Katie’s FM Experience

Katie’s FM History

Katie’s father, Wayne, was diagnosed with leukemia in November 1997. He had just separated from his wife at that time, so he was also going through a divorce. Katie suddenly lost contact with her stepsisters and stepmother as well as dealing with her father’s serious illness and repeated hospitalizations. Wayne died in November 1999.

Katie had increasing problems with general “achiness,” stomach problems, and lack of restful sleep beginning in 1998. By 1999/2000, she was having a lot of trouble getting up for school each morning, leading to poor attendance. She began catching every bug that went around the school, as well, after having had an excellent immune system earlier in her life, and she couldn’t seem to shake one infection before the next hit. Missing school and the resultant make-up work caused more stress. Her pediatrician and other specialists ruled out many conditions. She was finally referred to a pediatric rheumatologist, who diagnosed her as having fibromyalgia and Raynaud’s Phenomenon.

As soon as Katie was diagnosed, we began figuring out how best to treat her symptoms. For her, movement is key. She’s been dancing since she was about 3 years old, but we’ve found that about three classes a week are best for her, rather than the one she used to take. She also takes martial arts and is involved in a very active Girl Scout troop. We improved her sleeping environment and began treating her allergies much more aggressively. We’ve never found pain medications that she can tolerate well that also seem to help much on a regular basis, but she does take medications for breakthrough pain. She’s had two sleep studies, which identified an underlying sleep disorder, so she is also treated for that.

Katie is homeschooled, partially so that she can sleep as long as she needs to sleep and work at her own pace. She continues to progress well above “grade level” according to the yearly standardized tests she takes, and she’s very well socialized, so we aren’t concerned about spoiling her into stupidity.

Is she spoiled? I don’t think so, but yes, she is pampered. Her clothing is bought with an eye to texture, so it won’t bother her skin. She has something I still haven’t ever had in my life: a brand new orthopedic mattress. She gets whatever she needs, as soon as I can get it for her, because I don’t want her to be disabled as I am. I push her more than me, because she isn’t deconditioned and neither she nor I wants that to happen to her. But yes, she does get a lot of pampering. It’s as important for her as it is for any other person with a chronic illness.