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.