Disability: The Problem of Pain

[Content Note: Chronic Pain, Medical Professionals]

I have chronic back pain. When I was fourteen years old, I was diagnosed with scoliosis and I underwent spinal fusion surgery. Everything seemed to go reasonably well, and I healed up about as well as was expected. I grew up, became too old to continue my yearly check-ups at the children's hospital where I had been treated, and on paper I became a perfectly healthy adult.

Except for one little problem: I hurt all the time.

It started out with minor aches and pains in my neck and back. Each time a pain popped up, it was named and given a reason: My back hurt because I'd sat in that uncomfortable chair Tuesday, and I wouldn't do that again. My neck hurt because we'd sat too close up to the screen at the theaters last weekend, and I'd remember that for next time. My back was sore because I'd swam too hard at the school pool, or because I'd taken the bumpy country road when I got lost coming back home that weekend, or because I'd sat for just a little too long watching TV and I needed to remember to get up and stretch more often.

Sometimes I hurt so much that I couldn't get out of bed in the morning. I couldn't walk without tears of pain streaming down my face. I needed a cane at the age of twenty-one just to get to class. These were the bad days. Most of the time, though, the pain was simply a constant companion, something that I almost didn't notice after awhile, and something that always had some reason at the base of it. I needed to be more careful. I needed to take more precautions. I needed, in short, to be psychic: to anticipate and avoid every conceivable source of pain. I would be more careful next time.

Of course, I wasn't completely blind to the suspicion that something might be wrong, or at least more wrong than just my being delicate. I went to doctors -- quite a few of them in fact -- who took x-rays, ordered tests, glanced at the results, and threw pills at me until I went away. (Metaphorically speaking, of course.) But the pills rarely helped, and frequently came with side effects that made things worse: one round of medications kept me from sleeping for five nights in a row before I stopped taking them altogether.

The medical records I have from that time period -- records I later requested under various government disclosure rules -- piece together a picture in which the majority of my care providers didn't seem to take me seriously. Several doctors noted that I weighed more than they would have liked, and linked that weight to my constant back pain: my spine was presumed to be too delicate to handle a few extra pounds on my frame. My weight was not, in retrospect, surprising given that the slightest physical activity that would raise my heart-rate would also confine me to bed for days afterward, but this was apparently not the doctors' problem.

At least two doctors made notes in my file that I was "depressed" and that I "cried during visit". I remember the crying, and I remember the cause very clearly: I broke down in tears after eight visits in one year because I was in constant pain and the pills weren't helping and I just wanted it to stop. But during that visit, anti-depressants were added to my repertoire of pills, because a crying woman in the office meant that her serotonin levels were clearly out of whack and medication was needed. The anti-depressants didn't make me feel better about the constant pain, but they did cause me to faint five times in one particularly hot summer. I stopped taking those, too.

When I moved back home after college, I had the extreme good fortune to learn that a dedicated scoliosis center had opened up within an hour's drive of my house. I gathered up my courage and my x-rays -- years and years worth of x-rays and CT scans -- and made an appointment. I fully expected to hear more of the same: nothing was wrong with me, the surgery had fixed everything, I "shouldn't" be in pain. (No one ever said it was all in my head, just that I "shouldn't" be in pain. Conclusions were drawn.) I was prepared to finally accept this, if that was the diagnosis.

The scoliosis specialist greeted me warmly. I told him my story in as few words as possible, aware that his time was valuable and embarrassed to be taking up so much of his with my constant imaginary pain. He put my x-rays up to the light and made that "tsk" noise that doctors like to make. He said, "I can tell you exactly what is wrong with you."

At that moment, I wanted to embrace him. I wanted to hug him and tell him that he was the first person, ever, to seriously conclude that my pain wasn't imaginary. I wanted him to know that he was a good doctor, the best doctor, and that I was forever grateful. I wanted to cry.

He continued, "...but I just can't understand why no one has noticed this before." That last question is a question that I can't answer. When he showed me the problem -- that pseudoarthrosis had occurred and that my childhood surgery hadn't properly fused all the vertebrae that needed fusing -- it was as clear as day on the chart. I could see it myself, once he showed me what to look for. I've since shown the x-rays to friends and relatives, and once I tell them what to look for, they see it immediately. Why did none of my other doctors see what is one of the most common failures of spinal fusion surgery? I don't know.

I haven't yet gone back to my doctor. The only real solution is to go in for another surgery -- the same surgery as before, really -- and redo the fusion properly. Medical science has changed in the last decade; they're confident that they can fix the problem. My daily struggle with pain will probably become a lot easier... but of course, no one can ever say how much of an improvement there will be. I plan to go in for the surgery someday in the next couple of years, but it's a lot to wrap my head around -- they tell me I will be out of work for at least 12 weeks. That's 3 months. That's a season. A whole season of my life. It's a lot to mentally work out.

In the meantime, I still struggle with pain on a daily basis. The pain is easier because now I know it's not just in my head. At the same time the pain is harder because now I know it isn't just going to go away on its own someday if I try hard enough.

The worst part about chronic pain is the guessing games. There's the preparatory ones: Can I go to the movies today or will I pay for it later? Can I go bowling with the group or will lifting the balls throw out my back? Can I go on this road-trip with Husband or will it leave me flat on my back for three days? This is basic Spoon Theory stuff, and chances are you already know it. (If you don't, read it. It's the best-written treatment of chronic pain I've ever read. You will weep.)

These preparatory questions are also rather easy ones: the answer is always, "no, you can't go unless you want to pay for it later". The question isn't really to determine the answer (the answer is always the same), but rather to judge the decision: do I want to pay the spoons for this activity? Can I afford to? The questions provide a degree of control: you're deciding to buy a pleasant or necessary activity, and you're expecting to pay with pain. It's the questions that come in the wake of pain that are the hardest: the analysis and explanatory ones.

When pain first starts, the analysis questions kick in: Where is the pain? Upper or lower or in-between? How bad? Sharp, stabbing, dull, throbbing, 8, or 9, or 10, or more? What hurts the most? Sitting or standing or walking? Can you get to work? Will the hot shower help? Will Icy Hot or pills or muscle rub help? Will the kinks work out over time? How bad is it really? Are you crying because it hurts or because you're frustrated? Can you get out of bed? Can you walk it off?

The analysis questions are important because they help you come to grips with what you can and can't do to minimize the pain, and what steps you have to take. They will also be asked of you by everyone you encounter during your pain, so it's best to have the answers straight in your mind beforehand so that you don't ramble on for hours. (You are, after all, nothing if not a polite person with chronic pain.) The analysis questions are also infuriating because as much as you understand why the analysis is necessary, it's also essentially unfair to ask you to categorize and pigeon-hole something as awful as pain. You don't want to describe the pain, you just want it to go away, and right now. Asking yourself to give it a label is asking yourself to acknowledge that it's going to be around long enough for the label to be necessary.

When the immediacy of the pain is past and the analysis is complete, the explanatory phase sets in. The pain absolutely must be cataloged and explained. Your brain will not rest until you know what, precisely, caused the pain so that you can avoid it again in the future. The cause is not "because I have pseudoarthrosis". That is not a cause your brain will accept. There are low-pain days and there are high-pain days and you believe -- because humans are creatures who look for reasons and explanations in seemingly random patterns -- that there must be a difference in your behavior and surroundings that can account for the differences in pain. And even though you know you shouldn't, you hold tightly to the belief that somehow you can deduce the precise behaviors necessary to game the system in your favor: you, too, can have a pain-free existence if you just try hard enough.

What caused the pain? Is it your desk chair? The couch? The bed? (Dear gods, don't let it be the bed. We just got one of those expensive ones six months back, don't let that be a waste.) Did you swim too hard last weekend? Play too long on the computer without stretching? Did the walk you took around the neighborhood yesterday evening wear you out? Was it the car? The grocery shopping? Did your physical therapist massage you too hard in your session this week? Not hard enough? Could it be the toilet seat? (Maybe we should get softer ones, like those cushion-y things that Bob installed in his house?)

Maybe you need to start yoga again? (It hurt last time you tried, but maybe if you stick with it long enough you'll have a breakthrough and everything will be lovely forever.) Could you try a different sleeping position? Can you try sleeping on your stomach or your back or your sides? Maybe you should try to wake up every few hours and readjust your body into a new position? Would more hot baths help? Should you go back to the doctor and get another x-ray just in case something has deteriorated inside you? Will the visit be worth the $400 price tag? What if they don't find anything? What if they do?

Do you think it's the heat? Or maybe the humidity? If you hold on until the weather changes, will the pain go away? Is it from picking up the cats -- are they getting too heavy to lift? Is it the hard tiles on the kitchen floor? Was is the yard work you helped Husband with last month? Is it your bra? Your shirts? Your jeans? Do you need to buy looser clothes so that they don't irritate your back? Maybe your shoes aren't spongy enough anymore, should you get new shoes? What about your pillow? Is it supporting your neck properly?

I could go on for pages. I'm not making any of these questions up: when I have a major flare-up, these questions swirl around my mind endlessly, over and over, for hours. Until the pain ends, really. Relatives and co-workers will each ask the same question: "What do you think caused it?" It's an innocent question, but it's the question that torments you for hours and hours because if you could just somehow pin-point what caused the pain, you could avoid it. You could make the pain stop. 

It's a fantasy, of course. You can't make the pain stop because you have a bad back. But it's a fantasy that has dangerous roots in reality: some chairs and some beds and some activities and some pillows do make the pain worse. And some make the pain better. When you are lucky enough to identify a problem and solve it, the chronic pain improves... at least for awhile. But it's an endless race, a constant parade of pounding questions that can be just as bad as the pain that triggered the avalanche of doubts and worries.

The problem with long-term "pain management" isn't so much the "pain" part. The pain is bad, no doubt, and it's the root of the problem. But the "management" part is the part that will drive you in mental circles for hours, searching for some perfect key that will make everything better. And I honestly don't know if the "What do you think caused it?" question is a question worth asking... but I know it's a question that so far I haven't been able to stop pondering.

Update: Re-reading this, I realize I haven't explained why I wrote this. I don't want people to read this so that they'll feel sorry for me and send me stuffed animals in the mail, but rather I wrote this because I hope that other people in pain might read this and recognize the "questioning" urge as natural but not imperative -- essentially, you're not alone. :)


Personal Failure said...

I am so blown away. I could write that myself. The doctor's visits, the sneering diagnoses of depression or drug addiction, getting my hopes up with each new doctor only to hobble out of their office crying when they, too, didn't even want to try.

Although, in fairness to my doctors, I have a form of porphyria, and nobody in their right mind is looking for porphyria. I diagnosed myself watching House. (Seriously, that thing about the pee turning purple is true. Which led to a hilarious scene in which the nurse accused me of bringing in koolaid and I challenged her to drink it if she was so sure of that.)

I play a little game with myself because the Vicodin doesn't work and my pain is deep in my nerves and nothing's every going to make it better. My little game is this: I wake up in searing agony from head to toe. Ever touch a stinging nettle or get stung by a bee? Like that, from the top of my head, my eyes, my mouth, my neck, my genitals, the bottoms of my feet. Maybe I overdid it yesterday, but what's overdone today isn't always tomorrow or yesterdays' overdone. Mostly, it's random.

So I play a little game to keep myself from thoughts of self harm: it's the weather. It's too humid, it's too hot, it's too cold, it shifted too quickly. That's what it is. Tomorrow will be better. Just get through today. Just today.

It helps.

I hope your surgery works. I do know someone who had this same problem and had the surgery and she was like a whole new woman after 4 or 5 months. She had some lingering pain, but not nearly as much as before.

Ana Mardoll said...

*internet hugs*

Personal Failure, you are my honest-to-god personal HERO for daring a nurse to drink your urine. I am so timid, I probably would have just ducked out of the office to "get my phone from the car" or something and never gone back. (That's how I escaped a really scary chiropractor once, anyway!)

I'd never thought of the popularity of House (and maybe CSI and other "science" shows) helping people to self-diagnose -- that's awesome. It's very frustrating to me how often doctors seem to succumb to the numbers problem and just focus on medication and getting people out of the office as fast as possible. :(

Hannah M said...

This was a wonderful post to read. I've lived with rheumatoid arthritis for at least the past seven years - I was diagnosed in 2004 but I'm sure I had it for years before that, because by 2004 I had literally forgotten that it wasn't normal to be in pain all the time. I'm still searching for the right medication to help manage it. As it is, I find myself constantly finding ways to explain flare-ups... I moved too much yesterday, I didn't move enough, I ate the wrong food, I didn't get enough sleep, I'm stressed, I need new shoes, I need a new keyboard... Your bit about the "management" part being the part that will drive you crazy is absolutely spot on.

Personal Failure said...

I'm pretty timid in real life, too, but she was going to throw it away. The thing with the purple pee is that you have to get the pee during an active episode and it's difficult to do. (Pain not particularly = active episode.) I was afraid I was going to have to be peeing in clear glass cups for the next few months and then swirling it around in bright sunlight to get it again. Who wants to do that?

Personal Failure said...

I'm right there with you. In my case, as I said, the explanations are sanity-preserving. "Tomorrow will be better because today is just the weather."

And managing it is a complex formula because "too much" is highly dependent on activities over the last few weeks, sleep over the last week, stress level, how recently I had a cold, etc. So I can do something today that was fine last week, but tomorrow I learn it was too much. It's exhausting.

Redwood Rhiadra said...

I had this kind of trouble with my Crohn's. When I was around 15, I started getting symptoms - blood in the stool, pain in the gut, etc. - that would last for a few weeks at a time. My mother took me to various doctors, and all they said was "eat more fiber", so I got lots of salads and Fibercon pills. Which didn't help, of course. Eventually, I lost enough blood during one of these episodes that I collapsed at the end of the school day. We had just moved, so I was taken to a new doctor, who did some tests and *finally* we knew what the cause was.

Unfortunately, there's no cure for Crohn's. Some drugs help alleviate it for a while, but it always comes back, and all they can do is cure whatever problem *this* episode is causing (surgery to drain abcesses, surgery to cut out malfunctioning chunks of the intestine, surgery to close the artery just popped by an ulcer).

And of course many of the symptoms are fairly normal anyway - a touch of indigestion, or what feels like gas pains. Sometimes it *is* just indigestion, or gas, and it goes away. So every time it starts up, you start asking yourself if you really need to go to the doctor, because he'll order a CT scan, and a colonoscopy, and a bunch of other *really* not fun tests, most of which require at least one and sometimes two days off of work. So you just hope it's not a bad episode and put off that visit...

I've guessed wrong twice.

Kit Whitfield said...

Preach it. 

Ana Mardoll said...

Redwood Rhiadra, *internet hugs*. I've had both a CT injection scan and a colonoscopy and they were DREADFUL. I would hate having to figure out "do I go again?" or not. :(

Karen Nilsen said...

Internet hugs to all of you.  It breaks my heart--and makes me incredibly angry at our medical establishment--to read everyone's stories.  My mother had undiagnosed rheumatoid arthritis for years--one goofy doctor she went to even tried to put her on hormone supplements because they would make her "a happy camper" again,  according to him.  Of course anything that goes wrong medically for a woman has to be related to estrogen somehow, right?!   Finally, one evening in a bout of pain, she went to an emergency care clinic, and the doctor there thought to do the blood test to diagnose rheumatoid arthritis.  By that point, it had progressed to the severe phase because it had taken so long to be diagnosed.  If just one of those doctors she had gone to before (one was a joint specialist no less) had recognized the classic symptoms of RA and thought to do a blood test . . . .

Anyway, thank you, Ana, for your bravery and your post and thanks to all of you for sharing your stories.

robotxorange said...

Thank you for this.

I've been struggling with health issues since I started college four years ago. I've always had what my grandmother described as a 'nervous stomach,' but things sort of spiraled out of control once I left home. My touchy stomach has been explained away as IBS by my doctors, and the only suggestion was to get more fiber in my diet (which I found out the hard way that I REALLY don't need) and take muscle relaxants when I experience cramping. It's taken 4 years of near constant physical pain, muscle tightness, depression, anxiety, insomnia, and dreading every single meal, and dozens of different doctors and specialists before anyone could give me a legitimate answer. My current chiropractor explained to me on my first visit that I'm most likely suffering from fibromyalgia. The problem is that many doctors still don't even believe FM exists, on top of the fact that there is no single cause and therefore no single cure. I experience all of the symptoms typically of FM sufferers; my heightened sensitivity to pain and pressure means that even a light tickle fight will leave me in agony for a few minutes, my muscles tighten at the drop of a hat, so I struggle to do any strenuous activity, and any increase in tightness in my lower back leads to intense indigestion, cramping, and so on. Every meal has a 50/50 chance of rushing towards the back exit like a freight train and leaving me moaning and sometimes even crying in the bathroom for an hour, even if my back doesn't seem to be acting up at all. My luckier days are the ones when my meals only make me nauseous or cause my stomach to bloat up like I'm 8 months pregnant (not exaggerating). And when I don't feel it in my back, I feel it in my knees, in my shoulders, in my neck, and sometimes even my wrists and ankles.

And there's no bargaining. There's no system. I have no way of knowing what's going to set me off today, or tomorrow, or next week. And there's no consistent method of reigning in my body. It's just been trial and error for years now; seeing my massage therapist weekly when I can afford it, and trying to make excuses for my strange eating habits and why I dread eating at any restaurant I've never tried before. I take multivitamins, extra iron, extra b12, probiotics, on top of the meds I take for my allergies and my hypothyroidism. I've tried yoga, acupuncture, Chinese herbs, meditation, tai chi. I stretch on a daily basis in the hopes of pushing my base level back towards that of a healthy, 'normal' person.

I feel like I'm constantly making excuses and trying to make sense of it all to other people so I don't just come off like a botched science experiment. It sucks so much sometimes. And I'm only recently coming to grips with the idea that I might never get to the point where I don't hurt somewhere. It's so discouraging. But it's easier knowing so many others out there struggle with chronic conditions. So again, thank you.

And sorry for the wall-o-text. I got a little gush-y. ^_^

Bayley G said...

I'm just starting on this path (I've had chronic knee pain for about a year now, diagnosed but mostly untreated) and already this post feels so true. I'm sitting here going "yep, yep, yep"; it really doesn't help that I've always been a large person so many doctors feel justified saying "Lose weight and it'll go away ^_^" and then sending me off with vague notions of ibuprofin. 

http://www.youtube.com/watch?v=2Qdz1uEX2uY was my attempt to explain

Ana Mardoll said...

robotxorange, *internet hugs*. Don't be sorry for the "wall-o-text", it was a good post and my heart goes out to you. That sounds really dreadful. :(

Bayley G, if you haven't already found the wonderful relief that is the Fat Acceptance movement, I highly recommend it and can recommend some extremely good books. There's a large body of evidence that fat doesn't cause many of the problems that are attributed to it (and is in fact a *symptom* of some of the things it supposedly causes), but when a fat person goes to the doctor with a problem, the doctor is likely to reflexively blame the fat person and not look deeper. Your video is so true. *internet hugs*

Nathaniel said...

Jesus. H. Christ. What the doctors did is just shameful to the profession. Oh, you shouldn't be in pain. Its not like we could have done anything wrong!.

The callousness of it all makes my teeth ache. So sorry you had to go through that. 

Nick the Australian said...

Have you considered a lawsuit? Malpractice or some such thing, against the doctors who kept misdiagnosing you?

Ana Mardoll said...

Just me or in general?

I can only speak for myself, but I doubt in my case the lawsuit would be successful. No doctor ever told me the pain was all in my head -- they told me that my hardware (the rod bolted to my spine) was in good condition (true) and that I shouldn't be in pain (true, from a certain point of view -- the surgery "shouldn't" have gone wrong). Nor did any doctor say "you hurt because you are fat", but rather that losing weight "might help". Depression meds were dispensed because I "seemed depressed" and I rather imagine I *did* seem depressed, what with hurting constantly.

The medical profession seems very well insulated against lawsuits, and sometimes I think my doctors had more training in "weasel words" than in, say, spinal x-rays and how to look at them.

However, I genuinely don't think these were bad people (although they are definitely bad doctors). Your average general practitioner gets a few months on every possible aspect of the human body, right? It stands to reason that they wouldn't necessarily be able to diagnose everything ever, and the job must be overwhelming at times. Still, I wish they'd learn to listen to patients and say: "I believe that you're hurting, but I have no idea why." The next step after THAT would be to *discuss* whether or not to spend money on specialists, whether to fight the symptoms with medications, etc. But we're at this point where doctors don't feel comfortable saying that and it's frustrating because all this "you seem perfectly healthy" brings on a LOT of self doubt.

depizan said...

There's no cure for Crohn's, but illiostomy surgery, oddly, seems to end flare ups for at least some people. I say this because I'm one of them. It's been nearly eleven years since Crohn's tried to kill me (intestinal rupture is so much fun) and I might as well not have it. Of course, I don't know if I would have opted to have an ostomy if asked - I woke up with one after the surgery to fix the rupture, because reversible iliostomies were seen as a way of letting your bowels rest (or something). But I'll take an ostomy over being in so much pain I couldn't even sit up. I never, ever want to be that sick again. I don't think I could deal with being in your situation, always waiting for my life to come to a stop and become a nightmare again. (I struggle with panic attacks over normal stomach bugs. Being horrifically ill for a year does that.)

chris the cynic said...

Your average general practitioner gets a few months on every possible aspect of the human body, right? It stands to reason that they wouldn't necessarily be able to diagnose everything ever, and the job must be overwhelming at times.

While that is certainly true, it seems like they should at least be expected to brush up on things that obviously might be wrong.  In some cases they don't have a clue and thus it really is every possibly aspect of the human body, but in your case they had a giant flashing clue light going off**.

Apparently that was enough for them to check the hardware, but not look into it more deeply.  It seems that what should have happened, before it even got to your proposed thing of discussing whether going to a specialist would be worth the money, would be for them to review information about what can go wrong with your condition and surgery, examine you/your medical records with that fresh in their mind, and then see the obvious problem that they all managed to miss.

I'm guessing that part of the reason this doesn't happen is that the way we've set things up doesn't give general practitioners enough time to do that, but in that case they should definitely jump to the, "I have no idea what I'm talking about, have you considered seeing a specialist?" long before they get to, "Well you shouldn't be in pain, let me give you boilerplate things to do which are unlikely to help much."


*Though it should be noted that giant flashing clue lights are occasionally false alarms and for that reason over reliance on giant flashing clue lights can also lead to doctors missing obvious things.

Amarie said...

I believe that I’m coming in late and well…unnecessarily. Personally, I don’t have any medical stories or chronic pains to share.
But, I’d like to give a true bow of admiration and respect to all of you that are sharing your stories here. It takes quite a bit of bravery and strength to come out and talk about things like this that can be painful in more than one sense of the word; it takes even more to come out with that story with a purpose of making sure that people know that they’re not alone in their strife. The comfort and support gained from that knowledge can be immense and healing in and of itself.
I commend and respect all of you. *gives one big, giant, hug to everyone*
And, Ana…can I ‘contemplate violence’ for those previous doctors of yours, or offer them purple Kool-Aid? Pretty please with a cherry on top? It’ll make me feel SO much better. : )

Ana Mardoll said...

Amarie, only if you're prepared to contemplate so vaguely that I call you out for poor characterization! :P

Amarie said...

Haha! Deal, Ana! :D

Kristy Griffin said...

Thank you for sharing this.

For myself, I don't have any major chronic pains, so I won't pretend that I can relate to what you've gone through.  (I have, however, come to the conclusion that even when it comes to minor irritants, doctors tend to be pretty useless when it comes to making the problem go away.)  (I also kinda had my faith in the medical profession shaken a wee bit when, prompted by my mother, I finally screwed up my courage and tried to talk to my doctor about the possibility that I might be clinically depressed... only to be told "You're not depressed!  You just feel bad because your life sucks!"  Thanks for that, doc.  Seriously.)  One of my coworkers, however, is in a constant running battle with her doctors.  She pretty much hits all the high points: doctors telling her it's all in her head, doctors blaming her weight for the problem, pharmacists refusing to give her pain meds because they think she's a potential addict or dealer, you name it.  Every week there's a story of some new unbelievably callous behavior on the part of her health care providers, and I can only shake my head in amazement and disbelief.  

It's just good to know that other people see the same thing.  (Well, no, now that I think about it, it's the opposite of good.  After all, I don't want this to be happening to one person, let alone lots of people!  But I think you know what I mean, so I'll stop trying to explain it before I get even more awkward.)

mmy said...

Best wishes at you about the pain/surgery.

And hugs to everyone on the thread.

My own chronic pain story....
After major abdominal surgery I found out I was allergic morphine (fun time to discover that) and the pain killer that I wasn't allergic to had the major side effect of skin reactions that looked like fungus and hurt like hell. I have a high pain tolerance level so -- I just didn't take pain killers.

A few months later at a follow-up with my GP I asked in passing "so, when does the pain finally go away?" and was told that it should have disappeared long ago. 

GP sent me back to surgeon who checked me out and after double-checking the problem wasn't surgical sent to to avery specifically to a particular pain specialist. (Note: I was a colleague at a major US university so may have been treated better than most in these circumstances.) 

I am "one of those people" who get the wonderfully named "phantom" pain -- once the pain receptors get turned on they don't turn off. My pain specialist didn't treat it as "hysteria" or "in my mind" -- he was fascinated in it as a as yet under-researched area of medicine. We worked together to "managed" the pain.

The bottom line is, apparently, that modern medicine basically sucks at any form of pain management that doesn't simply sedate the patient and make hir incapable of working. I get some relief from a TENS machine but many other people do not.

I think that one of the problems is the way in which pain has been intertwined with gender essentialism/expectations. Since men are perceived as"tough" when they express pain it is  taken seriously. Since women are perceived as weak and hysterical their pain is undermanaged and not taken seriously.

storiteller said...

I'm so sorry for everyone who has had to go through this.  I have random flareups of annoying symptoms (mainly  sinus-related), but nothing that's consistent pain, so I can't pretend to know what it's like.  But I do know a high-school friend who has fibromyalgia, and it's devastating to read her Livejournal.  I don't treat my body as well as I should - too little sleep, too hard at exercise sometimes - so I can't imagine every single day and every action being the guessing game that you describe. 

RP said...

This is very much my experience with IBS.  The "what caused this latest unpleasantness" was sort of useful when I was first addressing it - cutting out meat and dairy and learning about the difference between soluble and insoluble fiber - but now it's just frustrating.  I'm pretty stable now, but sometimes all the walking and yoga and soluble fiber and water can't prevent a flareup.  And while it's stress-related, you can't berate yourself to relax!

Greyduck said...

Thanks for this. I have chronic pain, some due to arthritis (and I'm still in my 20's), probably fibromyalgia, some is a mystery, and it's rotten. I appreciate that you've really explained it well, so I can refer my spouse here to help hir understand it all.  If only doctors were better at saying, "Huh. I don't know, but here's how we can find out more." Maybe I'll send this to my doctor-in-training friends and hope they share it and learn something.

pencilears said...

oh back pain,
I spent the better part of highschool with searing shooting pains down my left leg that my GP did not believe were real, I was sent in for a pile of what I can only describe as unnecessary, expensive, and highly embarrassing pelvic and spinal x-rays only to be told everything was all in my head. "kids your age don't get sciatica"

it took web-md to tell me to get my wallet out of my butt pocket and slowly things have been getting better, but I blame sitting unbalanced for years combined with a shortened left shoulder due to an un-set collarbone for the fact that I'm still fucked.

spent the better parts of January 2011 to May 2012 alternately incapacitated by pain and trying to recover. in January I slipped on ice and fell on my ass walking down a hill and then attempted to take stone lithography which taken together slipped a lumbar disc and threw me into worse sciatica than I had ever experienced before. thankfully my college had a back specialist who told me what was wrong, why it would not have shown up on all those x-rays, and then gave me drugs and sent me to physical therapy.

I spent a lot of time for pretty much the entirety of my BFA year ( so I was still expected to be producing professional quality artworks for display at the end of the year) just absolutely crippled by pain and inconveniencing everyone around me through how helpless and unhappy I was. nowadays I live in fear of re-injuring myself and although I've got a lot more spoons than I used to, the spoon drawer ain't infinite and it never will be.

anyways, all I really want to say is SING IT SISTER!

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