(Note: soon after I started writing this this morning, I realized that it’s heavily influenced by BFP and Jess’s (Re)Thinking Walking series at Flip Flopping Joy. I’ve had a troubled relationship with walking for a few years, but their essays helped me crystallize a lot of thoughts that were amorphous, and I doubt I would have come to this essay without them.)
About five years ago, I worked as a computer services aide at a public library. Most of my job consisted of running around the main branch fixing problems and installing software. Sometimes the running around was virtual – we had a program called VNC, which allowed us to freak out librarians by manipulating their computers remotely – but more often than not, it was physical. I’d run around. Well, walk. I loved this job because it allowed me to move, exercise, be active, interact with people, hide out occasionally in the stacks with a book as software installed or there was a lull in demand. So one day I was walking around, carrying a box of floppy disks from one project to another, when on the mezzanine between two floors, I felt a sudden stabbing pain in my hip.
I stopped, stunned. I’d never felt pain like that in my life. Holy shit, was it strong! What the fuck!?
But by the time I’d even registered it, it was gone, so I kept walking. About ten minutes later, I felt it again. It was so absurd that I actually laughed out loud. It was perversely fascinating.
That day, my hip felt tender for awhile but it went away by nightfall. I didn’t even think to mention it to my boyfriend. Over the next few days, though, it started to come back gradually – not a sudden, stabbing pain anymore, but rather a sharp ache, like a cramped muscle or a joint that needed popping. It would almost reach a crisis point and then fade. I’d always had back problems, so I assumed it’d go away on its own, but it didn’t – instead, over the next few weeks, it got so bad that I began to have trouble walking. Not that I stopped walking; after all, I didn’t think anything was actually wrong. I considered myself kind of a sissy about pain. The limping? Oh, whatever, I figured everyone got that sometimes. Every day I’d walk downtown to meet my boyfriend for lunch and ignore the stabbing, aching, and squeezing that was going on around my tailbone. I’d have to stop several times to rest it and rub it (not that either had any effect). I still rode my bike. I refused to take pity on my pelvis. I kept pushing it to do whatever I felt like doing – except, as the pain got worse and worse, I began pushing it just to behave normally.
When my boyfriend finally suggested that we go to the emergency room, we went to a hospital with a confusing parking situation and ended up parking on the street a good quarter mile away. By then, I could barely walk at all. Every step killed me and I had to lean on him for support. But what’s wild is that it didn’t occur to me for a second to just ask him to drop me off in front of the lobby. Why, when I could just walk? (Except the whole point of going to the ER was that I couldn’t walk!) So we parked and it took us about half an hour to get to the lobby. I held onto his arm and panted as I shuffled and hopped, trying to get there without putting any weight on the bad spots, which had a habit of jumping up and down, from the front to the back, and from leg to leg.
I didn’t mention that this was in a city with a high working class and impoverished population, so when we got there, there were easily fifty people waiting. I went to triage and, when they showed me the smiley-face scale and asked me to rate my pain, I told them it was a 6 usually, but a 9 at the worst moments (I thought that if I said 10 they’d assume I was exaggerating). Then a man fell out of his wheelchair and had a seizure on the floor. “It’s going to be a few hours,” the nurse said.
So I went home and tried again the next morning. Three hours. I felt bad for calling in sick. I limped through three waiting rooms, and when I finally saw a doctor, he told me that the problem wasn’t my hip, but my back, which I’d apparently sprained. He gave me a prescription for Ibuprofen, told me to ice it, and sent me home. (Later I’d receive a bill for $157, which my dad offered to pay. But there was a mix-up, and he never got the first bill or the second or the third or the notice from the collection agency, and three years later I had to find a cosigner for my apartment in grad school.)
The Ibuprofen worked… for a little while. But for the next several months, the pain was always in the background. It didn’t reach a crisis point again – I never had trouble walking – but I was always aware of my movement. There was always a tightness, a discomfort. I was bothered by it, but I didn’t bother to see a doctor. I’d sprained it. This was probably normal after a sprain.
But about a year later, I had my next major flare-up. This time, though, I was angry about it, and I started taking that anger out on the pain itself by rubbing my back too hard, or trying to pop the joint, or doing stretches that felt good for a few moments but definitely were not therapeutic. Because, hey, being gentle sure as crap didn’t work, so why not be rough? Well, you can imagine how that went. It started hurting more intensely and more often: sitting the wrong way, then lying the wrong way, then moving the wrong muscle, then moving any muscle too hard aggravated it. The more constrictive it got, the angrier I became. After a couple of weeks everything I did seemed to be wrong. “There’s this secret thing I want you to be doing,” my back seemed to cackle, “and I only want you to do that one specific thing, and everything else is off limits!” It finally culminated in a huge catastrophe – the pain flared one night into something uniformly unbearable, a 10 that didn’t let up. I lay on my boyfriend’s bed crying and gasping, but breathing made it worse and breathing abnormally made it extra worse, so I could feel myself injuring it more and more by venting the frustration that my brain needed to vent. I was literally paralyzed. My nose was stuffed but I couldn’t blow it. I coughed and it felt like I’d blown my fucking legs off. The worst was when I had to pee. I’ll spare you the details, but suffice it to say that it took about fifteen minutes. (My boyfriend offered to carry me, but that hurt, too.) When I lay back down, I felt the bizarre urge to laugh, just like I had that first time. It was just absurd. It was just unbelievable. And it would take me years to realize how unfathomable it was that throughout the several hours I spent crying and hurting on that bed, it didn’t occur to either of us to take me to a damn hospital.
I had lunch with my mom a couple of days later and broke down when she asked me how I was. She gave me the name of her GP, who told me that it was a strain. I’d strained my back. To this day, I’m not even sure she heard me correctly when I told her the first guy said it was a sprain, and it still bothers me to think that maybe she made the wrong diagnosis because she was careless and just went off of what she thought this other doctor said. But she seemed to know what she was doing. She gave me anti-inflammatories and muscle relaxers and a referral to a physical therapist.
And the medication and physical therapy worked… for awhile. When the physical therapist first showed me some stretches, they worked like magic. Like magic! I’d lie down, unable to walk, and when I got up after the stretch, I could walk with no pain at all! Hallelujah! Let’s hear it for a quick fix!
But the more I did them, the less potent they got, until by the time I had my next major flare-up a few months later, they did nothing at all. I was in grad school now, and I’d walked to the university library one day to discover that I couldn’t walk back. So I lay down on the lawn and, intensely self-conscious, did the stretches with 30,000 undergrads going about their business around me. And when I got up, it still hurt, and I still couldn’t walk, so I limped and shuffled home. I didn’t call anyone to help me out or give me a ride. This was my first semester, see, and I didn’t have any close friends. Besides, they’d think I was a drama queen.
The exercises the physical therapist had shown me were meant to strengthen my abdominal muscles. Apparently this kept happening to me because they were too weak, or maybe I needed to make them stronger than average to keep it from happening again – I was never really clear. But there were so many of them, and I was supposed to do so many sets of each so many times a day, that I quickly gave up. “Let me show you another one,” he kept saying. “Oh, and here’s another.” Was I really supposed to do all of these? Were some better than others? Was I supposed to pick the ones I liked? I never had the courage to ask. And besides, when I tried to do them while I was still injured, they just made it worse. The trick, it seemed, was to wait until I was healed and then do them as a preventative measure. But how could I ever heal when my abs were too weak? It seemed like a catch-22.
Then it went away for a couple of years. Maybe it was the pilates and yoga; maybe it was just a good spell. I’d get twinges fairly often – again, that tightness – but there were months-long stretches when I felt no pain at all. I thought I had it figured out: whenever it seemed to be approaching a flare-up, I’d take a day and lie down from sunup to sundown, and that usually fixed it.
Except here I am, again in pain, again unable to walk or move, again feeling like I’m punished no matter what I do. It’s been weeks now since I had the audacity, the gall, to stand on one foot in the shower while I was soaping myself, and was slammed with the now-familiar stabbing pain at the top of my femur. (Was it a nerve being squeezed? A ligament tearing? A muscle spasming? I don’t know. None of the doctors really explained what goes on in a “strain.”) I’ve been limping and shuffling and crying and gulping Advil and living on ice packs. It’s been weeks and it hasn’t even come close to subsiding. Distances seem to stretch like event horizons – something ten feet away becomes twenty feet, then thirty feet, then forty, as I try to get myself there. The slightest movement takes meticulous planning. And I’m so exhausted. I spend so much time thinking about my hips and so much energy protecting my hips that I can’t do anything else.
I want to go jogging so bad. I’ve been craving it.
Everyone’s telling me to go to another doctor. I will, I will – my husband and I are going to sit down and find one tonight. The most basic reason I haven’t yet is because I already have. I’ve been to three. They’ve already given me the stretches and the exercises. I could at least get a refill on the medication, and I’d sure like to, but I’m afraid of how much it’ll cost – last time, the muscle relaxers were a hundred and the office visit a hundred more. Besides, how long do I keep taking medication? When do I get to just fix this?
Plus, the sheer task of choosing a doctor is enough to send me into a panic. When I do a search on the Blue Shield website, I come up with dozens of names with no rankings or descriptions. I’ve chosen some pretty bad doctors this way in the past. I steel myself up to do it and then i can’t bring myself to do it. I just have this overwhelming certainty that whichever doctor I see is going to take my money and brush me off. And my back will continue to hurt and hurt and hurt.
And I keep wondering if the whole sprain/strain thing is just a smokescreen anyway – if the problem is something completely different and has gone untreated. What if the doctors aren’t taking me seriously because I’m a woman? What if they think I’m lying? (Why can’t I get away from the idea that doctors are automatically suspicious of me?) When I went to the ER for the first time, I wanted so badly to ask him if I could get a temporary parking placard so that I wouldn’t have to limp, in incredible pain, across vast parking lots. But I didn’t because I was afraid he’d assume I was faking the pain to get better parking. I find that I want some object – a placard, crutches, a brace, I don’t know – as much for validation as for pain relief and assistance. I want what I have to have a name. Sprain/strain is vague. It sounds minor. “Oh, you strained it, just take a load off.” I’d feel better if this looked and sounded as serious as it feels. (But maybe the term “strain” is completely accurate. Maybe the doctor just didn’t explain it very well.)
I’m reminded, here, of why I stopped getting my curly/frizzy/Jewish hair cut professionally. Stylists were putting huge knots into it, or straightening and layering it without my permission. Every time I went it turned into two people fighting my body – one of us hating it and wanting another, and the other dismissing its needs to get their job done faster. I’d love a good haircut; nowadays it always just looks blah. But I’ve never gotten a good haircut in my curly-haired life.
I’m reminded of all the people I’ve let take advantage of me. All the times I’ve shut up and let it happen.
But the core of the issue is that I’m afraid I’m making this up. I’m afraid it’s all in my head. Why didn’t I think to go to the ER that night in my boyfriend’s apartment? I’d known other people who’d gotten quick injections for back spasms; in fact, one of them was standing over me, offering to carry me to the bathroom. Obviously it was because deep down, I was just pretending. Why can I still not wrap my head around the idea that this pain is real? Why can’t I stop thinking that I could walk just fine if I really felt like it? Because the doctors sent me home without a placard? Because it doesn’t have a name? Because I’m just a hysterical sissy woman who wants attention? Because I’ve internalized the trope of the hysterical sissy woman so much that in the examining room, I downplay the symptoms that could lead to proper treatment? So much that I don’t even think to tell the doctor that the treatment’s not working, or even make sure she heard me correctly?
I wanted to bake bread today, but standing up and kneading dough is out of the question. I wanted to work on my novel but couldn’t concentrate.
I’ll confess, there’s no real point to this essay. Connect it to feminism, connect it to health care, connect it to disability – I just wanted to get it out before I grit my teeth and go to the Blue Shield website and start the whole circus over again.
I just want to know why I lack the courage to admit that it hurts, to ask someone to listen and help.
(Cross-posted at Modern Mitzvot.)
You need to learn to be a Bad Patient – a stroppy, well-researched bitch who won’t take no for an answer, who wants everything explained *in detail* *right now*. I have become that Bad Patient – I had thyroid cancer go undiagnosed for 18 months because doctors kept telling me I was just fat and lazy and needed exercise and a diet. I underplayed my fatigue, thinking they wouldn’t believe me. I went to appointment after appointment, only to come away humiliated and confused, and angry at myself for not being able to lose weight. An audiologist – treating me for something non-weight-related – discovered a nice big tumour on my thyroid, which causes…weight gain and fatigue.
I have never been a Good, Submissive Patient again. Yes, medical staff will dismiss you because you are female and you can’t instantly pinpoint the source of the problem. Female medical staff are as dismissive as male staff. Draw on your inner bitch. Get some answers. Get your life back.
i’m not sure what i expected when i started reading this. i want to compliment it, but am afraid of being patronizing, so i’ll just give you a quick anecdote: two years ago i got a serious sinus infection, and didn’t get treatment for two months despite there being a clinic on campus. even though my whole head hurt immensely and i was exhausted from not sleeping (having your nasal passages completely swollen shut means all breathing is done through the mouth, which likes to close sometimes, so i would wake up quite often, plus the dry mouth was highly unpleasant). my professors even urged me to go to a doctor, but my doctor was forty minutes away, my car almost out of gas, and i worked 10 hours a week at a measly minimum wage campus job.
eventually i did go to the clinic hoping they could just hand me antibiotics, but it turned out that i also had pleurisy and oral thrush (the pain in my head was so great i hadn’t really paid much attention to the pain spreading to my throat and lungs–which already suffered from my asthma, which is a continuing problem) and i then was forced to go to the doctors. i know what it’s like to cry at night because the pain is so bad, but unlike your predicament i had specific infections. you’re right; strain/sprain is vague and does nothing to ease the pain or cure it. sometimes doctors see so many patients in one day–i was in a busy clinic once and the doctor made me feel like some car on a line, asking short clipped questions without waiting for a full response, not making eye contact as she scribbled on her clipboard, tossed some prescriptions at me and left the room. it’s very frustrating when all you want to do is be able to function. you’re also right about how we now have to search for doctors: it’s almost like trying to win the lottery.
i hope you feel better soon.
I’ve spent many years advocating for others in medical settings, but no so much for myself. I do understand every insecurity and fear you have about going to the doctor when something is WRONG, but vague wrong.
Let me advocate for you a bit. Take it FWIW. If your medical plan allows you to go straight to a specialist, do that. Go to an orthopedic doctor or a physiatrist. (No, not a psychiatrist! A physiatrist who specializes in mobility impairments and rehabilitation.) If you have to go to a GP first to get a referral, go in and ask for a referral. Don’t leave until you get one. Before you go, write down a little timeline of your whole medical history regarding this. Show it to them so they know that you are not starting from scratch. Ice, ibuprofin, PT has been tried and has not done enough to fix the problem. At this point, you should be getting an MRI on your pelvis and spine. Push for that.
Also, doctors hate this, but Dr. Google is your friend. Research your symptoms and see if you can diagnose yourself. Even narrow it down to a few ideas and suggest these to your doctor. Don’t bother to tell them you got the idea off of the internet, just say how your symptoms make you suspect that you have X. (Just off the top of my head, have you thought ever that you might have rheumatoid arthritis? It can strike locally and when you are young sometimes. Just a thought.) Then that might get their juices flowing and give them a clearer picture of what you are talking about. And as was said above, be a bitch. Be assertive. Be goal oriented. Don’t leave without getting to a next step that makes sense to you. They may hate you, but who gives a crap? It is your body and your life and you need to do what you need to do.
And good luck! Look at it as a project that you will have to invest time and effort in. It might take a while to sort it all out. Don’t quit.
Thanks, all – I’m so glad I’m not alone here.
MRI… oogh, money money money… but I do want to fix this damn thing. Thank you for the advice.
Seconding what everyone else has said, advocating for yourself and sometimes being a Bad Patient is essential. “How come?” and “What does that mean?” are essential questions — don’t leave the office until you’re sure you understand everything the doctor has said, and why he or she has picked a particular treatment.
(And, as someone with Ehlers Danlos Syndrome who is currently awake because she made a really dumb choice of shoes this morning and now her hip is aching, just letting you know that you’re not alone.)
I hate that stupid pain scale. It’s like a miniature existential crisis when I have to cough up that number. I don’t want to minimize, but I don’t want to exaggerate, and compared to what, anyway?
Pain is taken less seriously in women, and I also have found that many doctors start to resent the patient who isn’t easy to cure. Everyone has given very good advise, so I will wish you resolve. Every time I prepare to go in as the informed patient who won’t leave until I get answers, I end up floundering again in the face of the real, live, exasperated, sighing doctor. Draw on your inner bitch, indeed.
I have had such similar experiences in my life, from the pattern of pain to the accusation of “weak core muscles” as the explanation of everything, that I was waiting for you to end with “I finally got a referral to a rheumatologist and I have this weird kind of arthritis….” Go to the Spondylitis Association of America website and read some of the disease descriptions. Does this sound like you?
It takes years for most chronic diseases to be diagnosed. We “don’t look sick” so nobody takes us seriously. It’s frequently worse for women to get their pain taken seriously. You are not alone.
I posted a much longer comment that appears to have been spam-blocked. Hopefully it will be resurrected, but in the meantime, I just wanted to say your description of your pain is very familiar to me. Pain and tightness around the tailbone is frequently a symptom of inflammation of the sacroiliac joints which is the classic early symptom of Ankylosing Spondylitis. Since my links appear to have caused a problem, that should be enough for googling to help.
I’m male and I’ve been through that, on a smaller, single-event scale. Was doing some construction work around the house and inhaled something I shouldn’t have. Spent a few days in the hospital. While taking care of my lungs, somebody said they “thought they saw something” on a CT scan.
Nobody would tell me what was going on. Nobody would tell me how long I was going to be there. Nobody would tell me what exactly they were worried about – they’d talk about abscesses and possible sources, but I never got to see the same person twice so nobody seemed to be able to tell me what it was they were worried about – not even vaguely. I kept thinking there was some shadowy figure who was “my doctor” who was one of the million faces swarming past my bed who knew what the hell was going on, but I had completely lost track of who was what.
They sent me home afterwards, with no explanation. I didn’t get a clearer idea of what the hell happened until I got to see my GP a couple of weeks later, and even then it was still a blur.
Ok, here are my suggestions to add to your pile: Forget the GPs. Forget the ERs: ERs are designed to deal with the crisis, not the underlying problem. Go straight to a neurosurgeon. He or she will be an obnoxious jerk* but will order an MRI and find out if you’ve got a disk somewhere that it shouldn’t be or other clear structural pathology in your back. And if he/she advises surgery and you don’t want to go that route immediately, get a second opinion. (Contrary to what you might think, neurosurgeons don’t, in fact, always advise immediate surgery. They handle lower back pain routinely and any who don’t know when to back off and let the PTs handle it don’t stay in business for long.)
I second (or whatever #) the “be a ‘bad patient'” advice. It’s not being a bad patient, it’s being informed. Caveat: do remember that a Google U degree is incomplete and don’t come in assuming that you’ll have the right answer. That becomes counterproductive. But do be assertive and, particularly, if you don’t get satisfactory relief after a given treatment tell the doctor about it: if you don’t he/she will assume you’re doing well and not go any further with things.
Finally, bills. Hospitals are lazy. They’ll send you bills rather than your insurance company because if you pay then they have the cash on hand rather than having to wait until the insurance sorts it out and decides to pay 41%. If you get a bill, don’t try to pay it immediately. Call your insurance. Call the hospital and tell them they sent the bill to the wrong place. Call a patient advocate or a lawyer if you need to. You may owe some money, but it almost certainly won’t be everything that they initially bill you for.
*99% of neurosurgeons are. I think that the residency induces PTSD. But they come out knowing what to do with painful backs.
Because it takes tremendous amounts of your time and energy and pain just to get to the point of seeing medical personnel (which it shouldn’t take, in a humane world, but it does), and then the medical personnel don’t do anything that helps very much in solving the problem.
Yes, medical staff will dismiss you because you are female and you can’t instantly pinpoint the source of the problem.
I’ve seen this more than once. A friend of mine had back pain and had two doctors tell her she needed a hysterectomy. The third one finally took her seriously and ended up removing her gall bladder and her pain. So don’t let this kind of attitude surprise or depress or deflect you.
You need to learn to be a Bad Patient – a stroppy, well-researched bitch who won’t take no for an answer, who wants everything explained *in detail* *right now*.
The days of “Yes, doctor” are over. You need to be as well informed consumer of healthcare as you are a consumer of cars or food or clothing or electronics.
It’s not called being a bad patient, it’s called aggressively managing your care. (OK, if you’re a woman, those are the same thing, and you probably already have a good understanding of the social conditioning that says you don’t really deserve to be out of pain.) You may not like it, but if the pain is eating this much of your life, then making a serious part-time job of fixing things is a good investment.
What the rest of them said. Also: keep a file; get your previous files where you can. If you can document “been there, done that” it will save time for good doctors and shut up lousy ones.
I feel for you. Several times now, my “back’s gone out,” which is a euphemism for “dear god it is 2001/2003/2005/2006 WHY CAN’T THEY INVENT ANTIGRAVITY SO THIS RED-HOT -FUCKING- PAIN WILL -FUCKING- GO -THE FUCK- AWAY ARRRGGGH”
I never did learn for sure what the problem is, but from what I gathered, plus google-diagnosis, put the problem at: my spinal bones were pinching a major nerve in my lower back, at my tailbone. Strong painkillers let me get get on with my life, but three things:
1. rest (sleeping with my back on the floor with no pillow – every morning my shoulders and neck ached like hell but it took the pressure off my lower back),
2. muscle relaxing pills, and
3. time spent in the swimming pool/hot tub at the gym (shooting for zero-G, no pressure, also the heat was a good relaxant)
eventually fixed me up. Sometimes it took a day or two, once two weeks. Highly variable. The medical profession was not particularly helpful, but holy mother of god was the insurance profession completely useless.
*hugs* I hope things get sorted out. FWIW, I’ll pray for you.
If walking is painful, maybe it’s time to stop walking. That may sound obvious and/or patronising and/or unfeasible, but I think you should take a look at this.
Take care.
Dealing with the medical industry when you have pain that isn’t easily diagnosed sucks. I feel for you.
In addition to being assertive with medical personnel, you want to let them know that you want to work together with them to solve the problem. Those words are very powerful and effective when dealing with doctors. I would also suggest that your husband go to your appointments with you. Doctors are much less likely to dismiss you out of hand and/or be dismissive or nasty to you if you have someone (preferably male) there with you.
Don’t be afraid to get 2nd, 3rd and 4th opinions. Don’t be afraid to “doctor shop” (although you don’t want to let the doctors know – the fewer previous doctors they think you’ve seen, the better off you’ll be). Don’t be afraid to ask questions or to go to your appointment with a written list of your symptoms and a list of questions.
It’s going to be tough as hell, since you’re already ground down by the pain and the ordeal. That’s where your partner can really lend a hand. He can make sure that everything you’ve wanted to ask or say gets asked or said.
Also, it gets a little easier as you get to be the same age as the doctors that your seeing. The level of respect that you receive starts to rise.
I’ve watched my wife go through dealing with chronic pain & the abysmal treatment from doctors for years and the above has been very, very effective. She now has a decent pain management doctor who doesn’t think that she’s just a drug seeker.
I wish you the best in synthesizing your strategy from all the advice that you’re getting and in getting a doctor who takes you seriously, cares, and works toward a solution for you.
Agreed with Dianne re: billing; if you can’t afford a lawyer but live in a town with a Legal Aid, there should be someone there who can help. I interned in the Health Law unit for a semester and spent the bulk of my time negotiating reductions or eliminations of bills. Nearly all hospitals are required to do a certain amount of free care, and doctors expect that some patients won’t be able to pay in full; this can become a charitable tax deduction for the physician’s practice.
I’m reminded, here, of why I stopped getting my curly/frizzy/Jewish hair cut professionally. Stylists were putting huge knots into it, or straightening and layering it without my permission. Every time I went it turned into two people fighting my body – one of us hating it and wanting another, and the other dismissing its needs to get their job done faster. I’d love a good haircut; nowadays it always just looks blah. But I’ve never gotten a good haircut in my curly-haired life.
Look for someone who specializes in curly hair. This might be difficult if you’re living somewhere rural or small town (when I lived in Texas, I refused to get my hair cut by more than necessary to trim split ends because every salon in town wanted to give me the patented Big Hair), but if you live somewhere with at least half a dozen salons, you should be able to find one with a hairstylist who appreciates curly hair and can work with it. I have such a person now and I can trust her to do new things with my hair, things that I would have thought would look ugly or weird on me, because she gets it.
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I’m sorry you’re in so much pain. It’s really horrible. You’ve gotten some great advice in previous comments, but I know it’s still a hard situation. One thing that’s helped me a lot in dealing with my own chronic pain problems (and medical care in general), is bringing an advocate to doctors’ appointments. It’s really HARD for anybody to be an effective advocate for themselves. You go to the doctor when your pain is getting worse, which would make anybody frightened and confused…but that puts you in a place where it’s even harder than usual to be an effective advocate. You don’t need to find somebody with particular experience in medical advocacy, or a lawyer, or anything like that. Just bring a trusted friend or relative, and have the person come in with you to talk with the doctor instead of staying in the waiting room. It also helps to write down a list of questions you want to ask the doctor, and what you’re looking to get from the appointment–diagnosis? prescription? referral?
I suggest being cautious about going directly to a specialist, when you don’t have a clear and complete understanding of what is causing your pain. Orthopedic surgeons are really good with problems that can be fixed surgically, but if your problem isn’t surgical, they can’t help you, and might not care much about trying. Physical therapists are really good with problems related to some kinds of muscle weakness and tension, but they can’t help other kinds of problem (and might not even notice them, especially if there is also muscle weakness.) The doctors in an ER might not seem like specialists, because they deal with so many parts of the body, but most of them specialize in emergency medicine. Their main concern is diagnosing and treating life-threatening emergencies. They’re not very good with chronic conditions, other than stuff like asthma which flares up as life-threatening emergencies.
I’d suggest asking around your local community to find a GP who has a good reputation for listening to patients and taking their concerns seriously, and also a good reputation for dealing with ongoing musculoskeletal problems. You don’t need to talk to people who have problems exactly like yours, but local people who have arthritis or frequent sports injuries and like their doctor would be good to talk to. I’ve been fortunate in finding a good GP who works with me, but some people do better with a sports medicine specialist or physiatrist. I’ve found it valuable to start with recommendations from my community, and then cross-reference with my health insurance; it’s easier than starting with the huge list the insurance company provides.
Julie, back pain is one of the worst and hardest problems to get a good diagnosis for, and you have my total sympathy and best wishes. Many of the posts have good advice, and I especially second having the advocate with you, writing out the questions ahead of time, and doctor-shopping. Also, have your husband ask around casually at work (you can do this too, if you want) about who a good doctor is for back pain. A fair number of men in their forties start having back problems, so you may get some good referrals for acupuncture, orthopedists, and so on.
My husband was in his early twenties when he started having major episodes of lower back pain (as in, prescription pain meds and still having to crawl to the bathroom). Sometimes he would be flat on his back in bed, unable to walk and in pain, for a week. We tried orthopedists, chiropractors, neurosurgeons. He had X-rays, CT scans, MRIs, some funky test where they stuck needles in different nerves and measured how fast an electric charge traveled along the nerve, and so on. He had special exercises, Epsom salt baths, special heating pads, special lifts in his shoes, and so on. Finally, we found a GP who started at the beginning and looked at every single piece of paper in his file, and the GP referred us to an osteopath who specialized in back pain. The osteopath looked at all of the test results, talked to my husband, watched him walk, had him come in when the pain was at different levels, and voila, 18 months later, we finally had a diagnosis that made sense.
My husband had ruptured a lumbar spinal disc, but he also had an extra prong on one of the lumbar vertebrae, so that a major nerve was pinched every time he stood still or sat still too long. Essentially, not moving when in an upright position squished the fluid out of the spinal disc through the rupture and allowed the extra prong to squish the nerve. So in order for him to heal the rupture, he had to be in bed without getting vertical for about a month. If he still had pain after that, they were planning to inject some artificial fluid into the disc, but that turned out to be unnecessary. He’s fine now.
Incidentally, if you watch video of JFK now that you’ve been having back problems, you can probably tell when he was having problems, too. I’ve startled any number of co-workers who thought they were dealing with their pain unobtrusively by asking if their back was bothering them.
Get copies of every piece of paper you can and keep them where you can find them. Take a small notebook with you and write down the names of the people you’ve talked to.
And if they call you by your first name, call them by their first name. If Dr. Whosit calls you “Julie”, say “Doctor, I don’t believe we’ve been introduced. What’s your name?” and then use it and not “Dr. Whosit”.
Julie–I want to thank you for writing this. As somebody who also deals with that regular stabbing pain (if I get up too fast or twist over in bed in the wrong way, I can literally be laid up for three-five days unable to move, unable to do anything but…oh..nothing. I know that helpless feeling, I know the desperate feeling of facing down huge bills just so you can do something “simple” like walking…just give me a few days and I’ll be ok, I swear! (as you huff and puff to keep yourself from screaming in pain)…
I’m aching with you–and sending you good thoughts and hope that you will find relief soon.
Are you by ANY tiny chance near the Twin Cities?
I’ve worked with a pelvic-specializing physical therapist who explains all those things you had questions about. (For example, from what she told me–my guess is that yes, the goal is to get your abdominal muscles stronger than the average person keeps theirs, and yes, some exercises are “better” for serious pelvic difficulties than others, but they only strain you, rather than help you, if you haven’t done the first exercises thoroughly, and based on that, I do wonder if you should have been led (with decent explanation–geez louise) on to exercises more suited to keeping you in good shape for life before you were turned loose! Oh yeah, I just remembered one other thing–some exercises are meant to relieve pain ASAP in people who haven’t already been doing abdominal exercises. I remember my therapist telling me that they weren’t going to be miraculous forever, even if I did do them as regularly as she was telling me to…though again, that she couldn’t move me on into anything else I might need unless I at least did them to getting strong at them. (She said she couldn’t predict until I got there, though, what path that might take exactly–especially since the pelvic-specialist orthopedic surgeon had said, “Yup, your x-ray looks fine upon preliminary inspection–I’d say you’re good w/ assuming it’s muscular and letting your physical therapist take care of you, unless you’re still in pain once she thinks you seem strong enough to be out of pain. Then come on back.) Good instructions from both docs…anyway, if you’re near the Twin Cities…let me know!
There’s been lots of good advice here, so I’ll just say this: you aren’t making it up. You aren’t hysterical. The medical system is difficult to negotiate. Don’t give up on yourself because of it.
Katie – nope, Southern California. Thanks for the info, though – that’s really helpful.
And again, thank you to everyone for all the advice. (Including the curly hair advice! I love naturallycurly.com’s salon database, even though I’m still working up the courage to try one.)
bfp – yes, that! What in the world are we damaging when we turn over in bed!? I hate lying on one side thinking, “I believe I would like to spoon my husband at this point,” and being afraid to do it lest I end up hobbling around in my pajamas for a week.
I’ve never read this blog before, but I saw it over at flip flopping joy and felt I had to comment. I have had several friends and relatives with arthritic autoimmune disease and this sounds just like their struggles. Several people have already brought this up, but I’ll add my voice to the choir in the hopes that it will inspire you to continue to pursue your health.
I worked for a number of years at a company that makes the tests doctors use to help diagnose RA and several other diseases. While I was there I learned that women are far more likely than men to suffer from these. AND it takes the average patient with an autoimmune disease 10 years to get a diagnosis for exactly the reasons you’ve outlined here.
Take your body seriously. Don’t let the doctors put you off. Find the best rheumatologist in your area and insist on getting an ANA (anti-nuclear antibody) screening and a test for HLA-B47 (the marker for Ankylosing Spondylitis). These will help rule in/out autoimmune arthritis. These diseases are often degenerative, but if you can get on a treatment regimen NOW, you can get back to the physical activities you love.
My step-mother (a life long athlete and cross-country runner) began experiencing the kind of pain you described about ten years ago. She went through the same process of ignoring her body, of being pushed off as a whining/hysterical woman, and of being referred to psychiatrists for her “phantom” pain. It eventually split her and my father up. But she finally got the right diagnosis and with medication and regular exercise, she’s almost as active as she used to be. And, she’s a much happier, centered person.
Take care of yourself!
Just a minor sidenote correction: HLA-B27 is a genetic marker correlated with Ankylosing Spondylitis. Not everyone with AS has the gene, and many, many more people have the gene than will ever have AS. The genetic test is no longer considered diagnostic for AS. Which is one of the many things that makes it so hard to diagnose.
Also here via flip flopping joy…. whoa, I identify very hard with this post. Thank you for writing it.
I also have had chronic, ill-understood, ill-treated pain, since adolescence (getting worse + weirder by the year), and messed-up socialization from internalized abilism (“everyone on the street thinks I’m faking it!”) to my deep inability to ask even beloved friends to accommodate me.
the only thing I can add to this discussion is http://www.workingclassacupuncture.org/… there’s a sliding-scale acupuncture clinic in my neighborhood that’s made it affordable for me to have acupuncture twice a week, even with my poverty-level income. i grew up with a strong western-medicine bias but at this point i expect no help– if not outright cruelty– from western doctors, and i am philosophically open to any medical treatment as long as it’s inexpensive.
*hugs* I have very little to say, except I hope things go ok for you. I also think that maybe you would benefit from looking at this.
http://wwcoco.com/cfids/jessestop.html
FWIW, I’ll say some prayers to you.
Oh, and curls for the win! Never give in to the straighteners*love*
As others have said, you aren’t crazy. Your pain is real. Take it seriously, find a doctor who will listen, and get some answers.
If muscle weakness and exercise is the ultimate answer, take that seriously. Find someone you can work with, whether it’s a PT, physiatrist, yoga teacher, or anyone else who can help. I’ve had great experiences with PTs – they’ve been attentive, take the time to watch how I move and find out what’s going on, and helped me set up a program I can do. They gave me drawings and lists of exactly what I should be doing, and what to do after that routine got easy. My exercises are just part of my life now. If I don’t do them, the pain comes back.
trackback-
The place where nobody can follow
I followed a link here and I am disappointed, not in you but in your doctors. You do need to learn self advocacy. It is the hardest part of being in pain, and as a woman you will hear often it is all in your head. There is no such thing as Hypochondria. I grew up being over medicated and wound up in a wheelchair with more than one very real and “rare” condition tearing my body apart.
I have a broken back that went untreated for two years before I learned to self advocate. In your honor I am about to write a post about Firing Doctors on my blog. Textual Fury. You can fire your doctor, you can demand, the day you go in to even a specialist’s office to see someone else.
If you do not feel they have found a solution, you have to push. I know it is hard, but there are thousands of people who have managed it.
Yours,
Kateryna Fury
P.S. if you need more ideas, email me.
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I was just blown away by this Julie thanks so much for writing it. For me, the overwhelming reaction was one of gratitude that I live somewhere that still has a semblence of a public health system, and also admiration and respect for anyone who has to negotiate pains that doctors can’t negotiate, and a private health system.
My best friend had a hip pains over the course of a year, getting worse and worse. She was told that it would go away, she was told to exercise, she was told to medicate up to her pain level, she was told by some incompetent osteopath not to take any pain killers just to see if what the osteopath was doign was working. In fact her hip replacement (she has psoriatic arthritis and had double hip replacements 7 years ago) was working its way out, something no one noticed until it came right out from the hip socket. It sucked beyond the telling of it, and it didn’t even happen to me.
I hope you can get some answers, and in your quest to do so, don’t beat yourself up about the fact that it’s hard. That’s structural not you.
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Julie, I hope you know what you insurance says it will and will not cover before you jump the gun and go see a specialist. Since most insurance expects you to see your primary care physician and get a referral before you see a specialist, I’d suggest you find a gp/fp, take your written notes of your history and show them all you have been through. Hell, print out this post and take that with you too. I’d hate for you to make an appointment to see a neurosurgeon, or phsyiatrist, only to have BC/BS say you are now responsible for paying the entire bill since you didn’t get a referral.
But do see a gp/fp and advocate like hell on your own behalf, don’t take ice and ibuprofen as the answer anymore. Tell your doctor that you need diagnostic tests to find out what is really going on and won’t be brushed off anymore.
I am extremely privileged to have excellent insurance, and yet, awhile back I didn’t know I had a 500 dollar deductible for medical equipment. I had gotten a traction unit. I told my readers on my little blog that I’d probably have to send it back even though it was helping me because I didn’t have 500 dollars. I was so humbled to know how many people care about me, and how it spread that I needed help, and everyone came through, I got over 420 dollars to cover it and came up with the rest myself. I’m telling you this because I have a little blog and yet was able to get that kind of help. If the one thing that is holding you back is the price of an MRI, then run a fundraiser on your blog and ask if Amp would let you run one here. You need to get medical attention for this, you’ve been suffering for far too long already.
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as someone with similar back problems (mine is caused by a herniated disc, but nerve pain can be caused by tight muscles the back/butt too), i feel you on the trouble you’ve had with doctors. fortunately, they gave me the correct diagnosis the first time i went to the ER, although it wasn’t confirmed with an MRI until years later. unfortunately, having a diagnosis hasn’t helped–i’ve been through years of physical therapy, pain medication, and epidural injections, but apparently i’m not an easy case.
i would urge you not to follow the advice above to stop walking because it hurts, though. for most back problems, walking (to the extent you can tolerate it, of course) is one of the best things you can do to help your back work more normally. it’s often too excruciating for me to walk, but as soon as i can tolerate even 5 steps, i take them–and try to work up to more. but obviously if a doctor can diagnose you adequately, she can probably give you better advice than us randoms on the internet… if.
Here via bfp’s blog.
Two things that have helped me with a possibly-similar back problem (not as bad, but then again that could be because I’ve had better treatment):
1) seeing a chiropractor (this is in the UK – not sure if it would be called the same thing in the states) – they specialise in spinal problems and treat them by non-surgical manipulation. You lie down and they do things to your spine.
Some people find it a bit unsettling to have their bones “clicked” into place, and sometimes it’s a bit “ouch!” in the moment (other times not), but I’ve never found it badly painful – and to me it feels sort of right, unlike the “what am I doing to myself” pain that warns of an injury.
Chiropractic has had a fair bit of “proper research” and been shown significantly more effective than “usual western medicine” for back problems. (The nearest thing within the “usual western medicine” system would be osteopathy, or at least that’s what it would be called in the UK.) The great thing about it is it does actually fix the problem, rather than just giving a little relief or even covering up the symptoms.
2) gentle swimming – I find this helps me to not get too stiff.
h.t.h.
Anyway I wish you all the best with the negotiations of getting what you need.
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