Day 215. My Secret Pain Self

You may have noticed that I haven’t been posting quite as much of late.  That has been for two concurrent reasons.  I have been in the middle of writing about how fantastic my phsyical therapist is–because he is really great. Then at the same time, I have been in an existential crisis about how miserable I am because I am in pain and horribly fatigued as a result of physical therapy.

Over the weekend, I was so miserable; I had to miss doing two things I really wanted to do, and I barely un-beached myself from the couch long enough to eat another caramel rice-cake with tofutti cream cheese, honey, and cinammon (my absolute favorite GF, Dairy-free treat…but more than three of those a day will put a girl into two size 22 mu-mus, sewn together, mighty quick).

But I digress, as usual.

I went to PT on Monday and told Mike about my misery.  He was very concerned and jumped right into diagnostic mode.  At the same time, though, he reminded me that I had come in happily last week and announced that my shoulders had never been so relaxed in recent memory and that I thought we were making real progress with this body work.  I do have a vague memory of saying that. Here’s the problem:  When I am in pain, I can only think: pain,pain, pain, pain.  When the pain is over, I can’t remember or describe it clearly (without referring to journals).  Seriously.  He asked me to explain what happened over the weekend that was so bad, and I was hard pressed to elaborate.  It’s embarrassing because it sounds like I am making it up.

I think I have a dissociative response to my pain, to some extent.  On a large scale, people who have a dissociative response are really in trouble, because they are disconnecting from themselves or the world; for example, dissociative identity disorder is the present name for what in the past was known as multiple personality disorder. But a more adaptive form of dissociation frequently occurs to people in something as mundane as, say, a car accident; dissociation from the fright of the situation is gives the person a safe place to stash the self, so people often report having watched the accident occur as though they were watching it on TV. Disconnecting from the whole scene to process the deep and difficult feelings, including pain, may be the safest way for some people–like those of us with very intense feelings–to do it.

Maybe I disconnected one tiny bit of myself that day my parents walked me down the hall of my apartment building and I went to the hospital with an exploded leg aneurysm.  Without any doubt I had the sense of standing above the stretcher where I was lying and watching the radiologist tell me, “Yup!  See!  This is an aneurysm right here.”  And I looked at the angiogram with great interest, as though it belonged to that imaginary patient we always see on television. That dissociated piece of myself has undoubtedly remained….well…split.  And it has a tough time articulating much of anything, particularly pain.  I am sure that is why, on the rotten days like today and yesterday, I tend just to fall asleep.  When that dissociated part of me takes over, I’m not available for talking or thinking much, so the porch light’s off.  Nobody’s home.

There’s going to have to be a whole chapter on physical therapy in my book.  It’s complicated.

Day 230. A Bump in the Road

Still Life With Pucker

Warning for the faint-hearted:  this entry is all about whining, and not the good oak-y kind from Sonoma.

 

Doing my best not to be disappointed about being absolutely miserable from the drive back home the beach.
It was one of those miserable trips up the East Coast, an accident here, a detour there (How did they justify simply blocking off the exit ramp to 95 N in Va. Beach on the Sunday of Spring Break weekend, for instance?).  By hour two, I had already chewed my mother’s head off, and it took well into the sullen hour three and a half to realize that I was ready to gnaw off any one of my limbs to deaden the pain.
Fuck.
We left for this trip on Thursday.  Arrived Thursday night.  Thursday night I was up all night in this kind of pain.  Riding in the car makes me crazy with pain.  I thought this time would be different because I have a potent muscle relaxer I didn’t have before. Ha!  That muscle relaxer laughed at me and my pain.  So, Friday was not fun (compounded by the fact that it was a rainy day).  But I didn’t complain.  The foul weather was pretty.  There was the puzzle with the family.  Etc., etc.
Every time I go to the beach I have another reason to think that This Is The Time It Will Be Different.  But every time, riding in the car for five hours (which is the duration of the trip when the traffic gods smile on us) puts me into paroxysms of pain.  What is to be done?
This feels like an enormous bump in the road.

Travel seems like something I can’t live without.  When have I not traveled? My earliest memories are in Spanish, when I was living in Argentina.  I have been to many places in the Americas, the Islands, and some in Europe.  That is so little of the world. I was planning on traversing so much more of it: Asia, Eastern Europe. But right now, I’d be happy to make a car trip, say, to southwestern Virginia (on the Tennessee border), to visit my little brother at Emory & Henry College.

Oh puhhleeze, Heidi.  There’s more than just a hint of the whinge here. In my defense, though, it feels to me as though I whine the best and most when I am problem solving.
I want to be able to take my older brother on a trip for his 50th birthday, but what good will I be if I can’t travel?   If I force myself to travel under present circumstances, I may ruin everyone’s trip.
Mike, my phenomenal physical therapist, educates me about the neurochemistry of pain.  He says that if you have chronic pain, at the spinal cord level, your body’s neurons can misfire.  Rather than firing up toward the brain, they fire backward, releasing neurotransmitters back into the synapses in the body, which creates a hypersensitivity to pain. The more the body floods with those neurotransmitters, the more the entire makeup changes. Of course, my explanation is grossly oversimplified, and only one part of what happens, but it is an important part of the explanation.
However, the good news is that these synapses, or connections between the neurons, can be completely rewired in seconds, minutes, or hours, which means that the pain response can be entirely different by the end of the week.  In other words it is entirely possible for you (or me) not to have any more chronic pain by Sunday.
Some fascinating recent research demonstrated that patients with chronic pain in abdominal muscles lit up numerous areas of the brain in a functional MRI that shouldn’t have been lit up when they tensed those muscles. SO, when their doctors explained this pain response to them for three hours in just the language I used now, and then asked them to tense the same muscles, the functional MRI showed a dramatically improved response.
The theory behind this doesn’t argue that this is a “mind over matter” transaction, but rather that knowing, intellectually, that this process exists can help rewire the body’s neurotransmitter response.
The idea is to un-learn that pain is a threat, which is counter-intuitive. For me, that has been difficult:  I am too good a researcher and am capable of imagining precisely what sort of danger this or that pain could be.  However, I’m working on that and have it down pretty well. So this week, when suddenly my right wrist just hurts and is swollen for the first time, I’m just pissed off, rather than worried (C’mon, man, it’s my writing hand!). Clearly, it is some dumb Ehlers Danlos thing; what a massive inconvenience now to have to wear a brace for a week. But, I can’t let those neurotransmitters get me down.
I don’t know how far this will get me down the road, whether it will take me far in terms of travel downstate, cross-country or cross the pond.  I wish I had some ideas about that.  I’m hoping those issues will resolve themselves with my new resolve.
What is your bump in the road? What are you overcoming?

 

 

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….

Day 347. Pretty in PEMF

So my mom and Nathan watch the local FOX station evening news, and I happen to admit that because they called me the other night to say that Dr. Oz had been on to promote the next day’s show.  The topic was to be a patient-controlled device that seems to be quite successful in treating a number of health concerns, but particularly chronic pain such as headache, backache, and nerve pain.  Yes, please.

So, that was one Dr. Oz episode I TIVOed.  I was so excited about the topic that as I watched the show, I did more internet research than pay attention to the commentators.  Do you ever do that, and wake up from your internet dream only to discover that the whole show is over?  If you have a DVR, you can rewind it, but the time you set aside to watch it has passed and there you were, foiled by the time suck on your lap.

Well.  So, I learned that PEMF, or Pulsed Electromagnetic Field Therapy, has actually been around since the 70s, and received its FDA approval in 1979.  (To be clear, this has nothing to do with the ordinary refrigerator type of magnets sold fallaciously as headache and arthritis cures; it’s a different type of magnet.)  The device is frequently used in the field of orthopedics for things like broken bones that won’t knit and arthritic pain.  Also some rheumatologists and physiatrists (pain doctors) are experienced in treating soft-tissue wounds as well as suppressing inflammatory responses at the cell membrane level to alleviate pain and increasing range of motion.

The device(s) (by various makers) seem to have been studied extensively over thirty-odd years — although I did note among the 40 and 50 abstracts I read that none seems to have investigated in a large study group of beyond, say, 50 subjects.  But studies seem to prove in small groups that PEMF Therapy can treat acute pain dramatically well, and chronic pain as well, but somewhat slower.  This has been my experience so far exactly.

Here’s what it looks like:

These machines have one major disadvantage, and that is cost: at present, insurance doesn’t cover treatment, so there’s no $25 copay/visit, and even if there were, at the very least one should be treated three times weekly.  Ideally one would be treated twice daily.  At $25 a pop for copay, the cost would immediately be out of most of our reach (and who pays a $25 copay anymore?).  If there is any good news, it is that some of the machines are now made for home use. Thus, rather than costing $25,000, they cost between $3000 and $5000, which still puts them outside of most of our reach. We can gather, though, if the insurance won’t cover a copay, they certainly won’t cover the purchase price of the machine.

One company, iMRS, figured out a way to let desperate people try the machines.  They rent a brand-new machine for $500/month (with a refundable $1000 deposit on the credit card).  We can rent as long as we like, and if we decide to keep it, all the rent (and deposit) will go toward the purchase price (which is close to $4000).  The cost is still outrageous, but for someone who is desperate (and potentially has only 347 days left on the planet), all money starts to look like the gold-colored five hundreds in Monopoly:  imaginary.

That last argument not holding any water, my Mom and Nathan helped me rent it for a month.  Let’s see how it goes.

Here are a couple of other parts of the machine:

So far, it hasn’t afforded the miracle cure I’ve been hoping for.  I would say, though, that it is fairly miraculous on acute pain, like the headache I wake up with three times weekly that I mention in the probe video, a feeling like someone is cracking open the bridge of my nose and then chopping it up in pieces.  If I run the probe over the offending areas for the prescribed 16 minutes, the headache will be gone afterwards (rather than taking a day, or more, of extra narcotics to try to treat it).   Similarly, it can help sometimes with arthritic pain that pops up as well.

Karma is sweet, though.  Nathan has had a shoulder injury for many years from parachuting from a plane.  He’s a tough guy and doesn’t take any painkillers or complain, but he says he hasn’t slept well for as long as he can remember, and putting on coats and things have been impeded from his range of motion.  I put Nathan on for one eight-minute treatment for chronic pain.  He didn’t feel much different immediately afterwards–and he was pretty skeptical about the device. However, he called me the next day to say that he slept better the night before than he had in as long as he could remember.  And even more compelling was that he had just about 100% range of motion back, which he hasn’t had in lo these many years–since a few years after the injury.  It couldn’t happen to a nicer guy, frankly.  He deserves it!  (He’s coming back for regular treatments now, to make sure the treatment “sticks.”)

Now, here is the controller:

There are so many settings–and I have just as many ailments–I have had some trouble choosing the proper setting to use.  My brother suggested choosing the most painful thing for me, the neuropathy, and empirically pursuing that for the next month. That sounded reasonable, so that is what I mainly do, for 1-2 hours daily (except when I need to treat acute pain). I’ll let you know what I find out.

Any lower back sufferers out there?  $20 a pop; meet me in my guest room!  (By appointment only)

Day 351. Paint Your Pain

Heidi's Pain

It’s not arts-and-crafts day at the loonie bin.  Rather, Dr. A. Suggested that I paint my pain.  (That sounds a bit like self-contradiction, but just never mind).  He mentioned it before, but I could only conceive of it in abstract terms:  how will I draw pain?  What does my pain, the thing, look like?  I have no idea.

Finally, he showed me a drawing someone else had made for him in his office.  It was terribly disturbing, a person’s body with pain on it, and the dreadful, sad colors that one would expect with pain.  I finally understood (a little dense, I am, since the aneurysm).  The painting could be of me in pain.

I went home and tried to write what I saw in my head:

With closed eyes, I see
     zig-zag lines of electricity
       over my body from above
I’m on my knees, facing
     downward, with my arm back,
like a Thanksgiving turkey,
     with emaciated drumsticks
     and wings that swell up 
              and turn bright red
                   to the horror of the guests

Knowing this of me, you probably are thinking it is better I missed Thanksgiving dinner at Melanie’s.

Well, so then I painted my crazy picture, which is remarkable for a few reasons:  first, it’s a second draft, meaning that before you laugh at it, consider that the first was the really juvenile one!  Second, as I look at it with a few days’ distance, I wonder why I chose those colors.  It seems like I should have chosen dismal, disturbing colors, not bright cheerful colors, as though to say, Hi, peeps, isn’t pain just swell?  Third, if I were to include text, wouldn’t it make sense to write the words large enough to read (it’s easier to see them if you click on the picture and see it in a larger size); safe to say, though, that this is not a piece that reflects the artiste in me.

Still, it was a cool assignment.  Dr. A (as in Dr. Philip Appel) is a killer, amazing psychologist at the National Rehabilitation Hospital, who specializes in patients who are managing chronic pain brought about by chronic illness or disability.  He is so good that you almost should get a chronic illness just so that you can go see him.

Anyway, Dr. A. mentioned that at least part of the strength in painting one’s pain is that it allows us to experience the pain as something outside our body, a step towards stepping outside of the pain.  I like that possibility very much.

I wonder if this means I should take the painting, shred it in little pieces, and burn them in effigy tonight…