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A Decent Explanation of What It’s Like to Have Fibromyalgia Syndrome


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A let­ter to the healthy world from the land of chron­ic pain and fatigue

A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE

If you were born with healthy genes, you may know me, but you don’t under­stand me. I was not as lucky as you. I inher­it­ed the pre­dis­po­si­tion to chron­ic pain, fatigue, and for­get­ful­ness. I was diag­nosed with fibromyal­gia (FMS) after months, years, or even decades of mys­te­ri­ous phys­i­cal and emo­tion­al prob­lems. Because you did­n’t know how sick I was, you called me lazy, a malin­ger­er, or sim­ply ridicu­lous. If you have the time to read on, I would like to help you under­stand how dif­fer­ent I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad dis­ease. In fact, it isn’t a dis­ease at all, and it isn’t even new. In 1815, a sur­geon at the Uni­ver­si­ty of Edin­burgh, William Bal­four, described fibromyal­gia. Over the years, it has been known as chron­ic rheuma­tism, myal­gia, and fibrosi­tis. Unlike dis­eases, syn­dromes do not have a known cause, but they do have a spe­cif­ic set of signs and symp­toms which, unfor­tu­nate­ly for the patient, take place togeth­er. Rheuma­toid arthri­tis and lupus are also syndromes.

2. The many phys­i­cal and emo­tion­al prob­lems asso­ci­at­ed with FMS are not psy­cho­log­i­cal in ori­gin. This is not an “all in your head” dis­or­der. In 1987, the Amer­i­can Med­ical Asso­ci­a­tion rec­og­nized FMS as a true phys­i­cal ill­ness and a major cause of disability.

3. Syn­dromes strike life-long ath­letes as vicious­ly as they do couch pota­toes. They can be dis­abling and depress­ing, inter­fer­ing with even the sim­plest activ­i­ties of dai­ly life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain—My pain is not your pain. It is not caused by inflam­ma­tion. Tak­ing your arthri­tis med­ica­tion will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoul­der, but tomor­row it may be in my foot or be gone. My pain is believed to be caused by improp­er sig­nals sent to the brain, pos­si­bly due to sleep dis­or­ders. It is not well under­stood, but it is real.

2. My fatigue—I am not mere­ly tired. I am often in a severe state of exhaus­tion. I may want to par­tic­i­pate in phys­i­cal activ­i­ties, but I can’t. Please do not take this per­son­al­ly. If you saw me shop­ping in the mall yes­ter­day, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most like­ly, pay­ing the price for stress­ing my mus­cles beyond their capability.

3. My forgetfulness—Those of us who suf­fer from it call it fibro­fog. I may not remem­ber your name, but I do remem­ber you. I may not remem­ber what I promised to do for you, even though you told me just sec­onds ago. My prob­lem has noth­ing to do with my age but may be relat­ed to sleep depri­va­tion. I do not have a selec­tive mem­o­ry. On some days, I just don’t have any short-term mem­o­ry at all.

4. My clumsiness—If I step on your toes or run into you five times in a crowd, I am not pur­pose­ly tar­get­ing you. I do not have mus­cle con­trol for that. If you are behind me on the stairs, please be patient. These days, I take life and stair­wells one step at a time.

5. My sensitivities—I just can’t stand it! “It” could be any num­ber of things: bright sun­light, loud or high-pitched nois­es, odors. FMS has been called the “aggra­vat­ing every­thing dis­or­der.” So don’t make me open the drapes or lis­ten to your child scream. I real­ly can’t stand it.

6. My intolerance—I can’t stand heat, either. Or humid­i­ty. If I am a man, I sweat^hellip;profusely. If I am a lady, I per­spire. Both are equal­ly embar­rass­ing, so please don’t feel com­pelled to point this short­com­ing out to me. I know. And don’t be sur­prised if I shake uncon­trol­lably when it’s cold. I don’t tol­er­ate cold, either. My inter­nal ther­mo­stat is bro­ken, and nobody knows how to fix it.

7. My depression—Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suf­fered from FMS as well as oth­er relat­ed ill­ness­es. Severe, unre­lent­ing pain can cause depres­sion. Your sin­cere con­cern and under­stand­ing can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress—My body does not han­dle stress well. If I have to give up my job, work part-time, or han­dle my respon­si­bil­i­ties from home, I’m not lazy. Every­day stress­es make my symp­toms worse and can inca­pac­i­tate me completely.

9. My weight—I may be fat or I may be skin­ny. Either way, it is not by choice. My body is not your body. My appe­s­tat is bro­ken, and nobody can tell me how to fix it.

10. My need for therapy—If I get a mas­sage every week, don’t envy me. My mas­sage is not your mas­sage. Con­sid­er how a mas­sage would feel if that charley horse you had in your leg last week was all over your body. Mas­sag­ing it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, reg­u­lar mas­sage can help, at least temporarily.

11. My good days—If you see me smil­ing and func­tion­ing nor­mal­ly, don’t assume I am well. I suf­fer from a chron­ic pain and fatigue ill­ness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness—Even those who suf­fer from FMS are not alike. That means I may not have all of the prob­lems men­tioned above. I do have pain above and below the waist and on both sides of my body which has last­ed for a very long time. I may have migraines or hip pain or shoul­der pain or knee pain, but I do not have exact­ly the same pain as any­one else.

I hope that this helps you under­stand me, but if you still doubt my pain, your local book­store, library, and the inter­net have many good books and arti­cles on fibromyalgia.

Author’s note: This let­ter is based on com­mu­ni­ca­tions with peo­ple through­out the world, males and females, who suf­fer from fibromyal­gia. It does not rep­re­sent any one of the over 10,000,000 peo­ple with FMS, but it can help the healthy per­son under­stand how dev­as­tat­ing this ill­ness can be. Please do not take these peo­ple and their pain light­ly. You would­n’t want to spend even a day in their shoes…or their bodies.

–Author Unknown

Cur­rent Mood: awake
Cyn is Rick's wife, Katie's Mom, and Esther & Oliver's Mémé. She's also a professional geek, avid reader, fledgling coder, enthusiastic gamer (TTRPGs), occasional singer, and devoted stitcher.
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