Do I Really Need Another Diagnosis?
Wondering why I’m looking for a new condition when my plate’s already full of them
In this week’s edition of Melissa’s Medical Spicy Disaster I get to decide whether or not I really need a new medical diagnosis, and if it‘s worth fighting for.
Oh I hooked you, didn’t I? You want to know what I’m talking about, don’t you?
Well, let me tell you!
If you’ve ever read any of my other newsletters, or notes, or basically anything, you know that I always talk about being tired. Always. Like the tiredness doesn’t go away unless I hop myself up on caffeine. The caffeine works, but the my hearts beating a little out of whack and that’s a whole other set of problems.
So, since appointment season is upon us, I’ve started to bring up the fact that I’m tired. Again. For the billionth (trillionth? Zillionth?) time. All my lab work looks fine, all the tests are fine, yet I feel like I could sleep a whole day and still not get any more awake. It’s like there’s this wall that I hit and it knocks me out every single time.
I had my hepatology appointment this past week - it’s the liver doctor, if you didn’t know. I didn’t know until I went that they were called heptalogists, don’t worry. I went to my hepatology appointment, found out that everything was status quo (yay for stability!) , took a deep breath, and asked the doctor if she thought I could have chronic fatigue syndrome. (Well technically it was nurse practitioner because my doctor had to cancel but…well…semantics) Now I know that you’re thinking: She’s a liver doctor, what would see know about chronic fatigue? I wasn’t looking for a definite answer, but I was looking for an opinion to see if I should pursue this possibility, or if I was only going to let myself down in the end.
Guys, I got the most obvious, most politically correct answer I could’ve, and I don’t think I’m even mad about it.
She said that it’s a possibility that I could have it - she suggested if I felt strongly about my symptoms then I would go to a rheumatologist because that doctor could rule out (or in) CFS as well as anything from other immune issues or osteoporosis arthritis and all that fun stuff.
Then she added that my own medical condition could be the culprit, or at least part of the culprit that was making me feel like I was walking around in cement shoes. The thing that was making me feel like I got hit by a bus after a day of too much activity or, God forbid, a vacation that didn’t involve me sitting on my booty the whole time.
So…basically…it could be Chronic Fatigue Syndrome. And it could be my own body screwing me over yet again.
In short, I’m right back to where I started.
Why, you ask, is this diagnosis so important? It’s not like it’s going to change anything - from the research I did, there’s no “fix” for CFS; no magical pill that would make me feel better.
And do I really need as other medical condition to add to the list? Isn’t the one I have (and the subsequent ones that developed because of it) enough? What would I do with this new found information, assuming I would have new found information.
Great questions! The answer is….I don’t know. I don’t know what I would do because knowing wouldn’t change anything. Except maybe I would feel like I finally have an answer. A reason for why I feel so crappy despite being “healthy” (for, you know, someone with a chronic condition).
But couldn’t I be okay with the idea that it was the condition I have? That it’s not some type of mystery and instead just my own body telling me that it’s had enough? Wouldn’t it be easier like that?
Possibly. Probably. (Definitely.)
I don’t know why I need this justification except that it would make me feel better. Like there was something else going on. It would make me feel like I could get worse even if everything stayed the same. It wouldn’t make me feel like it was all downhill from here (and not in a good way)
It would make me feel like my body hasn’t failed me yet again.
In reality, I’m not going to the rheumatologist. I’m not going to have the tests to rule out (or in) any other medical conditions. Mostly because I don’t have the energy too. (If that’s not irony, I’m not sure what is) Partially because it won’t change anything. Definitely because I don’t want another doctor to follow up with and another condition to keep my eye out for. I want to live my life as much as I can; I don’t need to be bogged down by yet another appointment or another slew of tests that are probably going to tell me the same thing: I’m chronically altered and there’s nothing I can do about it.
I think I’m looking for that elusive “fix.” You know, the pill to make everything better, even though I know there’s no such thing. I think I’m looking for something that isn’t so hard anymore.
Maybe I’m being a whiny cry baby (I kind of am, I know, don’t worry.)
The additional condition will have to wait another day (or month, or year or, you know, lifetime.) I’ll tuck it right next to that other condition I may or may not have, and have yet to find out. They can be friends.
And since my exhaustion won’t go away, I’ll just have to make concessions…back to two cups of coffee a day!
(Hey, look at that! There’s my silver lining! 😁😁)