- CASE FILE
I am to the point I never want to hear "normal" as the results of a medical test...I want answers, I need answers.
ABOUT THIS CASE FILE
I'm 34 and my life is ruined from multiple medical issues that docs can't seem to figure out a cause to. They are all diagnoses of exclusion and almost all my tests come back as reading "within normal ranges". I was a school bus driver and I absolutely loved my job, but then I started getting really sleepy/drowsy to the point I couldn't keep my eyes open anymore so I could no longer drive for a living. I barely drive my own vehicle (I can as I don't just fall asleep without warning!)
I have extreme daytime sleepiness, I get really drowsy during the day despite "sleeping" at night. I had 2 overnight sleep studies that ruled out sleep apnea and other issues. I then had a Multiple Sleep Latency Test after the second sleep study and was diagnosed with Idiopathic Hypersomnia. I can basically sleep anywhere during the day. I try to keep a normal sleep schedule. I try not to nap, although I occiaisonaly fail. I tried Provigil, Nuvigil, and Ritalin, but all caused dizziness, and I can deal with sleepy over dizzy.
I am in constant pain. When I couldn't drive I tried working in an office, and it turned out sitting up at a desk for any period of time was excruiciating in my back/shoulder blade area. I was diagnosed with a bulging disc (c6/c7) and fibromyalgia. I couldn't do filing because looking around to see where to put a file made me dizzy. I already have random bouts of vertigo that last anywhere from a few hours to a week. I also have bouts of lightheadedness that can also last anywhere from a few hours to a couple weeks. I get dizzy and often nearly black out (basically lose vision temporarily) when I stand up too fast, and that gets 100x worse if it is hot out or I feel hot. I have been hooked up to EKGs, month long heart monitors of various types, seen cardiologists, did a tilt table test...every time I go to a new doc (and even sometimes when I got to my regular doc) they are always surprised at my high heart rate....100+ resting. But normal/low blood pressure.
As a kid I always had knee pain and was diagnoses with Osteochondritis dessicans. They removed the dead piece of bone and attempted a graft from my shin, but it failed, so they removed that piece and smoothed everything out and basically said good luck. I still get pain in that knee. It is completely random. I will be walking fine than boom....pain. I was also diagnosed with Costrochondritis as the cartiledge around my sternum gets extremely painful, and they say also my ribs which they say is the cause of the chest pain I often experience.
I have never had "normal" bowel movements. Or if I have a normal consistency bowel movement, it is followed by gassy liquid for the rest of the day. (Basically you have to fart in the toilet as there may or may not be something more than just air). I get constipated. Then when that releases it's diarrhea or loose afterwards. Colonoscopy was normal.
I get headaches many days. I was diagnosed with migraines and given Topamax. It did cut back on the number of days, but did not eliminate them completely.
My menstrual cycle is a nightmare. I had very heavy periods. I was on the pill. Currently I have a hormonal IUD. I get terrible cramps (even before the IUD). It's all over the place. Even with the IUD it can be anytime it feels. Spotting, the period itself can last 2 weeks when it feels like it. All my symptoms like the sleepiness and headaches get way worse just before. Hot and Cold flashes. Night Sweats every night, even when the thermostat is set at 55 at night.
I wake up almost every morning with a sore throat and often my nose is stuffed on one side, Both symptoms usually go away when I get up. And it's happened no matter where I sleep, which house or hotel or anywhere. Now my ears, especially the left has started bothering me. Not deep internally, but just on the very inside. I get a lot of wax buildup as well in my left ear.
I have had extensive blood work, endocrine workup (a couple years ago, but symptoms have been worsening). They say it isn't thyroid (despite family history, and they did do the more "in depth" test...but it came back "within normal limits"). Nothing seems to "trigger" symptoms besides my stupid period. I really believe that "normal" is not necessarily correct for everyone.
I also struggle with anxiety and depression, part of which I think is caused by having to deal with all of these medical issues.
I no longer get to work, I miss my job so much. I absolutely loved it. I spend my time going to doctor appointments or being in the house. I don't get to enjoy things I used to like riding a motorcycle. My heat/sun sensitivity is so bad I can't be outside during the summer without feeling awful. If I have a day where i feel better than most of my days, I do more, but then I pay for it and am wiped out by the afternoon/evening, and often the next day or so. It's awful being 34 and not being able to do much. I would love to have a life again.