Fibromyal­gia (FM) is a dis­or­der of hyper­sen­si­ti­za­tion, mean­ing that our bod­ies are “keyed-up” all the time. FM patients are more sen­si­tive to pain, but also to hot and cold, drugs, spices, preser­v­a­tives, scents, tex­tures, chem­i­cals, changes in the weather—everything. Our immune sys­tems are often depressed, so we catch what­ev­er we’re exposed to. We take longer to heal from falls and oth­er injuries while being more like­ly to fall due to issues with blood flow to the inner ear region (see FM Net­work News, April 2006, p 14). 

FM patients expe­ri­ence peri­od­ic wors­en­ing of symp­toms called flares. Flares are usu­al­ly brought on by stres­sors of some sort—illness, injury, over­work, emo­tion­al stress, any­thing that upsets the patien­t’s equi­lib­ri­um. While FM is not con­sid­ered a degen­er­a­tive dis­ease, those patients who live under con­stant stress do tend to degen­er­ate fair­ly consistently. 

I was diag­nosed with fibromyal­gia and chron­ic fatigue syn­drome (CFS) after sev­er­al years of wors­en­ing fatigue, increas­ing, inex­plic­a­ble pain, and grow­ing intol­er­ance for exer­cise that did­n’t respond to any treat­ment. I was unable to do any­thing but sleep, go to work, and take care of Katie. All too soon, I was unable to work reli­ably. My envi­ron­men­tal aller­gies, which had been rel­a­tive­ly easy to man­age ear­li­er, inter­fered more and more with my life. I found myself catch­ing any infec­tion to which I was exposed, how­ev­er briefly, and had a hard time recov­er­ing from them. I had a chron­ic low-grade fever with worse fevers any time I overex­ert­ed myself or was under more stress. I’d had trou­ble with chron­ic headaches since I was 17, but now they became migraines. No mat­ter how much sleep I got, I was always tired. 

The years imme­di­ate­ly pri­or to my diag­no­sis were par­tic­u­lar­ly stress­ful in many ways. I was mar­ried and divorced twice, moved and changed jobs repeat­ed­ly to suit my hus­bands, and had sev­er­al surg­eries. My preg­nan­cy was a blessed sur­prise, but not an easy one, end­ing in a C‑section at 8 months. Those 8 months were full of con­stant, debil­i­tat­ing nau­sea that nev­er went away (far beyond “morn­ing sick­ness” — hyper­eme­sis gravi­darum).

Unfor­tu­nate­ly, after find­ing no relief from var­i­ous sleep reme­dies and minor pain meds, I stopped seek­ing any treat­ment around 1994. I fig­ured I could sim­ply deal with the pain, and I did for years. I lost more and more func­tion­al­i­ty, though, as the untreat­ed symp­toms wors­ened. I may nev­er reach the same lev­el of health as I might have had I been more proac­tive in seek­ing treat­ment and in reduc­ing the stres­sors in my life. 

In 1998 I met Sam, and by ear­ly 1999 we were blend­ing our fam­i­lies. That was­n’t an easy process, and the next five years were fraught with anx­i­ety as a result. In 1999, my ex-hus­band Wayne died. Our daugh­ter Katie was diag­nosed with fibromyal­gia in 2000. Around the same time, I had a bad fall lead­ing to a flare that just did­n’t end. I was­n’t able to work out­side the home for more than a month at a time for many years. Los­ing my job meant los­ing access to health­care for most of a decade due to our dys­func­tion­al health­care system. 

I did­n’t get real­ly seri­ous about get­ting good care until after I also failed to man­age attend­ing col­lege class­es in my first attempt to return to col­lege. In 2005, I final­ly per­sist­ed in my efforts until I had a rheuma­tol­o­gist and oth­er spe­cial­ists, includ­ing a sleep spe­cial­ist and a pain man­age­ment doctor. 

At the same time, I strength­ened my bound­aries, and I have con­tin­ued to do so. My fam­i­ly sup­port­ed me as I found my lim­its. I had to low­er my stan­dards in some areas, del­e­gate tasks in oth­ers, hire help in some. I’ve removed cer­tain influ­ences from my life com­plete­ly. The stres­sors I can­not avoid are cush­ioned by bet­ter stress relief behaviors. 

While I still have pain, fatigue, and oth­er prob­lems, the right treat­ment, func­tion­al behav­iors, and fam­i­ly sup­port have made a world of dif­fer­ence in my life. I’m able to work full-time again (from home). I still have to be very care­ful about my spoons, but I’m able to live a full and reward­ing life. 

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