@maggiejk

Wow. Thank you for sharing - I dont have CFS/ME but waiting for a diagnosis of either RA or Fibro after trying to get my symptoms taken seriously for over 5 years. The more things change the more they stay the same.

@JaxVent I’m so sorry that it’s such a struggle!! It took me seven years to get diagnosed and that only happened because I had the strength, insurance coverage, and gas money to get down to Mass General Hospital in Boston from New Hampshire.

I was lucky to get an appointment with the head of sleep and psychiatry. If I had known at the time I might have been upset that they placed me with him but he was great. (I get really upset when they imply it’s a psychiatric issue, but when I got the mono that triggered this disease it was the psychiatrist my PCP referred me to who gave me a lab slip for mono. Everyone else acted like I was a crazy person doing this to myself.)

But it was really distressing for the doc at MGH to tell me that he doesn’t know anyone who treats or diagnosis this condition because the one person in Boston he did know had retired before 2019.

And what kind of doctor says “oh you definitely have MECFS, but I don’t diagnose that.”? What does that even MEAN??? so even after all that I wouldn’t have a diagnosis in my chart if I didn’t have a good PCP who read his notes and then added the diagnosis.

#MGH #MECFS

@maggiejk

that sounds tough, sorry you had the struggle too!

Ive got a blood test on friday to check for inflammation which will apparantly either confirm i should see a rheumatolagist for more tests or rule arthritus out completely meaning I could get a diagnosis of fibro - and this only after I broke down on the phone to GP since going back and forth for years, just being sent to physio or told i'm just lazy 🙄