Last week – June 2020 – I went back to my PCP for my annual blood work and to stomp my foot and cry to get this fixed. I want my life back. I want to have the energy to walk the dog, do the dishes, sew, even to do laundry!
They took my blood, did the standard workup. My PCP sometimes gets caught up with patients so sometimes he takes a while to get to people. I never minded because I could hear how he was laughing with the kid in the next room and that is what made me think he is such a great doctor. After the nurse/medical assistant did their thing, I laid down on the table for who knows how much time while waiting for the doctor. I was extremely close to falling asleep when he entered the room.
He was nice and brought up COVID, asked how I was dealing with it, etc. I mentioned that I was still out of work, but managing other than that. I was doing side jobs and making masks for friends and family to stay busy. Then I brought up how extreme my fatigue has been. I mentioned that I could easily sleep 20+ hours a day. I would literally fall asleep on my sewing machine, at my desk, at the grocery store… apparently, the last example got his attention.
He asked, “20 hours a day? That can’t be right.” I explained in further detail how I struggled to keep my eyes open while standing and doing the dishes, or waiting for the cashier at the store, or some points even while driving. No matter how much caffeine I take and even with my new med – Amphetamine salts – I would still sleep the entire day. I explained that I would drink an energy drink, take my med, and then take a nap without any issues. I told him I almost fell asleep here and now.
We talked for a bit, he seemed baffled by my fatigue/sleepiness. At this point, he actually asked me what I thought it might be because sometimes people try to figure it out on their own. I explained that I thought the most likely culprit that I came across so far that explains everything is Hypersomnia or some form of narcolepsy. My PCP also suggested it might be Sleep Apnea, but again, I dismissed it immediately because I don’t snore, struggle to breathe, wake up throughout the night, etc.
My PCP stated that hypersomnia was a “description”, not a diagnosis. Which, I knew, with all of the medical journals I had been reading and the classes that I took. However, I also don’t fit into the narcolepsy criteria because I don’t just suddenly fall asleep due to a trigger.
I brought up that maybe it was a problem with my hormones, or my hormones are listed as “normal” on the chart but may not be “normal” for me. In my research, I found that this could also be a very real thing and all it would really take is some extra blood tests. My PCP just nodded and “hmmm” ed.
He stated he would take a look at my bloodwork when it came back and if everything comes back fine, he would refer me to a sleep clinic. I thought as I was leaving the office, “at least we are finally exploring other options. Hopefully, my bloodwork will give SOME kind of indication.” A few days later, I got an email with my blood results that just said “good”. I followed up with a respectful response similar to, “So, what does this mean? What are the next steps for my fatigue?” A week later and still have not received a response.
Earlier this week I had my annual exam with my OBGYN whom I have been seeing since I was 16. I thought at least maybe she could rule out or test the hormone issues or tell me if my birth control or something might be a clue. I used the same description as I did with my PCP since that seemed to work with him, to describe my problem with my OB. She seemed just as baffled. She seemed equally surprised. To drive my point home, and because I was so desperate for any doctor to take me seriously, mid-exam I explained that I could easily fall asleep right here, right now. She looked at me with both eyebrows raised and she said, “Really? Noooo….” I nodded enthusiastically. At that point, she really heard me.
We started bouncing ideas off of each other, but she stated that it wasn’t her area of expertise and she really didn’t have a clue. I asked about my birth control, my hormones if anything like that could cause it and she said very unlikely and she had never seen anything like that before. But, she understood my struggle and gave me a referral for additional tests.
Her thoughts were similar to mine: an autoimmune disorder like lupus? Hormone levels? She seemed slightly surprised that I haven’t had tests like that run yet. So she gave me a list of tests and basically and open referral for me to go anywhere possible to get them done (insurance depending). I left that office feeling slightly more optimistic because I actually had a referral for tests in hand and SOMEONE was doing SOMETHING.