Tuesday, May 17, 2011

History of my illness pt 1, before fibromyalgia diagnosis. Sorry if it's too long!

I'm not quite sure when it really began, why but it all seemed to come together gradually then hit me like a brick wall!
To go way back, I developed digestive system problems at age 15 due to stress . I was later diagnosed with IBS (another disorder that is just a name for a bunch of symptoms they cannot  or don't want to understand causes for) I suffered on and off through the years with the symptoms of this condition. If you ask me, my digestive system is the main culprit for all my later disorders.
Then  17 years ago, right before I got married I got this odd flu like thing that came with a fever and lasted a while. I went to the doctor and she said it was something that seemed like strep but wasn't strep. I started feeling tired. I was 25. The fatigue came and went.
That same year after the wedding, I got accidentally pregnant.  We had only been married 2 months and I was still in school. We weren't ready for kids yet. So I got an abortion. After that I started having pelvic pain.  The ob/gyn  'tried' to do a laparoscopy but said she couldn't get in through the navel because of adhesions! Never figured out the cause of any of that.
Age 26 I got pregnant (this time on purpose) The pregnancy was terrible. I developed a bacterial infection in my stomach that went undiagnosed for 4 months until I changed my gastroenterologist.  I went through 4 months of misery and rushes to the er and lost 10 lbs until a new gastro did  a sedated endoscopy and biopsy and found H.Pylori. A round of antibiotics and I felt better and was able to eat again. Unfortunately 2 months later I developed severe sciatica down both legs! I didn't know back then that something wasn't right in my body. I felt more wobbly than most pregnant women. During my last trimester, I felt like my legs were coming unhinged from my body.  Much later I found out that fibromyalgia sufferers get overly loose when pregnant.
During delivery, I was given an epidural early. Hours later, I wasn't dilating even with Pitocin.
Anyway, just as the doc came to say it was too late and I had to have a c-section, I had dilated but she said I had too much of the epidural meds and when it came to pushing, it was turned off!!! As soon as my daughter was born (healthy as soon as they got her breathing) I began to shake with an unbelievable post epidural headache. These headaches came and went for the next month. The lower back pain never went away.
At age 29 we decided (bad decision) to move from Menlo Park, where I grew up to Southern California (Orange County) to get more bang for our buck. The move was extremely stressful for many reasons that I won't get into. Once we bought a home down there (my husband didn't move his business down for another month or two) I set on  hiring painters to repaint the whole house and recarpet the entire upstairs (I had no idea what a health hazard new carpets were.)
As soon as my husband moved down, we dropped everything and went overseas to visit my husband's family (meeting most of them for the first time) another stressful event. Every time I went to that country, I would get the worse food poisoning. No one else had this problem.  So a doctor I went to overseas gave me amitriptyline (Elavil) for intestinal spasms. I didn't take it there but took it a few days after I got back home because I wasn't feeling too well.
  I don't know if it was just the amitriptyline, but I think it was  a combination of that, the fresh paint and carpet, the stress from moving and then spending 2.5 stressful months with the in-laws plus whatever was going on inside my body already that triggered it all. Unfortunately, I didn't know any of this back then (11.5 years ago.) Back then, I knew nothing about health I know now except for some stomach remedies. I trusted doctors and did not rebel against their God complexes. Anyway, I took the Elavil and woke up early next morning feeling like I was having a heart attack. My heart was racing, I felt I couldn't breathe, I was nauseous etc... My husband took me to this new primary care doctor I had signed up for (I had never met her 'til that day)
This woman took one look at me and without any tests or anything, she told me I had Panic Disorder!!!!! She told me she had it when she was in med school and this was exactly how she felt (projecting is what she was doing, something doctors are strictly not supposed to do.) I had no idea what that was back then but I tried to tell her that  I didn't feel like I was panicked  or anything like that. But she waved aside what I had to say brought me an armload of Zoloft samples, told me to start taking them and that I would feel better in several weeks!!!!!!
Naive as my husband and I were back then, I went home and started the Zoloft. I was in the ER the next day feeling as if I was dying! This is when the vicious cycle began. With one very very bad doctor who truly deserves to have her licence taken away (to this day, I regret not confronting her.) My trip through hell began. I kept going back to this horrible doctor and making her give me all sorts of blood tests (which were and still are always normal.) Luckily I had a PPO back then so I didn't need her referral to go to any specialists. So I went to every one I could find. Unfortunately, they all took one look at the stupid primary dr.'s notes and once they saw the idiotic diagnosis "panic disorder" they would look at me like I was some dumb hypochondriac and not take me seriously.  They  didn't want to listen to a thing I had to say even though I told them that I didn't have any of the psychological feelings that a panic disorder patient did. The only thing that was depressing me was the constant illness and not knowing what was wrong with me.  I only met 2 intelligent doctors. One was a neurologist that did every test on me including a spinal tap (which gave me horrible headaches for 2 months), Nerve Conduction Studies , and the worst most painful one, needle EMG  where a thin long needle is pushed into different muscles and electrical shocks are given. My husband had to leave the room when I was going through this because he couldn't handle watching it!  All the tests were normal. She told me she didn't think I had panic disorder either but something else.  I told the idiot pcp , she  unprofessionally called the neurologist a Nazi! The other only intelligent specialist  I went to was an immunologist, who I wish so much now I had paid more attention to and gone back to. He did some blood tests and told me that I did NOT have panic disorder but high titers in cytomegalovirus epstein barr virus . This immunologist told me nearly 12 years ago that I had Chronic Fatigue Syndrome.!!
The idiot pcp said that he was a foolish old man who didn't know what he was talking about and that I had to stop looking for different answers and accept I had panic disorder and take the drugs!!! I was put on one SSRI anti depressant after another. There was one by the name of Remeron that was the worst. It made me hallucinate, it made sounds and lights distorted. It's hard to explain how horrible it was.  I was in and out of the ER about 2 times a week. Unlike Marin County, where I live now, the doctors in Laguna Hills were not that great and the ER even worse. Every time my poor husband drove me there and they wheel chaired me to the bed (I couldn't walk, I was soooo sooo sick) I heard them loudly making fun of me that "she's back.... give her her shot of valium and send her home...snicker snicker." I went down to 96 lbs, I couldn't eat, I couldn't sleep, I had constant diarrhea, heart palpitations, feeling that my skin was coming off, muscle pains, headaches, and so so much more.  I had no idea that the antidepressants were doing this to me. Slowly poisoning me to death. It got to a point where my husband told the staff in the ER that they had to admit me and do some  other testing.  My body was failing yet my blood tests (at least the basic ones they did) all were normal.  Someone came to visit me in the hospital and asked me all sorts of mental health questions. One question was, 'How are you feeling?' my answer was immediate 'I feel like I am dying.'   I later got a copy of that report. They had left out one crucial word in that sentence, changing the meaning from me feeling so sick that I felt I was going to die to me being suicidal! The report said 'Patient feels like dying'  I said "feel like I AM dying"  not 'feel like dying!!!"  Big difference. I was now seeing a psychiatrist recommended by the idiot doctor, he was basically a drug pimp who thought I was suicidal!!!.  My idiot pcp told me she wanted to admit me into the mental hospital where she worked with many mental patients. By then she had semi brainwashed and worn me down into thinking maybe she was right and I was losing my mind and had to accept it.  Thank God for 2 things or else I probably would not be alive right now. One, the mental hospital didn't take my insurance and two, my father insisted I did not have a mental health problem and that I HAD to change my doctor! I listened to him, bless his heart.
After 6 months of this torture, I finally found a new doctor. One that was a pcp but was also open to complimentary medicine. He didn't figure out what was wrong with me but told me that had I stayed with that doctor and kept taking all the meds she and her cohorts were dishing out to me, I would  have died soon. I tried so many other things too. I tried everything anyone recommended. I had this woman come to our house that cleansed energy. She was a joke. She made me actually feel worse because she kept waving her hands around me and then spraying her hand with alcohol so her hand wouldn't absorb the bad energy :-P... I was desperate so I tried all suggestions. I went to a hypnotherapist. I was so ill that he couldn't get me calm enough to try to hypnotize me. He gave up after a half an hour. I went to a naturopathic doctor. He said he had never seen anyone like me and didn't know what to make of me. You have to understand that back then, my symptoms were so severe, they were off the charts. I could barely sit still in a chair, I was so sick.
Then there was Sanoviv. But I will stop here and continue this long story in my next post.
It's 4:40 am and I should get some sleep.

(next: Sanoviv, our move to Marin County, and my diagnosis)

1 comment:

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