The Sisterhood of the Traveling Pain

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!

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25 Responses to “The Sisterhood of the Traveling Pain”

  1. Barefoot Baroness Says:

    You have said what I and so many of us feel. I am a woman in my mid 50’s who diagnosed with this ” fad” diagnosis in 1991.
    I too fought it all the way despite actually having something to call my symptoms was a relief. I remember that bittersweet moment like it was yesterday.

    My one thing I can say or share is that if you are aware of just how much negativity can have a drastic effect on your symptoms and ability to cope with the pain, and having that awareness just may be your saving grace in times of dark hours.
    Please know that I am always impressed with younger women who seem to have “gotten this” at a younger age than I did. Bravo you!! I respect and admire your open awareness and your willingness to share. .

  2. thank you, baroness! i work hard not to be too negative about it, just as you suggest. i am flattered that you found something useful in this post. i had just seen another fibro commercial and it made me sit down and write this. i admire anyone who can still be cheerful and positive after living with sometimes excruciating chronic pain — whatever the cause!! thank you for your kind words! r

  3. Barefoot Baroness Says:

    Your words in the above post need to be heard by many more. And then some more. Even having close family and friends try and understand what this illness is like to live with can have negative ramifications FM comes with it’s own set of trials just by it’s mere name. I was almost hoping for any other diagnosis just because there is such a credibility issue with FM. It’s no wonder a person cringes’s when the word is pronounced out loud. I did. Anything else. I even in a crazy way was pulling for the diagnosis of Lupus as the doctors are on the fence about my diagnosis. With Lupus as pathetic as it will sound at least has some credibility. No one would second guess me, second guess that diagnosis.

    Why I don’t know since the symptomology has been around for as long as western medicine has been tracking such data. Just have been tagged many different names over the generations.

    To leave off on a more positive note can I just say how much I Love “The Sisterhood of Traveling Pain”? And can I be part of this particular sisterhood? I have credentials.
    I also should tell you too that your sense of humor in your writing style left me in tears. Tears of giddiness that I have not experienced in a long time. You know what they say about laughter and medicine. so much I wish to use it myself. I felt more free emotionally than I have for some time. Thank you for that!

  4. i hereby dub thee an official member of the sisterhood of the traveling pain, my dear baroness!

    it’s sad that we have to feel like it’s not a “real” disease, and i had to laugh when you wrote that you were almost pulling for a diagnosis of lupus instead, because so was i!!!!! you are 100% correct that at least with something like lupus, people are sympathetic and understanding. somehow when you say you were diagnosed with fibromyalgia people seem to roll their eyes and just say, “uh – yeah. right.” (even if they don’t say the words, the words hang in the air between you, right?) so i don’t even really talk about it. i just say i ache. it’s just not worth the creepy feeling I get from their reaction — and that is just really and truly stupid on my part, i know, but i can’t help it. why do i care what anyone else thinks?? because i’m stupid and insecure, i guess….

    i am glad if it made you laugh. that was my hope. that, and to make it, maybe, more REAL to others.

    see? stupidly i do care what other people think. sorta.

    thank you again for your kindness!! rlb

  5. Barefoot Baroness Says:

    Thank you rlb. We must come up with your royal name. lol..
    I appreciate the work that goes into writing and good writing is just so much fun to read even if it’s about something we wish did not even touch our lives.
    It’s such a sad reality that so many of us who live daily in pain have to feel ashamed of it.

    I’m glad you understood when I shared that I’d had the hope of being diagnosed with Lupus instead of FM. At the time in the early 90’s it seemed that the medical community was coming out with one new syndrome after another. And frankly I had had several. TMJ syndrome, which actually turned out to be complete degeneration of the cartilage between my upper & lower jaw. A few other health issues I’d been diagnosed with in my prime were IBS, Carpel Tunnel, Endometriosis. So when in 1991 the word FM was uttered I was like you. “BITE YOUR TONGUE!” I thought it was a fad term to be used when they had nothing better to tell a patient. The 90’s version of the of 50’s Valium. Only by the 90’s they had decided giving a woman a pill for anything just might not make sense. hmmm… So I was thinking, itfigures the Verbal Equivalent. Fibromyalga. I was hoping it would be anything else as long as it was dare I say it, respectable?
    But the pain did not go away, the doctor shopping looking for an answer continued, anything but to become dependant to medication and a slave to my body I looked for and then tried. All to no avail until my only choice was to maybe take a better educated look at what the doctors were talking about. What did I have to lose? I’d all ready learned from being a woman who has a chronic migraine problem that this to is to be looked down upon. I learned a long time ago and not much has changed in that there are many biases against women in the medical community. I only had what I thought of myself to worry about, since most of hose in my life who were going to take sides had all ready done so.

    Educating, advocating and looking for support for myself could be no worse than the isolating I was doing a the time due to pain.
    This serendipitously happy solution for me. No it didn’t make any difference in my pain levels, made no difference in how I was able to function daily… or not. It didn’t do a lot of things I’d been looking for I guess. But sometimes I’ve discovered through being a person whose life has been compromised by pain the things we expect to find when we are looking are not always the things we need.
    I am so thankful now that Lupus was not the diagnosis, and I pray it never is. My doctors despite more tests than I can count are still on the fence about a Lupus diagnosis. But having known a woman in a friendly way who died from Lupus I am most grateful that FM is not a terminal illness. Albeit there are days when I feel like it must be I am still a grateful person with FM.

    I don’t know if you happened to see the Dr Oz show about Chronic Pain this week. I was reluctant to watch it on a couple fronts.
    One (1) : I rarely watch TV and even more rarely daytime TV,
    Two (2) : I was certain it would be the same “blah, blah, blah..” that most television seem to promote.
    I’m going to list a link in case you missed it. I’m curious what your take is. Do you mind? He spoke on how awful it is we (people who live with CP) have to feel ashamed. and more.. I will not say more so you have no pre-conceived ideas because of something I said.
    http://action.painfoundation.org/site/R?i=mR5Q5vBdVvY263N1oAdGVA
    I plan on posting more about this over at my blog, about his show, and the shame that comes from CP. .

    Good grief girl. Just because I’m not sleeping does not mean you should have to suffer through my middle of the night, middle of the road musing. I do apologize but I’m not editing what I wrote. 😉 I really hope you do not mind.

  6. my dear baroness, i do not mind at all! i don’t sleep well either…in fact, as i was reading your reply i began to wonder if indeed, we are not the same person – or at the least, twins separated at birth! (my mother assured me, though, that i did not have a twin – at least, not as far as she knows!) it’s not funny, really, but i was kind of laughing as i read. i, too, have had most of the syndromes of the past couple of decades, in addition to being extremely, deathly ill when i was born…let’s see: severe migraines; polycystic ovarian syndrome – took them til i was like 32 to figure out why i had this huge, long history of gyn-related problems until they figured that one out – so needless to say, tons of cysts, tons of pain, lots of infertility and several miscarriages; tmj – turned out to be something else as well; blood clots for no reason – believe me i had every single work up they could find to figure out why i have had three clots and why i have a continuously elevated white count — all with no answers of course; FM; my intestine ruptured out of nowhere about ten years ago, so, emergency colostomy, near-death experiences, reversal of colostomy and then hernias from the surgeries, resulting in a 12″ x 12″ piece of mesh in my abdomen; juvenile arthritis; arthritis in my spine; an ovarian cancer scare that turned out to be a corner of the mesh gone wild; mild diabetes; the one child i was lucky enough to have (and during my pregnancy i had every bad problem you could have, so i truly am blessed to have my son), was breech and put his foot out of the placenta requiring an emergency c-section and then they found out i had an odd-shaped baby oven; chronic abdominal pain….i could go on but it is getting depressing. i have an extremely high tolerance for pain and have doctor shopped and pharmacy shopped my way through the last twenty-five, maybe thirty, years. i totally get what you were saying. like you, i had an acquaintance – two actually – die at fairly young ages from lupus and felt immediately ashamed that i had once wished for that diagnosis over FM. i, too, hope that is never my diagnosis. and i feel blessed that while i have had many, many problems, none of them have been terminal. although i have had a handful of near-death experiences, i am lucky to still be here. FM or not. know what i mean? there have been times when i was so truly annoyed that i have gone through so many tests, scans, etc., etc., and still have no definitive answers (i still find it difficult to accept FM as a “definitive” answer), but, like i said, i am still here and i am glad i am.

    i will look at the doctor oz show this weekend and let you know what i think, ok? thanks for sending me the link. i have found him to be interesting and informative on occasion.

    take care – robin

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