Rage Post: Mayo Clinic

I’ve been waiting for an appointment with the “chronic fatigue clinic” which is actually just the fibromyalgia clinic at Mayo Clinic for over 4 months. I already had a diagnosis through neurology but neuro couldn’t help me with treatment options as they said chronic fatigue treatment isn’t their thing, fine. I went to the appointment with anxiety about medical gaslighting generally, also the doctor was a man, so extra anxiety. I was prepared for them to not believe my symptoms, i was not prepared for what occurred.

firstly, all their questionnaires are created for fibro, not cfs or even chronic fatigue. the nurse was having a hard time filling out the forms because all the questions were pain based, and I don't have a ton of pain, at least not where its impacting my daily living. when i tried to steer things back to debilitating fatigue( I am moderate at baseline, mod- sever during bad crashes) she wasn't listening to me. so after the first part of the visit which was questions with the nurse, I was already super stressed.

then the doctor comes in, and actually he did listen to me and didn't try to discount any of my symptoms. So i relaxed a bit. Then he goes into central sensitization theory( which I see now has been mentioned on this sub but I hadn’t come across it), I was like sure, because of course stress plays a part of feeling worse, obviously. Then he spent the entire visit (20-30 mins) telling me quote to “think more positive”, “if you tell yourself that your going to feel worse after a task, then you will”, ect ect. I pushed back on this stress management stuff a good amount, I told him I use most all of the methods he mentioned to manage stress as best as I can but it’s difficult to manage stress related to not being able to care for yourself or your child. And it’s hard to not stress about getting worse because you accidentally pushed too far.

I am still processing all of this. I didn’t expect a lot from Mayo, and I’m glad he didn’t dispute my diagnosis but as a research based organization, I was shocked that this is the advice they are giving people when there is so much new research esp about covid triggered CFS, which is what I have. And i waited five months for this?!

Edit to add: I knew it wouldn’t be great, I had to go because my primary is starting not to take me seriously and it’s going to fuck up my disability payments, so I guess the good news is that I still have a CFS diagnosis and disability can continue but I will be pursuing other doctors.