Good And Bad News
The good news is I don’t have Lupus. That bad news is I don’t have Lupus. Uhm, Ari? How is that bad news too, you ask? It’s bad news because nobody seems to know what I have. While I wasn’t actually thrilled with the possibility of Lupus, I had prepared for the confirmation and was at least comforted by the fact that I could start some type of treatment plan for it. So after waiting over a month to see a rheumatologist who did a bunch more tests on me, I was quite shocked to get a message from him saying:
ALL TESTS ON HALF THE BLOOD THAT WE TOOK OUT OF YOUR BODY CAME BACK NEGATIVE FOR AN AUTOIMMUNE DISEASE. THANKS FOR PLAYING. DON’T COME BACK. HAVE A NICE DAY.
OK, I may be paraphrasing just a bit, but that was the gist of it. So back to my general practitioner I went. He listens to me tell him all about how the rheumatologist found nothing wrong but I still have searing pains all through my chest, back, sides, and abdomen. About how I have exactly zero energy level. About how I went from climbing mountains to having trouble climbing out of bed in the morning. About a brain so thick in fog that I can barely function on a normal level, much less do my job properly.
So, he listens to this diatribe and then goes, “Hmm…”, before opening a cabinet in the examination room that has a dart board on the inside of the door. Written on the board is a bunch of diagnoses in each section. He then pulls out a dart from inside his pristine white lab coat and chucks it at the board. He walks over to read the words in the section that the dart stuck in. He studies it for a minute then walks back over and says, “I think you might have Fibromyalgia brought on by Sleep Apnea since you have low energy. We should schedule you for a sleep study.”
I’m sure you know the dart board thing didn’t really happen but when he popped off with this diagnosis out of the blue, that’s exactly how it felt he’d come up with it. It just feels like he wanted to say something to get me out of there and out of his hair. I mean, how do you go from having tests come back that say there is internal swelling of my organs to a disease that can’t even be diagnosed through testing, brought on by a sleep disorder? It just feels like taking a shot in the dark. Of course, I can’t even get in for a consult for sleep study for another month. And what do I do in the mean time? Take some more ibuprofen was his response.
I know some of you are going to suggest I go see another doctor. It’s already been suggested to me by others. My problem is that with my social anxiety it was hard enough to get the ball rolling with this doctor. The thought of starting over at square one with another doctor is terrifying. I’ve been to doctors and labs more times in the last five months than I’ve been in the last five years. It’s mentally exhausting.
Anyway, I figured I would drop a post just in case anybody was wondering if I was still alive. Sorry about all the gloom, doom, and whining.
12 thoughts on “Good And Bad News”
Oh man. Freakin’ doctors. You have my sympathy! And what is it with sleep studies all of a sudden? I started to snore (daintily) – annoying but not shocking, but suddenly my doctor wants me to take a sleep study. To determine what, exactly? Besides, I take some Xanax to get me to sleep, and I suspect they wouldn’t allow that in the study. So there would be no sleeping done at all, and therefore, nothing to study. Hope you start to feel better soon, despite medical intervention. From not believing in Fibromyalgia for decades, now it’s the ‘go to’ diagnosis when they can’t figure out what else is wrong!
I’m not looking forward to trying to sleep with people watching me. Copious amounts of alcohol might help but I have a feeling they won’t let me tote a six pack along for the study either. I know there are people that have Fibromyalgia and it’s legit, but you are right, the doctors seem to jump on that too quickly. At least in my case I would hope they would exhaust all other possibilities before going to that. Guess we’ll see what happenes.
Saying “Go see another doctor” would be an insult to your intelligence so I won’t. And I was going to say “Get well soon” but then I realized that sounds like a command too. Seriously, every time someone says “Get well soon” you should say “I would if I could!” or a snappy “Thanks, but I enjoy feeling miserable!”
So I hope you find a way out of the gloom and doom and I wish I could offer more than just sympathetic eyeballs, but I am glad you’re at least still plugging away.
Getting a chuckle out of your comments always makes me feel better. Thanks Chris.
I can relate to this so much, Ari, so I totally understand what you are going through. My stomach was swollen to the moon, and I had terrible pains in my abdomen, so I went to see a dr. He sent me for an ultrasound, and when the results came back he said they were normal and told me that I had irritable bowel syndrome – even though NOT ONCE had I mentioned to him that I was shitting all the time because I WASN’T. A year later, I went to a naturopath, and he looked at my belly and said, Tanya, that is not bloating, that is swelling from something inside you. He sent a requisition for another ultrasound and inside of me was a buffet of polyps, cysts, and fibroids. My surgeon found a fibroid inside of me the size of a baseball. So, back to that asshole doctor who said my problem was having the shits – suck rocks, asshole!!! Your frustration is so justified; it is unbelievable that some doctors just guess if they can’t find an answer right away. I know it is hard for you, but finding someone else did help me immensely and it could you as well. You deserve care that will help you feel well! Good luck, my friend, and thank you for the update! Big hug.
Yikes! Going through that, you know exactly how I feel. So frustrating! I’m seeing another specialist next week. Maybe I’ll get some answers.
Ummmm, if I have searing pains anywhere I am going to a doctor and say “fix me!”. If they can’t I’m going somewhere else. Go see another doctor. Sowwy.
I had one doctor tell me my neck was swollen because I was going through a divorce. I shit you not. A year later, another doctor took out my thyroid. One doctor told me 100% that I was not having twins. A week later another doctor confirmed that I was. See another doctor. Don’t hate me 🙂 I need more hiking stories.
Sorry for just replying. Lately my spam folder is flagging every comment for some reason. I’m probably going to have to see another doctor soon. I’m certainly not getting any answers and I won’t be having any new hiking stories since I can hardly manage to hike down the front porch stairs.
Arionis, I’m sorry I’m just seeing this. WP is being an asshole and not showing me your posts. I hope you have had some resolution in the past few weeks. Pain is so debilitating and not having a plan of action makes it worse. Take care of yourself. Get plenty of wifey and doggy snuggles and muster the energy to get yourself to someone who is willing to spend the time understanding your social anxiety and your pain. Thinking of you.
Thanks for checking in. Sadly, I have not had any resolution. Just as I feared, the sleep doctor, while telling me that I might well have sleep apnea and has set up a sleep study for me, right out told me he didn’t think it had anything to do with my pain, brain fog, or total lack of energy. I’m going back to my general practitioner tomorrow for a little heart to heart. As much as it would mentally pain me to have to start all over again, if I don’t get the answers I want I’ll be forced to find another doctor. The lack of energy and brain fog is so bad now that I can’t even write anymore. I struggle just to make a coherent comment on some of my favorite blogs, your’s included. Sorry for all the gloom and doom. You caught me on a particularly poor me day. However, your comment is much appreciated and helps. I hope you are doing well and chugging along on your 50 to 50 challenge. I’ll stop by soon to see how that is going.
My Mommy had Chronic Fatigue Syndrome for 40-plus years, the bulk of those undiagnosed (since there was no such thing, at the time she “came down” with it – it was just all in her head). Yeah, brain fog is definitely in your head, amiright? The symptoms you’re describing sound an awful lot like CFS. There are something like 11 symptoms that you have at least 8 of, in order to reach a diagnosis. And sometimes, you’ll trade out one (say, sleep deficit) for another new one (sleeping all the time without feeling rested), so you always “carry” 8 of the 11 symptoms.
Hopefully, your new doc can either diagnose or rule out CFS. While debilitating, it IS something that can be treated and lived with. Good luck!
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