain, along with a bunch of other things. If they're interested, I tell them more about medical research. I never let them continue to think it's not a real illness. There is good science being done by creditable researchers that says otherwise. Use Google Scholar to find out more. I've never looked to find any studies about brain lesions, although I have abnormal scans as well. The neurologist told me that they can be benign changes or caused by something more serious. With scanning technology, he said docs are able to see so much more than ever before, so it's tough at times to figure out what is just "normal" and what isn't if it's not completely obvious like in Multiple Sclerosis.
If there is something else going on, I hope your docs figure it out because maybe it's completely fixable. Hugs.

Hi Lyndsey, no matter what you call it you pain is still real. My Dr. saying I had fibro was nice because he is a smart guy and listens to his patients, but it also left me in the same boat managing pain on a daily basis. I guess my point is this your pain is real no matter what and we believe you. Good lock...Mike.