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.
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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.
