I have a feeling this will be long, if you actually read through it, I commend you. I need to get it out...
I've been having issues for years. It started as pain, widespread throughout my body. Mostly my joints. I first went to the doctor about back pain when I was 18. He told me it was growing pains. What? I ended up having breast reduction surgery at 20. My back problems really didn't get better and my back often goes out. It feels like something slips inside my back and I can't straighten up. Or even move. It usually lasts a couple of days. Doctors keep saying it's muscular but I can feel something slide in my spine when it happens. I have a spot about mid-back on my spine that can't be touched. It doesn't hurt so much as make me feel like throwing up when someone touches it (including me).
I have pain in my neck, shoulders, back and knees constantly. I get sciatica constantly. It feels like a similar grinding or slipping in my knees and hip area as it does in my back. I can't wear anything on my feet other than my sneakers or my entire body gets thrown out of whack in a most painful way.
I have serious memory problems, both short and long-term. I often forget what I'm doing in the middle of doing things. I'm starting to forget common words from time to time. I have no memory of childhood. Vague memories of a couple of things in my teenage years but I think that's more from hearing the stories than real memory. Even in my younger adult years, memories are choppy and blur into one. It makes recounting what is going on, with dates, difficult.
I have several food allergies. I was diagnosed with IBS back around 2000, I think. At this point, I wake up with an upset stomach and every time I eat it upsets my stomach unless the food is very bland (chicken, rice, popcorn are all fine).
I saw a rheumatologist (sp?) who spent about 5 minutes with me, told me I had Fibromyalgia and sent me on my way with medication. I took it for a bit, didn't like how tired it made me and stopped it. I tried to explain to doctors back then, that I was tired all the time. They told me it was because I wasn't sleeping well at night.
I got to the point where I would go to work. Come home and sleep. Wake up for supper. Eat. Go back to sleep. Wake up for a bit. Go back to sleep and sleep through the night. All the while, I was tired ALL DAY.
Fast forward to 2007. At this point, I've returned to university but this tired feeling is crippling. It's beyond any description. I tell the campus doctor that it feels like I've been drugged. Like someone has slipped me a roofie. It is all I can do, to make it into a bed. When I sleep, I often have dreams that I can't wake up. I can see myself in my bed, exactly as I should be, but I cannot wake up. I'm very much aware that I'm asleep but can't wake up. I try to scream, something, anything, to get myself to wake up but I cannot. Sometimes it feels like someone is in the room. Once I could feel someone sitting on the bed beside me. I couldn't turn around. I couldn't move. I couldn't wake up. Yet I could feel a weight of someone directly beside me. A few times I hallucinated, seeing someone in the room. Seeing a cat jumping onto my face (that was weird). When I finally manage to truly wake up and move around, I am usually gasping. It is like I am literally locked in a struggle with sleep.
The campus doctor felt I had narcolepsy. She also felt the diagnoses of FMS was incorrect. For the first time ever, I admitted to her that I felt it was too. Something is wrong. I know that. But I don't really think FMS is correct. She sent me to a sleep specialist who agreed I had narcolepsy but needed to do a sleep test to confirm. I went for the sleep test and though I can fall asleep at the drop of a hat, could not sleep there. The wires, I was cold, I have a hospital phobia. It just wasn't happening. So she decided I did not have narcolepsy but that I do have restless leg syndrome and tried to give me a medication I refuse to take (and which causes me to have asthma attacks anyway). I don't have restless leg syndrome. I don't move at night. If I was kicking there, it was because of the wires. I slept all of 20 minutes and they couldn't do the second daytime sleep test because I didn't sleep at night. Needless to say, I was more than a little furious that she completely changed her diagnoses even though I have all these things going on.
I forgot to mention that I was also diagnosed with PCOS.
So now we're here. Anything I say gets written off as a symptom of FMS. I have been experiencing involuntary muscle jerks. If you've seen someone with cerebral palsy, it looks a bit like that. I used to work with disabled kids and that is the best comparison I can find. That started happening prior to me seeing the campus doctor. Prior to being given Modafinil (which is the only thing allowing me to function at all).
Sometimes my heart will start racing. I wore a Holter monitor for 24 hours and had one of those attacks while wearing it. My heart races. My face gets all red. I feel absolutely FINE other than that. Not anxious or nervous. They picked it up on the monitor but my medication is getting blamed. I tried to say that I've been experiencing this since my early 20s it's just gotten worse but no one seems to hear me.
From time to time, my vision will go blurry. There are no other "symptoms". I just suddenly can't see well and after 10 minutes or so it goes away. Sometimes I have difficulty talking. I stutter and stumble over words and feel like my tongue is too big for my mouth. It makes me feel stupid. I sound stupid.
Twice now, I have experienced what I can only assume is some random attack of narcolepsy. It starts with me feeling sick to my stomach. Then I am overwhelmed with exhaustion and must lay down. Once it was on the bathroom floor. Once, thankfully, on the couch. I then can no longer move. Or talk. I close my eyes but I'm awake and very much aware of my surroundings. If the house were on fire, I would burn. I absolutely cannot move. The second time it happened it felt like I had an electrical current running through my body. Like a buzzing electricity all over me. These episodes lasted around 15 minutes.
Very recently I've started losing my balance. I have foot drop and trip a lot anyway but this isn't tripping. This is me, walking and suddenly I'll fall over to one side. I've caught myself, with my hands, every time, thankfully. I've also started dropping things. I think I have them but they slip out of my hands. Keys. A can of pop. A jar of salsa (and that one was a bit amusing since the jar came open and sprayed salsa all over the kitchen).
I have had an EEG that came back normal. My doctor has written a referral to a neurologist. I am waiting to hear from them with an appointment. She said, though, "Every test we've run comes back normal." And it's true. They do. I agreed. I'm frustrated. I am starting to feel crazy. If the neurologist tells me nothing is wrong, I really don't know what I'll do.
I truly feel like, at this point, I give up. I don't know what I'm going to do. I'm turning 33. I don't want this to be my life. I want to be normal. I want to have energy. I don't want to feel sick or be in pain. I don't want to forget everything. I don't want to sound like I'm drunk when I try to talk. I have no idea how I'll work a normal job. I've got a teaching degree but there is no way I can handle the hours of teaching right now. I'm currently completing a Master's degree but I'm not sure what the point is anymore.
I guess I just really needed to get it all out. It's ok if no one replies, this was super long. I've probably forgotten things, which is part of the problem when I go see the doctor, I can never remember everything and then I feel like I'm bringing her a grocery list of complaints and it makes me feel like a hypochondriac. But I'm not inventing these things. I hate going to the doctor. I hate hospitals. I have a phobia of needles. I do not want these tests, I'm doing it because I know I need to. But I'm starting to feel like I'm coming across as crazy...
Thanks for reading if you've made it through all of this...