Day 246. Weighing the Pain Scale.

One of my favorite bloggers, an amazing college student, writes Simple and Well, a blog about her experience with Hypermobility Ehlers Danlos Syndrome.  It differs from the type I have (Vascular); each of the types shares the main symptoms with the others, the identifiable ones being hypermobility, skin fragility, joint pain, etc.  My symptoms of hypermobility appear on a small scale (causing joint pain), while the activities of daily living cause this blogger’s joints to sublux, or to come out of their sockets.  Rolling over in bed, for example, may cause her hip to come completely out of its socket.  Her shoulder, she writes, has the tendency to “pop,” as do her ankles.

So what does she do?  She tapes up her loose joints for support and goes swimming to get a good workout.  That is one tough young woman.  She is my current hero.

Mosby Pain Scale

Last week, she wrote her own version of a pain scale.  If you haven’t spent much time in the hospital of late, you may not be familiar with the Mosby Pain Rating Scale that incorporates the McCaffrey 1-10 scale numerical reference with words along with the Wong faces scale (image right). I’m particularly fond of the faces of misery that accompany the numerical scores for those of us for whom numbers are particularly meaningless.

The pain scale is a good idea as an attempt to quantify and measure pain empirically, when viewed from the perspective of the nurse, doctor, or pharmacist.  One must measure the pain to treat it. However, from the perspective of a patient, those faces of misery seem laughable. How can they possibly measure pain, an entity that is unquantifiable and incomparable from person to person.

I’ve often thought about this when I have confronted those infernal frowning faces in the hospital or the doctors’ office. How does mundanity of my daily #4, “Hurts a little more,” or on the McCaffery Scale “Moderate,” have any mathematical, or for that matter existential association with the things-are-getting-worse-ness of a #6, “Hurts even more” or on McCaffery still “Moderate.” In fact, I’m still “Moderate” until I am a #7 on McCaffery, which is a long time before a medication decision might be made.  But by the time I am a #7, it may be too late to take a moderate dose of medicine because it is important to treat pain before it becomes too serious; otherwise, it is very difficult to manage.

The rating system becomes more complex because sometimes my leg (where I had an aneurysm rupture) may feel like that face above the #6 “Hurts Even More,” but the rest of my body is pretty okay.  I can manage having that pain better than some other days.  Thus, I can manage taking less pain medication than I would take on a day when I was feeling a #6 AND every joint in my body hurt on top of it.  I wish there was a #6+ or a #6J-with feeling.  That, to me, would have some real empirical value.

Still, I was pretty sure learned from my venture into pain research that I am a big, fat baby. If I were to follow my favorite blogger’s pain scale, I believed that the numerical scores I would assign myself daily would be dramatically lower.  I quite frankly assign pain scores the way America assigns grades on English papers: in a ridiculously inflated fashion.

I have spent the last week or so wondering what that inflation says about me. Do I misunderstand the pain scale? Am I malingering for attention? Love from doctors?  More pain pills? I worry about these things constantly.  I am a baby, no question.  If I just powered through this, I would have less pain.

So then I had a epidural injection on Friday. I absolutely detest getting them, as I guess anyone would hate having a needle poked into a vertebra and into the nerve.  So the doctor uses an X-ray machine to find the nerve precisely; then he injects me with enough local anesthetic so that I don’t jump off the table.  Then, he stimulates that nerve to make sure he has the one that is causing the leg pain—so I feel not exactly pain, but just sensation all the way down my leg and even in the foot where it hurts.  Then, he injects tons of anesthetic, followed by cortisone (which will hopefully block the pain for a few months, until he does it again).

The payoff for the misery of having the injection is standing up and walking off of the operating room table:  about an hour of pain-free walking around.  It hurts like hell in my lower lumbar, where he poked me, but I don’t care.  My leg doesn’t hurt for the first time I can remember.

My doctor’s office building is in Bethesda, kind of a tony address; right across the hall from his office is the snack bar, where one can find the expected coffee and candy bars.  However, the reason we drive 45 minutes to Bethesda instead of seeing the doctor five minutes away in his D.C. office is that the Bethesda snack bar also sells Swarovski crystal barettes and hair things, as well as designer knockoff purses (not that I would ever buy one of those).  So I have about a half hour to walk around this store without having to figure out a way to stand on one leg, or lift it up bent and rest it on the other.  The important thing is, I never even think of my leg this whole time, not how my shoe feels, or whether my sock is cutting into me, how long I have until the pain pill, not one thing. When this happened, I realized that I am not exaggerating when I say that the pain never goes below a #4, even with three narcotics.  When I had a complete nerve block with anesthesia, on an otherwise pretty good day, well now, those pain faces smiled for quite some time.

“Loosey Goosey,” the blogger of Simple and Well, tells me that someone has gone to some trouble to write a better, more sensible comparative pain scale.  This one has some good points; however, I think it is skewed to the lower side.  According to this scale, #5 is pretty intolerable (like trying to walk on a sprained ankle). Uuummm…okay.    Call me inflated all day long, but that just has a lot more seven-ness than five-ness, for me, folks.  Some of the distinctions made to explain the pain, though, are so clear and so apt.  For example at #6, it becomes difficult to hold a job.  Yes!  So clearly it does.

Without a doubt, if the aim is to standardize the description or definition of pain, then more work remains to be done on standardizing the pain scale.  Being able to describe or define your pain may seem esoteric to you, but if you’re in the hospital, in pain, you may find yourself at the mercy of healthcare givers who are suspicious of your motives.  One thing to keep in mind (I learned this thanks to Cathy, who sent me a very interesting journal article): beginning in March 2012, hospitals will receive large amounts of Medicare and Medicaid funding based on the patient evaluation scores they get on pain control.  That means that the government is requiring hospitals to do a good job at controlling your pain in the hospital.  I’m not even on Medicare, and I’ve been surveyed many times already.  So, whether you use the happy and sad faces, or whatever numerical score you devise for yourself, keep in mind, rating your pain may be vital to you in the future.

Day 290. A Taste of the Last Ten Years

So for the last fifteen years at least, my body has mystified me…and the doctors.  It’s been a time of frustration, worry, tears, and as a result I have become a de facto junior medical researcher, by way of the many sleepless nights in pain spent in front of Google, searching for a reasonable solution to the puzzle of what ever could be wrong with me.

That’s easy to write, even easier to read and dismiss. But in the middle of that great desert of agony were deep mines misery of that looked like this:

A terrible, frightening symptom appears, and it persists.  Let us say it is headaches, and I don’t mean tension headaches we all get (I get those too).  These are headaches that feel as though my head will explode (remember this detail:  it will be important much later).   Screaming, crying, crawling on the floor, vomiting, vision blurring, halo-seeing, temporarily blind, memory stealing, cognitive function stealing, fucking horrible headaches.  Forgive my profanity please, but one bit of advice (my conservative mom!) gave me to help get rid of pain was to swear about it.  

So a general practitioner doesn’t know what to do with this kind of pain.  I probably saw ten or twenty of these doctors.  What bothered me is that as soon as they heard the word “headache,” it was like their ears turned off. Right away, they gazed at me in that sort of suspicious way from under the eyebrows:  they didn’t see a pain sufferer, but rather a drug seeker.  Who could blame them when their professional journals (you know, like the Journal of the American Medical Association) seem to focus so closely on the overuse of opiates (drugs like Vicodin and Percoset)?  No question that people like to pop the Percoset. Furthermore, the average person can easily feel slightly superior to the an opiate addict, who after all is just a stone’s throw from a heroin addict, and may shake hands with one who can’t get some heroin.  

All this judgment is easy…until we need those very drugs ourselves.  I learned that quickly. However, I hadn’t reached that point early on with the headaches. I just wanted help, as in, “Tell me, doctor, what you know that I do not, so that I can get rid of these *(&^%$ headaches!”  Finally, I reached the point where I would start a doctor appointment this way:  “Doctor, I am not seeking opiates from you.  I am here to ask you to help me solve my problem.”…Too bad none of them ever did.  

So, since none of them suggested it–remember, I was a woman in my mid-thirties, a ripe age for “complaining.”  Studies show that younger women and men with the same complaint get completely different responses from many doctors.  Remarkable, isn’t it? None of this is anyone’s fault, though, I’m convinced.  I’m just saying. Since none of them suggested it, I referred myself to a specialist.  

 I had nothing but time, mind you.  I anticipated living to a ripe, old age back in the early 1990s.  There were days when I might have paid to shorten my life, but it never occurred to me that I might have more wisely rushed things along…that I might be writing to you today, with fewer than 290 days left to live.

To get an appointment with a specialist, in this case a neurologist, takes three months.  Frankly, they are the absolute worst of all the specialists: hardest to see, least adept at problem-solving.  Indeed, if the topic here were neurologists, I could tell you the most horrific bedside-manner stories about them. I know better, though, because there must be some great neurologists out there that I just didn’t meet.  I am sure of it.  The system is flawed, though. My point is that it took nine months to see a neurologist enough times to have tests and do a realistic medication trial of a single drug.  Besides, what if I had an after hours emergency, like a drug reaction (that happened several times)?  Forget calling a neurologist. The one time I was fortunate enough to see one through a university hospital, a resident doctor on call answered after hours and tried to help, which was a good thing.  However, a private practice neurologist disturbed on a weekend did answer, but she was extremely unkind about it.  Now, as a result of her unkindness, if I decided not to work with her, then another year of testing and trials with the new neurologist would (and did, several times) pass.  This was my life, through all the specialists, good and bad.  (By the way, I have really great health insurance, through a PPO, meaning I get to choose my doctors, so I was able to do a TON of research before I choose a doctor.  I know of what I speak because I had an HMO long ago, and that was true quicksand.  In that case, I didn’t have the opportunity to do that kind of lengthy research to find the right doctor; I just got whatever doctor was chosen for me: typically that would be “unluck” of the draw.  

The neurology carousel, that troubled system, meant that if I had an unusual symptom, I would likely never find a doctor or a nurse who could help or explain it to me.  If I had an exacerbation of severe days-long headaches, or allergic reactions to medicines at inconvenient times, too bad, particularly if they were outside of the three-month cycle of trying to get an appointment.  Furthermore, the specialists offered few possible diagnoses; if I didn’t have a symptom set that fit into those possibilities, then the doctors were not interested in working further with me to determine the diagnosis.  I never found a doctor that was interested in doing serious differential diagnosis. After all, headache patients are known to neurologists (and other doctors) to be a hassle.  Ironic, huh?

I tell all this because I had so many symptoms that encompassed so many specialties for so long that it baffled everyone I knew–to the point that it truly seemed I had made it all up to be appalling.  

However, this Wednesday, after being sick for all these years, and having had a ruptured aneurysm three years ago, and finally the informal, de facto diagnosis of Vascular Ehlers Danlos Syndrome, I got to see an amazing geneticist, Dr. Clair Francomano, in Baltimore Medical Center (at the Greater Baltimore Medical Center, which appropos of nothing is very chichi).  Dr. Francomano (I can’t believe I’m saying this) was every bit worth the wait. For the first time in my life, someone understood every single one of my symptoms and was able to make diagnoses and solve problems in sensible ways I never thought would be possible.  We met one time.  ONE TIME.  It was long.  Four hours.  That’s long for anyone, but for me, it was an endurance (pain) test.  I didn’t mind a bit.  The whole time, it felt like my body was electric.  It was.  It was plugged into a grid of unbelievable brain power, caring, and intention to help.

Tune in next time for what it was like to meet the geneticist….