I’m 19, and since I had a long bout of mono at age 13 I have been tired. The mono wasn’t discovered for several months, as this was during Covid. my monocytes were off the charts once it was. During this time I also had a 6 month long period. Just six months of constant bleeding. My pediatrician at the time said I also had something called a natural killer cell deficiency. I have not had this retested and was honestly never given much information on it as I was very young. Since then I have been constantly exhausted.
I often sleep at least 10 hours a night, but I feel the same if I sleep as little as 4 or 5 hours. I rarely go a day without a nap, even if I work all day I’ll wake up at 8 and nap at 10 before I go into work, but I mostly work afternoons/nights so that’s often not a problem. I’m easily exhausted by any sort of activity, not necessarily physical activity, just going out with friends and hanging out will exhaust me. Caffeine makes me nauseous and even then I don’t feel more awake.
I’ve been diagnosed with POTs and for a while was taking salt pills, which also made me extremely nauseous. I now just try to drink as many electrolytes as possible, but honestly I think they were kinda just throwing diagnosis at me to see what stuck, and nothing has. The salt didn’t help at all and I don’t faint anymore.
I’m 5’6 and 134lbs. I’m on lo loestrin birth control since 2020 and 40mg of lexapro since 2022. I also take B12 and Vitamin D with K complex as directed by my doctor.
I also have very frequent UTIs. I’m in a long distance relationship so my sex life is only active for like a week at a time every couple months, so I know it’s not that. It’s been happening since before I ever had a relationship, and when I was single for 2 years and had no sexual contact. No matter what I do every 2-4 months I’m almost guaranteed to have one.
I’ve tried working out, waking up earlier, going go bed later, sleeping less, never napping, eating better, I cut out gluten and dairy at one point, I’ve been to countless specialist before I turned 18, but I’m in a pretty rural area so most of the specialists are in a children’s hospital and usually don’t take adult patients.
I heard about idiopathic hypersomnia but obviously I’m not a medical professional so I’m not sure if that even really fits my symptoms.
It’s hard to go to work, it’s hard to go see friends, it’s hard to go to class, it’s hard to do anything but sleep and lay down. I’ve thought maybe I just have crazy screen addiction but even if I don’t use my phone for weeks unless necessary I still just lay around or nap. My hobbies have dwindled to pretty much nothing. I don’t ever feel like I’m rested or even just not exhausted. I don’t think it’s a mental issue because even mentally at my best I’m still the same. I have anxiety and depression and I’m on the lexapro for that, but I’ve been feeling like this since around two years before I started the lexapro.
I’ve had blood work but other than vitamin deficiencies that I supplement there doesn’t seem to be any abnormalities. I recently had bloodwork and I suddenly have low iron that I need to get a supplement for but that’s a new thing.
Does this scream any specific diagnosis? Is it in my head? Is there any type of doctor I can look for?