I hate being chroncially ill. The narcolepsy especially sucks at the moment.

[kyethra 0]

Ugh. So I used to be a healthy young women. Then when I was 20 I got sick. And I never got better. Nope. I then developed narcolepsy around the time I turned 21, in addition to the fibromyalgia I developed from the long illness I had. And mostly I have made my peace with that. But some days it really gets me.

Cause it sucks.

It seems like if I just want to do stuff I have to do so little... Cause if I just too much then I'm going to go to bed with a fever and sore throat and achey joints and be super tired for days.

And of course I am sleepy. And my sleep at night... According to the sleep study I have an arrousal a minute. But we have to rule out one more respiratory thing so its going to be at least a month probably two before I can try xyrem, which might help me stay awake during the day better.

I feel like I can do so little. And I am at an age where I should do so much. But it hurts. All the time. And I'm tired all the time. And I hate it.

Dec 8 2003 I get this fever. I go to the ER cause it keeps going up. Then I go home cause they say to rest because they have no clue. Then for about three days I'm in shock and shivvering with the fever. Then it breaks. Then I get covered with this rash all over my body. The rash lasts about a day and then it goes away. And no one has any clue what I had. Sounds like roseola people say except I already had that when I was a baby. But everything about it sounds exactly like roseola.So that should be the end of it except after that damn virus, whatever it was, I'm not the same. I keep getting sick. I always have a cold. I feel run down. I go to my doctor about six weeks later and tell him that, say something isn't right. He says take more Vitamin C. It will go away. I say I do take Vitamin C. He says I'll be fine.

He was wrong. Less than a month after that-- and my health hadn't started to improve either-- I get sicker. I start having asthma attacks because my GERD has gotten bad all of a sudden for no reason. And it keeps getting worse. Then I start having diarrhea, nausea, vommitting. Then the abdominal pain starts. Go see my doctor a couple of times with all of this. He keeps telling me it will go away. Its IBS he says, but it will pass. He gives me pills that don't help. Then when I go back because the pain just keeps getting worse and I can't function with it and the vommitting he refuses to give me a refferal to a gastroenterologist. Instead he just gives me pain pills. And every time I go back to see him, sicker and sicker (my hair started falling out) he just gives me more pain pills, stronger ones because the pain keeps getting worse.

In the meantime I've had to drop most of my classes and the one I did stay one I rarely can go to- I just email late assignments to my incredibly understanding professor who is also getting irritated but when I explain to him the doctors don't know he realises I'm sick sick and not just out with the flu. I have to quit my job. I spend a lot of time on my boyfriend's couch. He tries to feed me. I try to keep it down. My roomates do the same when I am home.

I go to the ER a few times for the pain. They X ray me and because the pain is on the left and I convince the eager residents that no, it isn't reffered pain they let me keep my appendix. The x rays are normal. They refer me to a gastro. He runs all the tests he can. I get a colonoscopy. Nothing.

My boyfriend suggests that maybe its gynecological, this pain. Its in the right place to be gynecological. So I ask one of the random doctors. She likes the idea- they schedule a gynecological exam for me. The gynecologist feels something. Its probably a cyst, so an ultrasound is scheduled. On the ultrasound there is a large dark mass. Probably a cyst. But they want to make sure it isn't a tumor. So more tests are scheduled...

Meanwhile it all just gets worse. I can't even bathe myself properly anymore. Doctors mention that someone as sick as I am should be in the hosptial. But no one actually wants to be the one to take the responsibility to admit me. The cyst ruptures. Worst pain ever. And the pain doesn't go away. Even after weeks. The MRI is normal. So is the CAT scan. Then the next ultrasound. Then a gynecologist wants to cut me open because she thinks I have endometriosis. When its not there she tells me its all in my head. The gastro won't see me anymore. Its not his problem he says.

So I go up to mayo. The girl on the phone gets me into gynecology quick, without a refferal too, when I explain my doctors tell me its not their responsibility. The doctors there are great. I hear the gynecologist tell the medical student that is shadowing him "it can't be psychological. She has this test positive. Its her abdominal wall." He tells me that its not in my head, its in the abdomen. That is was a cyst that ruptered (no one even confirmed it was a cyst before). He sends me to gastroenterology to take care of because its their area. But it was the cyst that messed things up. The Gastros explain that when the cyst ruptered (it was big to begin with and it got to grow a while) it irritated a nerve ending. I have an entrapped nerve ending in my abomdinal wall causing the incredible pain. I need to have injections in it. They also figure out that my stomach went a little crazy too and even on my prevacid it was producing 60% more acid than was normal. I was also anemic. They adjust my meds and find me a local pain clinic back home.

The injections help, but they stop helping. I ask the place that does them if they shouldn't also inject a steroid with the anasthetic like the protocol says. They say no. They stop treating me. No one else will treat this. They tell me its all in my head. So I go back to Mayo pain clinic. They do the injections correctly. They put me in physical therapy because that muscle no longer works properly.

I don't get better like I am supposed to. I'm still too weak and can't seem to get stronger. Other problems persist. After lots of doctors and tests they figure I either have CFS and fibromyalgia or rheumatoid arthiritus. Eventually my sed rate returns to normal. Its fibrmyalgia. I'm in physical therapy nearly a year just to be able to start to use gyms again.

The narcolepsy starts to develope a few months after I get dx with the fibro. I wake up but I can't stay awake. I keep falling asleep in my classes. My insurance won't cover sleep studies so I don't find out its narcolepsy until a couple of years later. I was just the right age for it to develope.

Sometimes it seems unfair. I already had a rare learning disability. That was hard enough. I was overweight--- and after all this more just piled on. I just hope that the band gives me the tools I need to lose the weight. And my doctors find treatments for the fatigue that work. I want more of my life back.

Sorry for the rant. Just having a bad week. Needed to get if off my chest.

[Ariel 1]

Oh hun I am so sorry to read about your troubles. I can relate. From the age of 13-17 i was chronically ill, and alwyas in pain. i went from doctor to doctor and none of them had a clue. I had surgery and more tests than i even knew existed. Then one day i was fine. The only explanation my doctors could come up with is that during puberty the hormones caused my body to basically go nuts. Hopefully they will figure out what is wrong or even better you wake up one day fine. PM if you ever want to talk.

[Kat817 19]

Kyethra, I am so sorry you are having to go through all of this! My Mom has fibromyalgia, and my neightbor has a worse case, called polymylagia. They both have good times and bad times. I wish I had a magic answer for you. If you have one near by possibly a teaching hospital ER would give you better results than a standard non teaching hospital. My Uncle is an MD., and he suggested that to us with Mom, to go to the University Hospital---they are also usually county supported, so cannot turn you away due to finances.

I will say a prayer for you to find peace from the pain, and that you receive answers---I hope you like Ariel, wake up soon, free from pain! How wonderful that would be!!!

Good Luck!

Kat

[kyethra 0]

I have a pretty decent team of physicians-- I should go see my primary doctor and tell her its bad now (an SI problem is acting up). And I finally found a good neurologist for the narcolepsy!

I'm just going through a flair-up this winter, and it gets me frustrated and whiney.

Its also hard on my husband, and I feel bad for him. One thing I might try is accupuncture. I hear it helps and I think our flex spending account might cover it. And maybe massage-- the community college offers student massages at only ten dollars a pop!

I think spring will help. I'll be banded in march and after I heal from that I'll have to eat healthier at least

[Kat817 19]

For sure try the alternative treatments out!!! My Mom has a massage every 2 weeks, and swears by them. She is such believer, she now has that as her stand by gift to all of us----massage gift certificates!!! I'm not complaining!!!

I too have heard positive things concerning acupuncture. A friend did it for long term sinus issues, and she said it helped way more than meds.

I hope Spring brings you all good things!!! I cannot wait either---I want to be outside in the sun...

Hurry Up Summer!!!

Kat