I Hate My Body

It has noth­ing at all to do with my looks. It has every­thing to do with hurt­ing all the time, and not being able to do what I should be able to do. What I want to do. What I NEED to do. What I could do with­out a prob­lem just a few years ago.

I start­ed to just keep this pri­vate, and it’s pos­si­ble that I should have done so. But then I decid­ed that maybe some of the peo­ple who know me should know what the heck is going on, and decid­ed to open it any­way. Any­body who even thinks about say­ing “just get over it” or any­thing sim­i­lar about chron­ic pain and the result­ing depres­sion should just stop read­ing now.

I have fibromyal­gia syn­drome (FMS), as diag­nosed by a rheuma­tol­o­gist about 5 years ago after exhaus­tive attempts to find some oth­er rea­son for how I feel. FMS is a diag­no­sis that’s made first by elim­i­nat­ing all the oth­er pos­si­bil­i­ties that might explain the patien­t’s symp­toms. Then, if the patient has suf­fered from “wide­spread pain in all four body quad­rants for at least three months” and at least 11 of 18 spe­cif­ic ten­der points show up in an exam done by a cer­ti­fied rheuma­tol­o­gist, she’s diag­nosed with FMS. Those are the guide­lines laid down by the Amer­i­can Col­lege of Rheuma­tol­ogy in 1990.

Yes, FMS is real. There are a vari­ety of the­o­ries about what caus­es it. This is from an ABC News arti­cle (now archived at http://www.tidalweb.com/fms/fm_proof.shtml ):

The researchers found that fibromyal­gia patients have sig­nif­i­cant­ly less blood flow to the parts of their brains that deal with pain. The high­light­ed yel­low areas show blood flow in the brain; fibromyal­gia patients appear to have less blood flow to areas of the brain that deal with pain. (ABCNEWS.com) And com­pared to healthy peo­ple, they also have twice the lev­el of a brain chem­i­cal called Sub­stance P, which helps ner­vous sys­tem cells com­mu­ni­cate with each oth­er about painful stim­uli. Ele­vat­ed P lev­els may actu­al­ly pro­duce the high­er lev­els of pain through­out the body.

My per­son­al belief is that some peo­ple have a genet­ic pre­dis­po­si­tion to FMS, and if they’re under high lev­els of stress for extend­ed peri­ods of time, they’re like­ly to devel­op it. The per­cent­age of peo­ple with FMS who have expe­ri­enced child or spousal abuse is incred­i­bly high, which does­n’t sur­prise me at all. 

Katie was also diag­nosed with FMS in ear­ly 2000, after going through her father’s divorce and his 2–1/2 year bat­tle with leukemia (he died in Novem­ber 1999). For­tu­nate­ly, hers isn’t as bad. I thank all that’s holy for that and the fact that she seems to be out­grow­ing it over time. Unless she has a migraine, she sel­dom gets beyond lev­el four and is usu­al­ly at lev­el two pain. That’s more than what I’d like for her to live with—I’d rather she have no pain at all most of the time, like nor­mal peo­ple! I hope it goes away and nev­er both­ers her again, but I fear that it may make any injury or ill­ness hit her hard­er and may come back in any high-stress peri­od of her life, even some­thing that’s “good stress.”

Any pain, even that caused by oth­er con­di­tions or injuries, stays longer and is more intense for FMS patients. I have had arthri­tis for many years—no sur­prise, as it runs pret­ty solid­ly on both sides of my fam­i­ly. It start­ed in my knees when I was all of 13 years old. It’s worse now—knees, hips, hands, neck, all over. I think that’s why, although FMS isn’t con­sid­ered a degen­er­a­tive con­di­tion, my pain lev­els just get worse and worse. Arthri­tis IS a degen­er­a­tive con­di­tion, and as it gets worse, the FMS gets worse.

For all my whin­ing, I’ve real­ly got a fair­ly high pain tol­er­ance. For the first few years, I was usu­al­ly at a lev­el six most of the time. I even had lev­el four or five days at times! Now I’d love to have lev­el six days. They’d be a relief. I stay at lev­el sev­en most of the time, and today is a lev­el eight with a few lev­el nine periods.

Ultram has nev­er giv­en me much relief at all, although doc­tors seem to con­sid­er it pret­ty strong stuff. Now it does­n’t even make a dent in the pain. I’m aller­gic to codeine and have to be real­ly care­ful with any kind of nar­cot­ic. Hon­est­ly, I’ve yet to find any kind of pain meds that give me any relief at all unless they knock me out com­plete­ly. Then, of course, I’m total­ly non-func­tion­al, and when I wake up the pain is with me again any­way, so it’s just putting things off. Liv­ing that way isn’t a viable choice. So I don’t take any­thing for the pain 99.9% of the time—I have a few Ultram left, but that’s it, and no way to get more of it or any­thing stronger these days. I take ibupro­fen as an anti-inflam­ma­to­ry to help with arthri­tis because that’s what works best and is most avail­able to me (I don’t have health insur­ance and I am most def­i­nite­ly unin­sur­able due to this crap). But I won’t pre­tend it helps the pain.

I don’t want to be defined by my pain and its effects. I don’t want to be this per­son who is trapped at home most of the time. I hate it.

I don’t like what the con­stant pain does to my atti­tude and out­look. I don’t like being depressed. I don’t like being grumpy, or hav­ing such a low tol­er­ance for annoy­ing things and peo­ple. Hon­est­ly, this isn’t ME.

So I hate my body. I well and tru­ly hate it. I don’t trust it. It betrays me con­stant­ly. I can­not find it in myself to find myself attrac­tive in any sense of the word, because of this hor­ri­ble body that I’m trapped in. I hon­est­ly don’t think it would mat­ter how I look on the out­side to any­one else—I hate it. It does­n’t help, either, that the more pain I’m in, the less active I can be, and the fat­ter I get.

Sev­er­al of Dr. Kevorkian’s patients have had FMS. I did­n’t under­stand why a few years ago. Now I do.

My fam­i­ly of ori­gin does­n’t believe FMS exists. They haven’t ever, in all hon­esty, thought that any­thing I expe­ri­enced that they haven’t expe­ri­enced was real or impor­tant. They nev­er believed any­thing was wrong with me when I expe­ri­enced var­i­ous med­ical con­di­tions for which there are treat­ments, surg­eries, and diag­nos­tic tests—they cer­tain­ly aren’t going to believe in the effects of some­thing like FMS.

My father has expe­ri­enced pret­ty bad back pain since the ear­ly ’70s. He’s final­ly get­ting relief due to his recent surgery, but for most of that time, he’s grit­ted his teeth through the days and crawled into a bot­tle every night and on week­ends. (Oh—there’s also a pret­ty damned high inci­dence of alco­holism on both sides of my fam­i­ly.) They’re South­ern Bap­tist and believe that any drink­ing is wrong, but it’s okay for him because he’s hurt­ing. I guess it’s med­i­cine by his lights.

But with me, this is all just hypochon­dria as far as they’re con­cerned. I won­der, some­times, if I crawled into a bot­tle, too, would they take the pain seri­ous­ly? Would they actu­al­ly believe that it exists? Prob­a­bly not.

In any case, I’ve yet to find alco­hol any more effec­tive than any oth­er pain reliev­er, and its neg­a­tive effects (and the pos­si­bil­i­ty of turn­ing into an alco­holic myself) are bad enough that I sel­dom have so much as one hard lemon­ade in any giv­en week.

In their ver­sion of the world, sam­bear is being tak­en in by my manip­u­la­tive ways and should dump me so that I’d have to “stand on (my) own two feet again.” Absolute­ly any time he does any­thing that they think I should be doing (like tak­ing Katie any­where, or pick­ing her up from anywhere—or even doing much with his own kids, because that’s sup­posed to be a wom­an’s place), it’s because I’m “using” him. The fact that he WANTS to do the cook­ing and gro­cery shop­ping because he’s bet­ter at it and likes what he does bet­ter than what I’d do, or that he actu­al­ly wants to be involved in the kids’ lives and, in fact, insists on it, is some­thing they refuse to believe—they think it’s just because I’m “too lazy” to do it.

I’ve nev­er known any­one as sup­port­ive as sam­bear. Ever. He’s absolute­ly incred­i­ble, and I know how very lucky I am to have him as my part­ner. I don’t feel that I deserve him, and one of the things that gets to me the most is that this stu­pid body keeps me from being the part­ner he does deserve, or the moth­er that Katie deserves.

======================
Pain Scale for FM & MPS

0‑Pain free
1‑Very minor annoyance—mild aches to some parts of the body. No pain med­ica­tion is needed.
2‑Minor annoyance—dull aches to some parts of the body. No pain med­ica­tion is needed.
3‑Annoying enough to be dis­tract­ing. Over-the-counter pain reliev­ers (such as Naprox­en Sodi­um, Aceta­minophen, or top­i­cal treat­ments such as Absor­bine or Arthri­tis Pain reliev­ing rubs) take care of it.
4‑Can be ignored if you are real­ly involved in your work, but still dis­tract­ing. Over-the-Counter pain reliev­ers remove pain for 3–4 hours.
5‑Can’t be ignored for more than 30 min­utes. Over-the-counter pain reliev­ers help some­what (bring pain lev­el from 5 to a 3 or 4) with pain for 3–4 hours.
6‑Can’t be ignored for any length of time, but you can still go to work and par­tic­i­pate in social activ­i­ties. Stronger painkillers (such as Ultram) relieve pain for 3–4 hours.
7‑Makes it dif­fi­cult to con­cen­trate, inter­feres with sleep. You can still func­tion with effort. Stronger painkillers (such as Ultram) are only par­tial­ly effec­tive. (Stronger pain killers bring pain from a 7 to 4–6.)
8‑Physical activ­i­ty is severe­ly lim­it­ed. You can read and con­verse with effort. Stronger pain killers (such as Ultram) are not effec­tive. (Nar­cot­ic pain killers do bring this pain down to a lev­el 3 or lower.)
9‑Non-func­tion­al for all prac­ti­cal pur­pos­es. Can­not con­cen­trate. Phys­i­cal activ­i­ty halt­ed. Pan­ic sets in. (Nar­cot­ic Pain killers bring the pain lev­el from 9 to the 4–6 level.)
10-Total­ly non-func­tion­al. Unable to speak. Cry­ing out or moan­ing uncontrollably—near delirium.