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Chronic Fatigue Syndrome
About Me
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About Me

Me and Pumpkin, February 2001
Me and Pumpkin, February 2001

My name is Jackie and I'm 15 years old. I live in Roswell, Georgia, part of huge Metropolitan Atlanta. I've been sick for over three and a half years now.

 

How it started

In early September of 2002, I became sick with Mononucleosis. School had only started 4 weeks before that. I was on Homebound for a little while but the people at my school were upset, saying Mono didn't last that long, and I was fine. One lady was convinced I was depressed and that I had school-phobia. As part of the ruling-out process you have to go through to be diagnosed with CFS, I went to a psychiatrist. The psychiatrist said I was a "very well adjusted child". I was still sleeping 18-22 hours a day, and the rest of the time was spent in bed. The school system was still upset and stopped my Homebound. They were going to have a social worker visit my house, because they thought I was being neglected! I was then taken out of school. That just went too far. Shortly after that marked my sixth month of being sick. I met 7 of the 8 criteria to be diagnosed with this illness, and since we ruled out all other possibilities, I was diagnosed with Chronic Fatigue Syndrome.

 

My symptoms

I have some good days where I'm awake over 12 hours, but they're usually followed by days where I sleep over 18 hours, and am sometimes too tired to even hold my head up or pick up a piece of bread. Even on my so-called "good days", or when I do something like walk around a mall or roller blade, I don't feel great. I still feel bad but it's worth crashing the next few days to get out and do something active. Even when my fatigue isn't overwhelming, I have bad headaches that never seem to go away, with lots of pressure behind my eyes. I get cold extremities (blood stops flowing to my hands or feet), I have un-refreshing sleep, trouble concentrating and focusing, trouble remembering things, muscle spasms, strep-like sore throat, and I am usually physically tired but mentally alert. I also get irritable. Muscle spasms have been my worse symptom, besides the fatigue, and the most painful.

 

Dr. Lapp

In early September of this year my parents took me to Charlotte, North Carolina, to see CFS and FMS specialist, Dr. Lapp. The week before I had blood work done and another electrocardiogram. The EKG (electrocardiogram) showed that I have tackycardia, my heart rate was over 100. Dr. Lapp thought it was caused by the medicine I was taking to help me sleep and get rid of my headaches, called Nortripyline, because before I started taking it my heart rate was normal. He gave me some other medications to try and suggested other things that might help some of my symptoms. He was very easy to talk to! He doesnt say hes curing anyone, because there is no cure, he just treats the symptoms. I also had a tilt table test. It was interesting, I was afraid that I would get really sick. I started out laying on my back and after watching my blood pressure and heart rhythm, they elevated me to an almost standing position and continued to monitor it. The whole thing only took about 30 minutes. Although I did show some sign of orthostatic intolerance, it showed that I dont have vertigo.

It has been very frustrating for me and my parents. Many people don't believe there's anything wrong with me, since all my lab tests and x-rays are normal. It was wonderful to get confirmation of my diagnosis from Dr. Lapp, who has seen thousands of CFS and FMS sufferers. I am glad that the CDC is finally starting to recognize CFS and FMS as real illnesses. If doctors don't believe in them, ask them why the CDC says they're real. I think CFS has made me more understanding, caring, and thoughtful. I think everything happens for a reason. Maybe you'll never figure it out, but it does. I would really like to help spread awareness about CFS/FMS and all other invisible illnesses. I really hate to think that many, many people with these illnesses have to go through all the stress and frustration when everyone thinks that they're just crazy or making it up for attention. Some of my relatives have a hard time understanding CFS, even though I know they just want me to get better quickly. CFS and FMS are real, whether people want to believe it or not. A lot of doctors might tell people it's all in their head, but we are sick.

 

I need friends!

I would really love to hear from anyone out there with CFS/FMS, or any other invisible illnesses! I would love to hear from people that don't have them, too! The Internet has been my gateway to the world. All my friends are online. I have my own computer in my room, and since it doesn't require much physical activity, it has helped everything so much. If you're stuck in a body that doesn't function really well, you might as well be happy! You can't try to fight something when you're stressed or depressed. Even if I have a debilitating disease, that doesn't mean I'm just going to stop living. One of the things I have really enjoyed is being a part of the Northwest Atlanta CFS/FMS Support Group. I love going. It's really great to have people that know what you're going through. If you're interested in talking to me or if you have any questions or comments, please E-mail me! :)