When one of my many doctors looked me in the eye and said, “Well, given all your symptoms, history and my examination, I feel confident diagnosing you with Fibromyalgia”, I admit it, I laughed at him; loudly, and perhaps not a bit impolitely.
“Fibromyalgia?” I snorted, unable to stop myself. “You’re kidding, right?” I did my best Dr. Spock imitation, raising my left eyebrow and looking at him quizzically.
“Um, no, I am not kidding. You see, Fibromyalgia –“he began, but I cut him off.
“Fibromyalgia. Right. Isn’t that what you tell people – especially women you consider to be hypochondriacs – when you can’t figure out what is really wrong with them? Or when you don’t think there really IS anything wrong with them? C’mon. If you can’t figure out the true cause of my chronic pain, just admit it. I won’t mind, won’t be angry. In fact, I may even respect you all the more for being honest with me. So what’s the real deal-io Doc?”
I’m sure you can guess by now that this particular doctor was not best pleased with this particular patient, and his patience (that’s a pun, get it?) was running thin – obviously not true since I am quite plump, actually. Never mind, as usually happens when I tell a story, I digress. Back to the now red-faced, displeased doctor.
“I don’t understand you, Ms. Cardew, not at all. Fibromyalgia is not just something I say when I don’t know what is really wrong. Nor do I consider any of my patients hypochondriacs. I totally disagree with all you just said and am, I must admit, offended by it. If you do not value my medical opinion I am sure I can refer you to another doctor.”
I was surprised at how hard he took my joking – and to be honest, I was waiting (praying, actually) that he would look at me and utter the line from Wilde’s The Importance of Being Ernest that was the only saving grace of having my name: I warn you, Miss Cardew, you may go too far. Although in fairness, my favorite mutation of that line is the one my mother and I always said when someone went beyond the pale: This time, Miss Cardew, you have gone too far! Heavy British accent and lots of emphasis on the “too”, drawing it out. (That made us split our sides with laughter – we are easily entertained, I am sure you must think…and you are correct.) Sadly, he didn’t utter those magic words; sadder still, hardly anyone ever does anymore, what with the state of public education these days. No one reads the classics anymore – and if they do, they don’t understand them. C’est la vie. Again, I am off track.
I smiled slightly at poor Dr. Ferris. “I’m sorry, doctor. Truly I am. And please believe me, I in no way meant to impugn your…medical…standing or opinion. I just thought it was funny, in an odd – I see now – way. Um, you know, you see all those commercials on television, and all the symptoms are so vague. And then the medicines they advertise cause worse side effects than the pain itself…I don’t know, Sir. I think Fibromyalgia has somehow just come across to me as a “catch-all” when no one can figure out what else to say. Sort of a palliative, I mean. So that the person in pain actually feels like they are not crazy and there really is something wrong with them. It’s television, Sir, not you. I am just a victim of advertising. I’m sorry. Can you forgive my rudeness?” Big smile now.
Puffed up again to look like a real doctor, Dr. Ferris smiled benignly at me and patted my hand. “Dear, there is nothing to forgive. I understand how confusing all the misinformation out there can be.”
Now that we were friends again, he began explaining Fibromyalgia to me in all earnestness. I wish he hadn’t.
Fibromyalgia is a bitch. No one knows what causes it, though some hypothesize that potential causes and/or triggers include a physical or emotional trauma, sleep disturbances (exacerbated by the disease), an abnormal pain response in the brain, or even an infection, although no particular infection has been identified as a definite correlation.
The symptoms (chronic body-wide pain, joint/muscle/tendon tenderness) are vague; they could be caused by any number of things. What stands out, apparently, is that the pain goes on and on and on. For some lucky Fibro Sisters, it is only a few months. Most of us, however, suffer with it for years. Accompanying the burning, aching, mind numbing, strength-zapping malaise, there are other possible prizes: depression (you ache all the time, can’t imagine why you would be depressed, can you?); chronic fatigue (you can’t sleep the whole night through because of the pain); constant neck or back pain; an underactive thyroid; other sleep disorders. You fall asleep in pain, go through the day in pain, and wake up in pain. Yipee. And oddly enough, even though it often feels like the pain is emanating from the joints (like Arthritis), it isn’t. It’s actually in the soft tissues of the body.
Long-term Fibromyalgia party-bonuses can include heart palpitations (I have those in abundance), problems with concentrating and memory (is that why I can’t remember where I parked my car at the mall?), numbness in the hands and feet, and, best of all, migraine headaches.
Fibromyalgia: the cornucopia of symptoms, the smorgasbord of disorders. No cause. No real cure. Oddly enough, Dr. Ferris told me that what helps most is exercise and sleeping normally. Ha! But it hurts to move around too much and I can’t sleep because I have Fibromyalgia. Hmm. Kind of a conundrum, wouldn’t you say? Your body hurts when you move, and you can’t sleep through the night, but if you want to get better, you have to exercise regularly and sleep through the night. My head hurts just thinking about it.
Treatments include physical therapy and exercise (oh joy, more moving about!) and stress-relief techniques. Oh, and let’s not forget our pharmaceutical cocktails…Anti-depressants, muscle relaxers, pills that change the way your brain interprets pain. Don’t get me wrong, I am a firm believer in “better living through chemistry”, even considered getting it tattooed on my shoulder, but it’s all just too much.
As much as I tried to joke about it, Dr. Ferris was right all those years ago. I do have Fibromyalgia – at least all the classic symptoms. Part of the physical exam for the disease is that you must have tenderness in at least eleven of eighteen areas, and it must have lasted for at least three months. I had tenderness in sixteen of the eighteen, and when I saw Dr. Ferris, it had been going on for at least three years. The pain travels, in a sense. Sometimes it is in my elbows and knees, other times in my spine; still other times it is in my shoulders and my ribs. There’s no predicting where it will hit next or how long it will last. Six years after diagnosis, I am still fighting it. And I am tired of it, with no end in sight. I am, though, much luckier than others I know with this disease. Wonderful, brilliant women whose pain is so debilitating that it keeps them from doing much at all. I at least can still work and write.
I suppose the point of this was to say that Fibromyalgia really sucks. If you do not suffer from it, thank the Lord or whichever Spiritual deity you choose, that you do not. And next time you hear about it, it’s okay to laugh – a little. But know that it is real, it hurts and it is never-ending.
So to those of you who are members of the Sisterhood of the Traveling Pain, I salute you. Keep up the good fight. Somehow we will come out on top!