How can I feel comfortable with a possible diagnosis of chronic fatigue syndrome when I've spent a year going to a doctor who doesn't believe in it and who has made me feel like there is nothing wrong with me?
So over a year ago I posted a question about how I felt ill after giving a blood donation here
. I feel like whatever was wrong with me, I absolutely never recovered. For the past year I've gone to my doctor (she's been my doctor for many years now) and I feel like she has absolutely never taken me seriously.
My symptoms are pretty generic but they are incredibly real and only getting worse. Fatigue, intolerance to exercise, joint and muscle pain, low grade cough and sore throat, headaches.
First she put me on Wellbutrin (I'm already on Celexa with excellent success for anxiety) because with a history of depression and a negative Epstein-Barr virus test, that, to her, was the only possible explanation for such chronic fatigue. I didn't feel depressed and the medicine gave me severe anxiety so I stopped taking it. No real follow-up from her regarding my fatigue in another visit where she said it was probably just stress related.
I persisted again and she ran a TSH level on me and that was it. She was very dismissive of me and I would leave just feeling like it must just be in my head.
Anyway, this week I made another appointment at the same clinic, but this time I saw a different doctor (my doctor wasn't available). He did a battery of tests on me (stat, so we could discuss the results that day), actually took the time to explain what could be wrong with me, and he took me seriously. I was shocked since this was not what I was used to. He said it sounded like chronic fatigue syndrome, and after my tests came back (all normal), he said he wanted to move on to more tests like RF factor for autoimmune disorders, but given I have no markers of inflammation, he thinks it is chronic fatigue. He explained that the etiology is unknown, but my abrupt onset and persistent symptoms fit the bill. He also took the time to explain how research is looking into different viruses that could play a role.
He wants me to come back for a second round of blood work (RF factor is what he wanted this time) and a chest x-ray to rule out endocarditis, although he said to follow up with these things with my doctor (the one that hasn't helped at all). I'm actually going to see if I can switch to him permanently at this point.
My main question is, at this point I've felt dismissed for so long, and without a etiological cause for chronic fatigue syndrome, I just feel like I'm "faking" it, like it's not real still. Right now my symptoms are so bad I can no longer exercise (I'm 26, normal weight, active before all this). I have had to call in sick two times this month just to "recover" and I am at the point where those days off do not make me feel better. Most days I go to work, come home, and will go to bed at 6 or 7pm. I sleep great but wake up incredibly sore, fatigued, and stiff. I can barely walk down the stairs in the morning. Some nights I'm so tired after work I can't even be bothered to cook dinner or order out to eat. It's really bad but yet I still feel like it must not be "real".
I feel like I'm just a complainer and this must be how everyone feels or that this new doctor is wrong and just telling me what I want to hear. It's frustrating when the blood work basically says everything is fine but I feel like my body is 90 years old. How can I prepare myself for treatment or possibly going through yet more medical rigamarole to get some answers, when there seems to be none with this disorder anyway, when it takes all my energy to get out of bed and go to work and do my job? I have absolutely no energy left, so how do I keep on going in to multiple doctors? My doctor didn't believe in chronic fatigue syndrome so I guess that left an impression on me and I feel like it's not real either. I'm embarrassed to mention chronic fatigue syndrome when family asks about how I'm doing (they have all noticed my decline) and what the doctors say.