Well, this kind of took me by surprise.

It seems that while I was watching Grey’s Anatomy and Lost finales, and before that getting laid off and starting a new business, the American College of Rheumatology came up with alternate diagnostic criteria for fibromyalgia diagnosis.

Tender Points Versus the New Criteria

Up until now, the main criteria was the direct “tender point” palpation test, where if you experienced pain in 11 or more out of 18 specific tender points, plus widespread pain for at least three months, then you won the fluffy pink stuffed rabbit.

Now, it seems, the ACR has proposed an alternative diagnostic methodology. The new method consists of a multi-part inquiry into pain and other symptoms over the past week, in addition to the usual “for at least three months” and “nothing else explains your symptoms” requirements.

There are basically two sets of scores  — the WPI and the SS. The WPI (Widespread Pain Index) is based on nineteen separate body areas (upper left arm, lower right leg, lower back, etc.) and your experience of pain in those areas over the prior week. The total number of these areas in which you’ve experienced pain is your WPI score.

Next, the inquiry looks at your Symptom Severity (SS) score. This is a range from 0 to 12, and is calculated by your assessment of the severity of your fatigue, waking unrefreshed, and cognitive impairment symptoms, plus how many other symptoms out of a prescribed list you’ve experienced. The diagnosis looks at both sets of scores – you need a certain score on both matrices in order to receive the FM diagnosis.

Potential Impact of New Fibromyalgia Criteria

FMNetwork has a somewhat critical take on the new methodology along with a fairly short survey you can take to see if you would fit the new diagnostic criteria. It took me about ten minutes to complete, is confidential (no identifying information other than age and gender are required), and gives you a much clearer idea of what the new criteria are all about than simply reading a blog post. The link to the survey is at the bottom of the FMNetwork post linked to earlier in this paragraph.

There is also a PDF copy of the survey you can print out and take with you to your doctor.

So what’s your take on the new criteria? I understand the skepticism voiced in the FMNetwork blog post — that this might dilute the “meaning” of fibromyalgia, that it could lead to more diagnosed cases which could further undermine credibility … I have to disagree.

It seems to me that we’re no longer simply talking about pain when we discuss diagnoses, but the entire range of all of our symptoms. I don’t see how that can be anything other than a positive development. Pain is always a subjective topic — your “2 on a scale of 1 to 10″ might feel like my “8,” for all we know — and that’s one reason, I think, why it’s always subject to such skepticism from others. But when we’re talking about things like (sorry) diarrhea and constipation, blurred vision, bladder problems, cognitive difficulties … this paints a far more accurate picture of what it means to have FM.

Of course, it’s far too early to make any grand pronouncements on this topic right now. It’ll take medical providers using the new criteria for some extended period of time before we can say with certainty what effect it will have.

Grateful hat-tip to Deanna’s Blog for the head’s up on this.

Empowered patients.

Seems everyone’s talking about this phrase lately. Heck, even CNN has a whole section devoted to the concept.

But what does it mean? And who are those empowered patients? Most importantly, what secrets do they know that you don’t? How can you use those secrets to improve your own pain management plan and quality of life?

What Does “Empowered Patient” Mean?

It might be easier to start with defining the opposite of “empowered patient” — what I’ll call the disenfranchised patient.

This is someone whose state of health and well-being have been completely handed over to the responsibility of others. She’s thoroughly dependent on what the doctor says. She doesn’t ask questions. She doesn’t understand her own condition or what her options are.

Like a kindergartener, she simply follows the instructions of the authority figure who tells her what to do — usually a doctor, sometimes a well-meaning friend or family member, or even a specific website.

Compare that patient to the empowered patient. Here’s someone who treats her medical care as a team task — and she’s the captain of that team. She listens to the advice she’s given but she makes her own decisions about her health care and pain management plan.

Most importantly, she’s a fully invested and active partner in her own well-being.

The Seven Secrets of the Empowered Chronic Pain Patient

What do these empowered patients have to teach the rest of us?

I’ve done a lot of research on the subject, spoken with many patients who fit that description, and come up with a list of six “secrets” that they understand completely — secrets that aren’t common knowledge, but that can turn anyone into a truly empowered patient.

1. Do Your Own Research Into Your Chronic Pain Condition

The empowered chronic pain patient knows that she’s just as capable of understanding her condition and keeping on top of recent developments — maybe even more so — as her medical team. After all, her doctors have lots of patients with many different conditions; the patient has one (or perhaps a few) conditions to keep track of.  She doesn’t abdicate the responsibility for maintaining that information to her doctor.

However, we all know too well that there’s a real problem with much of the health information available on the web — much of it’s patently wrong, some of it’s even dangerous, and it’s really tough for the lay person to figure out which sources are trustworthy. How can you tell the difference between a reliable site and one that’s better ignored?

Start with the .gov and .edu sites. These government and university research sites are generally considered by most health care experts to be the most reliable. For the government sites, they’re also typically written at a level that’s easier to understand for the lay person, because the audience of those sites is generally the patient herself.

Once you have a basic understanding of the parameters of your condition, you can expand your knowledge by searching for other sites dedicated to your condition. An excellent resource is WebMD, which has several condition-specific centers on its site where other patients share tips, resources, and new information. (I’m a member of the Fibromyalgia Exchange, one of those centers, and I can personally attest that it’s a terrific group, providing support as well as information.)

Another tip: set up Google Alerts including your condition’s name to deliver news about your illness straight to your inbox. This is an excellent way to stay up to date with recent developments.

2.  Demand — And Give — Respect to Your Pain Management Team Members

Especially for conditions like ME/CFS and fibromyalgia, which are plagued by a small but vocal minority of medical professionals who doubt the disease’s very existence, it can be difficult for chronic pain patients to foster solid, helpful relationships with the doctors they see regularly.

For many of us raised to accept a doctor’s words unquestioningly, it can be difficult to insist on being treated with respect.

The bottom line, though, is this: if your doctor doubts your illness exists, or thinks it’s “all in your head,” how can he or she treat you properly at all? You’re just wasting his or her time, as well as yours. Find another doctor, one who’s better equipped to treat your condition.

Insisting on respect doesn’t mean treating the physician poorly, however. Just as with all our relationships in this world, the best doctor/patient relationships are fostered on mutual respect.

You can read further tips on developing a better relationship with your treating physicians here.

3.  Prepare for Visits to Your Doctor(s)

We’re all guilty of it at some point or another: mumbling our way through a doctor’s visit, then realizing when you get back in your car that you forgot to ask the doctor about eight important questions and tell her about two new symptoms.

The culprit here is our failure to prepare for each and every visit as if it were a crucial business meeting. You wouldn’t go into a meeting with your boss for your annual review unprepared, would you?

Similarly, you should take the time before each impending visit to plan exactly what you want to get out of that visit.

Specific suggestions:

• Keep a list of questions. Start this written list as soon as the last visit is over, and add to it periodically. Before your visit, review that list and select the most important issues to discuss.
• Bring a tape recorder or a friend. It’s all too easy to forget every single word that’s exchanged between you and your doctor when you’re focused on trying to participate in the conversation. Instead of delaying things and interrupting the flow of conversation with written notes, consider taking a tape recorder or a friend into your appointment. Turn on the recorder (ask permission first!) or tell the friend to take notes, then you can focus on communicating with your physician.
• Bring a summarized version of your pain log. (See secret #5 for more information on this.) Being able to show your physician the ups and downs of your pain, along with any patterns you’ve been able to discern can greatly improve her ability to make the correct adjustments to your pain management plan.
• Take printouts of research or new treatments you want to ask about. Doctors are only human, and it’s easy for them to get distracted or not pay enough attention (or just not understand) what we’re saying when we ask about new research or developments into our conditions. During your periodic research (see secret #1, above), collect printouts of those points you’d like to ask your doctor more about, especially if it concerns a new treatment protocol. If she doesn’t have time to review it fully during your visit, you can leave the printout with her and get back in touch later.

4.  Kill The Doorknob Moment Dead

There’s one point that comes in almost every doctor’s visit when most doctors say the patient’s goals go way off track. It’s also the moment that’s responsible, to a large degree, for the backlog of patients in the waiting room. It’s so common that doctors even have their own name for it: the doorknob moment.

You’ve experienced this yourself, undoubtedly: the visit’s almost over, the doctor’s given you marching orders, her hand is on the doorknob to open the door and leave, and you say “Oh, by the way, doctor, there’s this thing I wanted to ask you about …”

And almost invariably, that little thing that the patient almost forgot to ask? Is really the most important thing she could ask. It’s what’s been bugging her most. It may even be why she made a special appointment.

Keeping and bringing your list of questions to the visit will go a long way to killing this moment, but the empowered patient takes it a step further. She prioritizes her list and asks those questions right up front. This sets the tone and agenda for the visit, and gets the doctor’s mindframe where it needs to be (“OK, she’s concerned about a, b, and c, and a’s the most important thing for me to focus on right now…”).

Simply put, you’ll get better care by killing the doorknob moment dead.

5.  Keep a Pain Log

Arguably the greatest tool in your arsenal against chronic pain, the pain log is simply any collection of data that you maintain on an ongoing basis about the key aspects of your condition. Empowered patients use the pain log to help their doctors pinpoint potential patters in their pain experience. (Wow, that was a lot of alliteration for one sentence.)

At its most basic, a pain log would simply track pain level and quality over time. For even more control over your treatment options, however, consider including notes on other aspects of your life that can impact your pain: sleep, diet, exercise, mood, stress level, etc.

The pain log can be “digital” or “analog.”  I formerly used a moleskine, but have moved to a text document on my computer, perpetualy docked to my desktop. When I’m ready for a doctor’s visit, I simply pull it up and print out the changes since the last visit.

There’s also a new site called Relief InSite that appears to be a web-based version of the pain log. It also allows your doctor to log in and view your notes, which has a whole host of potential benefits. (NB: If that sounds like something you’d be interested in, please give it a try and then drop me a note here or on Twitter to let me know what you think so I can write about this site in more detail later, OK?)

Whatever format you choose, the two main components of a successful pain log are:

1. Keeping it consistently over a period of time; and
2. Being completely, brutally honest in it.

6.  Trust Your Instincts

Finally, the single most important secret that an empowered patient knows is to pay attention to that little nagging voice inside. Accounts of women who insisted something was wrong, only to find out from shocked ER staff later that they were having heart attacks, are all too common, unfortunately.

As long as you haven’t been diagnosed as a hypochondriac, your intuition can be a powerful ally in getting the right diagnosis. Somehow, our bodies know — and tell us, through often-subtle physiological clues  – when something’s seriously wrong.

It’s important not to get carried away, of course — headaches are usually not indicative of brain tumors, but stressing about it too much can wreak serious havoc on your health — but if you really feel something’s wrong, don’t settle for a dismissal. Get second opinions, insist on tests, and above all, try to stay calm.

Finally, if you feel you’re not able to be your own advocate, then find an extroverted friend or family member who’s willing to be your advocate during visits that are likely to be contentious.

Empowerment Is Within Your Control

By learning and putting into practice these six secrets of the empowered chronic pain patient, you can improve both your quality of care, as well as your quality of life.

Above all, remind yourself — out loud, if you need to, and often — that you are priceless, and therefore worthy of the absolute best in medical care.

Put forth the effort to become your own team leader. I guarantee you the results are worthwhile.

Are you an empowered patient? What secrets or tips would you share with other chronic pain patients to get the most out of their health care programs?

After much debate (some of it pretty damned vicious), President Obama finally signed into law the new health care reform legislation that will change the medical landscape for millions of Americans. But what does this controversial and fairly confusing legislative package mean for those of us with chronic pain conditions?

I should start with a warning: I used to be a lawyer. That means: (A) I no longer am a lawyer; (B) nothing herein is legal advice; (C) I may or may not have any special advantages when it comes to deciphering Congress-speak in this matter. So, read as much on this from other reputable sources as you can before you start making plans and decisions based on my interpretations of the reform bill, OK?

That caveat out of the way, let’s look at the bill version that was finally passed and sent to the White House for the President’s signature …

Facts and Figures on Health Care Reform

The numbers vary from source to source, but it looks as if about 32 million Americans will now have a better chance of getting insurance under the new law. Note: that doesn’t read “will have insurance” but “will have a better chance” of becoming insured. That’s a crucial distinction.

The new law mandates coverage for all but a small portion of Americans. Those excluded would be folks who seriously cannot afford it, Native Americans, and those who object to insurance on religious grounds.

2014 is the key year here: that’s when the majority of the provisions become effective. However, until then there are stop-gap provisions that will also impact folks without insurance. Of particular interest to chronic pain patients is the “temporary high-risk pool” provision.

Temporary High-Risk Pool and Pre-existing Conditions

Once the key provisions go into effect in 2014, those with pre-existing conditions (such as fibromyalgia and other chronic pain conditions) can no longer be denied coverage on that basis. Until then, starting 90 days from now, we can tap into the temporary high-risk pool for coverage, with subsidized premiums. Cost-sharing is limited to the figures applicable to the health savings account provisions, or $5,950 per individual and $11,900 per family (2010 figures; these are adjusted periodically).

Health Care Exchanges

The law now provides for state-based non-profit-administered “exchanges” which, if I’m reading this correctly, will allow individuals to buy into plans in groups of 100 or more.

This might be very beneficial for those of us who eke out our livings through self-employment, and for whom historically insurance has been difficult to come by, and prohibitively expensive when available (as compared to the group plans a W-2 worker’s employer can provide).

Overall Cost Restrictions

The bill also puts some caps or limitations on health care expenses. For instance, those with incomes equal to or less than 400% of the federal poverty line will have their out-of-pocket expenses capped at a certain amount.

More Information

For more information, including a look at how the new law will impact the 15 million Americans who are unemployed, see this article in Newsweek online.

Edit: Here’s another good review of the provisions — basically same information as in this post but some additional commentary you might find useful.

I don’t know about you, but I don’t generally pay others to abuse me.

Now, I have the greatest respect for the medical profession. My own mom (rest her soul) was a lifelong nurse and nursing teacher, and I’ve been blessed with several good doctors. I’ve got nothing to complain of, currently.

But not all fibromyalgia and chronic pain patients are so lucky. And I think it’s high time we blew the lid off the big not-so-secret secret behind dealing with chronic pain: sometimes, our biggest detractors wear white coats.

Call it the God complex. Call it institutional arrogance. Call it personal fear or ignorance or – heck, call it Bertha, if you like. But whatever the cause, we deal with bad doctors and nurses all the time.

Whether it’s the general practitioner who thinks you’re making your pain up, or the nurse who’s consistently rude to you in the exam room when you ask for a medication refill, those stories need to be told, and I’d like to tell ‘em here.

So send me your bad doctor/bad nurse stories — you can find me on Twitter, or use the contact form here on this site. Be sure to tell me how you dealt with the problem, if you did deal with it, or whether you changed doctors as a result of this encounter.

One request: please leave out any identifying personal information for the person in question. When I share the stories, I’ll redact all of your personal info as well, of course. If you want to be really anonymous, just leave me a comment to this post.

Let’s get this epidemic problem out of the dark corners and bring it into the light, where it belongs.

For those of us who’ve been living with ME/CFS or fibromyalgia or any other chronic pain condition for a few years, it might be hard to recall those early days after we were first (finally!) diagnosed.

But for those people who have just gone through that experience, you may be feeling a myriad of competing emotions, stirred together and topped off with a healthy measure of “What the heck do I do now?”

Here are ten tips to help you manage the confusion and overwhelm following a diagnosis of a chronic pain condition.

1: Understand Your Chronic Pain

While it’s unquestionably true that the experience of a chronic pain condition can vary drastically from person to person, you should take time now to find out what you’re dealing with, as soon as possible. Find out as much as you can about the “usual” progression of your disease or condition, as well as the range of symptoms and associated conditions you might expect along the way.

Knowing what to expect is important when you’re beginning a long journey with a new condition. You’ll find out soon enough that every new ache and pain and discomfort can soon make you nuts, wondering “Is this something to worry about? Or is this just part of my condition?”

If you can get as much information as possible at the outset, you can save yourself some anxiety, and make better decisions about your medical care.

2: Stay As Active As Possible

Study after study shows the benefits of light exercise for chronic pain patients. (Just this week, we hear news of a study showing adolescents with fibromyalgia experience less pain if they maintain some level of activity — Doctor’s Guide, via Fighting Fatigue.

Good choices for those living with chronic pain conditions include walking, swimming, yoga, and Pilates. Start with a one-on-one class, if you can — and if your area is lucky enough to have such a person, find a teacher with experience dealing with students who have chronic pain conditions. (Tip: Identify all area yoga teachers, for example, then call each studio and ask if any teacher there has dealt with your disease or condition, either personally or through students.)

For more on getting an exercise program in place while you’re coping with chronic pain, see my recent post “Exercise and Fibromyalgia: A Love/Hate Affair.”

3: Make New Friends Who Know What You’re Going Through

Support groups can help — but they can also hurt. Be careful with this one.

Here’s why: How we talk to ourselves about our pain has a definite, measurable effect on our perception of that pain. Given that we all have a right to put a voice to our pain, to tell our stories and have them understood, a support group would be a natural way to explore that process.

However, the catch is that when we all tell our similar-yet-different stories, we’re all susceptible to a perceived or real increase in pain.

So, it’s important to find a group that encourages healthful, positive ways of dealing with the disease.

This is not to say that you should tell your story only to Pollyannas, who will then tell you to smell the roses and just get moving or try this, that, or the other alternative treatment and you’ll be right as rain. That, to my way of thinking at least, would be worse than being hyper-aware of my pain, frankly.

What I am saying is this: look for a group that focuses on solutions — that allows its members to freely discuss their stories and rant and rave if they like, but that, in the final analysis, wants to help each other do better.

That’s real support. Otherwise, it’s just a bitch session over coffee and for that? I have my best friend.

4: Keep A Wellness Log to Track Your Symptoms

Get in the habit of keeping a daily record of your symptoms, together with any factor that can affect your experience of your pain. You can do this in a computer file — a plain text document, for instance, or an Excel spreadsheet if you’re feeling really ambitious.

Or you can get a simple flip-top reporter’s moleskine, which is what I use. Here’s an example of this model, from Amazon (affiliate link).

At a minimum, you should track:

• Your daily food intake
• All medications, including time and dosage
• All supplements you take, including time and dosage
• Your sleep — duration and quality
• Your activity level, including household chores and more formal exercise
• Any significant alterations in mood and stress level
• And, of course, your symptoms, preferably ranked on some sort of numerical scale

A note about pain perception scales: whether you use the traditional “1 to 10″ or some other model, ranking your pain is not about minimizing it or defining it. Rather, it’s merely a useful tracking tool for you and your physicians to be able to see changes over a period of time.

For instance: if you experience a flare-up within 24 hours after you attend a particularly strenuous yoga class, and this continues to occur as a pattern, you can make an informed choice about whether a more slow-paced or restorative class focus might be more beneficial to you.

5: Talk To Your Family & Significant Other About Your New Journey Together

Get those close to you on board with the concept of this new experience as a marathon, not a sprint. It will affect all of you, and you should start now to cultivate a habit of open, honest communication with them about your condition.

Sit down with them for an extended “family meeting” and make sure you cover the following points at a minimum:

• Your diagnosis
• Your prognosis
• Likely symptoms you may experience — even if you’ve had them already, you need to make sure they understand, very simply, how you feel
• What they can expect from you
• What you need from them

Cultivate a “team approach” right from the start, and then when things inevitably get more stressful down the line, you’ll all feel more comfortable having an honest talk about it sooner rather than waiting until feelings reach the boiling point.

6: Monitor Your Sleep

Changes in your condition often manifest first in your sleep patterns. Note these changes on a daily basis in your wellness log, but also pay attention to your “sleep hygiene” — the practices and “rituals” you’ve developed, sometimes unconsciously, surrounding your nightly sleep.

In many cases, simple adjustments in your nighttime rituals can enhance the quality of your sleep. But first, you have to know what you’re doing now.

Take note of whether you read or watch television; what you read or watch; what music you listen to; the temperature of the water if you take a bath; how close to bedtime you last ate or drank anything; how often you get up to go to the bathroom at night …

These and other factors can indicate a potential problem with your sleep patterns, and you can then work to change those rituals to increase your body’s chances to heal itself while it rests.

7: Revise Your Expectations of Yourself

While I don’t advocate thinking of yourself as a victim or a patient, you will have to wrap your brain around a changed reality, at least for the time being.

Normally, by the time you reach a diagnosis, you’ve already had some period of time where you’ve experienced the pain symptoms. But it’s all too human to think “This is just temporary. As soon as I find out what it is, I can cure it and I’ll feel all right again.”

Of course, everyone hopes that’s the case. But the sad truth is that with most chronic pain conditions, we have no cures. We have treatments, and many of them may offer substantial relief.

But even the mere act of finding those treatments that are successful for your disease can be quite exhausting. So lower your expectations of yourself for awhile, while you get acquainted with your condition and your changed reality.

8: Clear Your Plate

Healing from a chronic pain condition takes an awful lot of energy. Don’t let self-imposed feelings of obligation diffuse that energy unhelpfully.

Think carefully about obligations you’ve incurred in the past, and ask yourself a hard question: If this obligation presented itself to me today, would I say “yes”, knowing it takes energy and time away from my efforts to heal?

Some obligations you can’t — and don’t want to — give up. Although child care is a taxing prospect even for the perfectly healthy, for instance, I’d never let my child live somewhere else, even though she has many relatives who love her dearly and would care for her if I couldn’t.

The truth, for me, is that caring for my daughter gives me as much joy and pleasure as it takes away in energy or time. So — again, for me — this is not an acceptable obligation to walk away from.

But a great many of your obligations can and should be renegotiated. Your priority must be your own health. Don’t just give lip service to this idea. Do yourself the honor of making this a true commitment, and let go of those things that impede your progress where you can.

9: Practice Radical Self-Care

Taking care of yourself is about to take on a whole new meaning for you.

Radical self-care is all about protecting yourself, knowing that when we put ourselves first, we are then more capable of helping others.

Radical self-care is a concept that deserves a more thorough treatment than a single mention in one post, and it’s a favorite topic of mine that I’ll address in more depth in future posts. For now, just be aware of what it encompasses:

• Eating the highest-quality whole foods you can afford and drinking the most healthful beverages only
• Taking total care with and paying perfect attention to your medications and supplements
• Dedicating sufficient hours to restful sleep in the most serene, comforting environment you can manage to create
• Daily meditation (and prayer, if it comports with your spiritual beliefs)
• Daily movement and light exercise — always honoring your limits
• Integrity in your commitments to yourself
• Managing your expectations of yourself
• Maintaining positive self-talk (see the next item in this article)
• Practicing impeccable hygiene on a daily basis

10: Learn and Change Your Inner Monologue

The words we use in our thoughts and the long-running “tapes” that keep playing in our heads have real, concrete effects on our physical lives.

Pay some cold, hard attention to the inner monologue you’ve got running now. Is it full of hopelessness and despair? Is it based on fear?

If so, welcome to the human race. It’s only natural, once the giddiness of finally obtaining a name for the mysterious beast you’ve been fighting for so long evaporates, to find yourself focusing on the end game and wondering just how long you’re going to have to struggle with this pain.

While it’s perfectly understandable, and you should absolutely acknowledge and deal with all your feelings, including the so-called negative ones, you should take care not to allow those feelings to become the source of your inner self-talk.

Take some time every day to counteract those normal feelings of anxiety and worry with positive imagery and messages.

Tell yourself the truth — you don’t know how long this will last but you are doing everything humanly possible to manage it and heal from it. You’re taking radical care of yourself, you’ve put yourself and your own wellbeing ahead of everything, you’re in the process of renegotiating obligations that prevent your healing, and progress is being made every single day in the fight against chronic pain.

Let that be your gift to yourself. It really does help keep your energy and your spirits up — and yes, it does make a difference in how you manage and deal with your chronic pain.

To all my fellow old-timers, what did I miss? What advice would you give the newly diagnosed? Leave your suggestions in the comments!

@PaperBackChic on Twitter alerted the world to this story, which is linked to off the main FMS Community page.

I read it, and was appalled — you will be, too. (Or should be.)  I also have questions, but first, let’s recap.  From the page, which is titled “Fibromyalgia — A Horror Story,” we gather the following salient points — the names have been changed, according to the unnamed author of the piece:

• Rita, the patient in question, has been diagnosed with fibromyalgia, a thyroid condition, and diabetes. She also has IBS (irritable bowel syndrome, which is often associated with fibromyalgia).
• She approached the doctor in question (“Dr. Jones”) for treatment of the thyroid condition. However, Dr. Jones also knew about her earlier FMS diagnosis.
• On an early visit, despite exhibiting some symptoms suggestive of cardiac issues, the doctor sent her husband to get an OTC medication. Yet when the husband himself showed up at another point sweating profusely, the doctor immediately ordered several tests (I’m assuming to rule out cardiac trouble).
• The doctor told Rita that his best friend has ALS and that Rita had no right to “whine” about her problems, the clear implication being that ALS is a real disease but FMS … isn’t?
• Despite several therapists and psychologists concurring that Rita had no psychological issues, other than the mild and occasional depressive episode that accompanies nearly all chronic pain conditions, Dr. Jones repeatedly insisted that Rita had some sort of psychological disorder. This insistence apparently was the primary focus of her visits with this doctor, instead of the thyroid treatment she had sought from him.
• Ultimately, after an abusive visit, Rita lost her cool and said “Maybe I should stop taking my medications and die. Then maybe an autopsy would prove that I am sick!”
• That was all the ammunition this doctor needed to have Rita held on a 72-hour suicide watch in a local mental health facility based on his insistence that she was bipolar and a danger to herself and/or others.

I won’t go into the horrors of that situation. Anyone with half a brain can imagine. All I can think right now is, “Here we go again.” But before I rant, a warning to all chronic pain patients — and a “Yeah BUT” to that warning, which is just as important — so promise me you’ll read both, OK? OK — here’s the warning:

If you say ANYTHING in front of a doctor that could potentially be interpreted as a threat to kill yourself, or harm anyone else — even if it’s said off the cuff, or in jest — you could be subjected to a hold just like Rita was.

Just don’t do it. Ever.  Now, here’s the Yeah BUT:

If you are feeling suicidal, you need to tell your therapist or doctor immediately and ask for help.

I hope that makes sense. Where Rita went wrong was in assuming that Dr. Jones would act rationally, even after his refusal to treat her for the problem she came to him for — the thyroid treatment — made it patently clear that he was not rational.

Rita should also have bolted the minute this idiot opened his mouth to denigrate her, or her condition. The second he didn’t at least make an inquiry into a possible cardiac issue with her symptoms.

Am I being too tough on Rita? No, not at all — I hope it’s clear to all that the problem here was Dr. Jones, not Rita.

But here’s the thing, friends: There are LOTS of Dr. Joneses out there, and they cannot be allowed to treat us. As soon as you know or even have reason to suspect that you’ve found an Unbeliever, you need to leave.

I know it’s unfair. It’s putting the responsibility on you, the patient, instead of (pardon me) the asshole who’s causing the problem.  You shouldn’t have to go find another doctor to treat you like a human being with rationality and respect.

But you do, and you must.

Guys — by which I mean ladies and gentlemen and children of all ages and their parents — we can no longer afford to mollycoddle these medical pretenders providers. I used to think the unbelievers were a small minority — a vocal one, to be sure, but small enough to ignore.

Then came the NY Times article questioning the “realness” of our very real disease. Then came another piece, this one by CNN. And now, with Rita’s story — with the story recently of a woman suffering from FMS who will go down in history as the first person in the UK with “fibromyalgia” as the cause of her death, all because her Dr. Jones thought she was crazy, too — well, folks, the conclusion is inescapable:

We are at war.

And it’s time we (by which I mean all chronic pain patients) started getting a little more assertive about our rights and our health.

Talking To Your Doctor About Chronic Pain Is Hard

UPDATE: This post has been updated with links to additional tips from About.com and an organization called Speak Up. See the end of the post for the links!

If you’ve ever had the experience of talking to your doctor about your chronic pain condition and feeling distinctly unheard, this post is for you.

Why Communicating About Pain Is So Difficult

Pain is, by nature, a subjective experience. We know that, even with the same diagnosis, any two patients may well experience their symptoms in quite different ways. Even within the same patient’s experience, the perception of pain level, intensity, and quality may differ wildly from day to day.

Add to this subjective nature the sometimes-significant impacts that outside factors may have on our pain levels — diet, exercise or movement, mental stress, difficult relationships, sleep quality/quantity — and it’s no wonder that we have trouble expressing our pain.

But communication requires two actions — talking and listening/interpreting. As hard as it is for you to explain your pain to another person, it’s equally hard for the second person to interpret what you say “correctly.” Even using that tired old trope, the 1 to 10 pain scale (which, for many reasons, ought to be done away with completely), isn’t much help.

For instance, you and I may both say we feel our fibromyalgia pain at a level of 8. But who’s to say that your “8″ is my “8″, or equivalent to it? We can’t know that. All I can take from your statement that “My pain is at a level 8″ is that, for you, at this moment in time, you’re about two steps away from feeling complete and total agony, and about eight steps away from feeling no pain at all — whatever that means to you.

Doctors Ought to Be Different

None of which is to say that your medical professionals should be given a pass on taking your pain seriously. Doctors can and ought to be different. With their years of medical training and hands-on experience with both acute and chronic pain, our physicians must be held to a much higher standard of communication and empathy.

Yet, too often, we all hear stories about how doctors — even those who have treated patients for years before the onset of the chronic pain condition — dismiss patients’ reports of chronic pain as being “all in your head” or “stress-related” or worse.  It’s no secret in the fibromyalgia community, for instance, that many MDs and nurses think that any fibro patient who asks about medication is simply drug-seeking.

You don’t need to walk a mile in a fibromite’s shoes to know that this is true. Look at any episode of just about any medical drama on television where reports of mysterious pain play a part in the patient of the week’s diagnosis. See how they roll their eyes, or dismiss the reports completely if the MRI is “clear.” This is deeply ingrained and it’s insidious.

Fear of Legal Repercussions Among Physicians For Prescribing Pain Medication

Then again, doctors have a not-completely-irrational fear of prescribing  medication for chronic pain. Reports of doctors losing their licenses or even facing criminal prosecution for prescription practices are all too common. Some of these prosecutions are, undoubtedly, warranted. But whether they are or aren’t is almost beside the point; the impact on other physicians is a definite chilling effect on the whole notion of medicating against pain.

If the war on drugs makes doctors squeamish about treating chronic pain assertively, then it only stands to reason that they’ll be less receptive to taking pain reports seriously. Some MDs attitudes seem to be “If I can’t treat it, it isn’t real.” Of course, that’s nonsense, but even so, a subjective fear can and will affect a person’s willingness to enter into an open dialogue about that subject. We don’t want to face what we can’t control. Perhaps this is even more true for physicians who are trained and groomed to take almost godlike control over their patients’ physical processes.

Seven Steps to Make Talking to Your Doctors More Effective

Have hope, however. There are things you can do to make communication with your physician more effective. Seven suggestions are listed below.

1: Come Prepared

Sitting in the waiting room, flipping through magazines that are three years old – now is not the time to start thinking about what you want to say to your doctor! Start preparing for the next doctor’s visit on the day after the last visit, ideally. At a minimum, take a half-hour or so to jot down your questions and concerns the day before the visit. Then, sleep on it. Give yourself some time to think of the four or so things you left off the list due to your fibro fog!

2: Bring The Logbook

One of the most useful tools in the chronic pain patient’s arsenal is The Logbook. You can call it a diary, your notes, a list, or Babe the Pig if you want, but whatever you call it, KEEP ONE.  Whether it’s a separate legal pad, a computer file, a composition book you “borrowed” from your kid’s school supplies, or the back of a napkin, it’s a very handy thing to have.

In it, you’ll want to note, on an ongoing, daily basis, the following information:

• basic information about your diet
• list of medications/supplements you take, including dosages and times
• brief mention of symptoms and description of their intensity, frequency, duration, and nature
• information about the quality and quantity of your rest
• a list of any exercise and/or movement you undertake
• your emotional/mental state (it’s just as much a part of your health as your physical pain)

While it’s a lot of work to keep all this information updated every single day, it will truly be an invaluable resource for both you and your doctor. It’s worth the trouble to keep this logbook going and constantly updated. (Mine is a dedicated moleskine journal. I get them in packs of three for about $12 from Amazon.com.)

3: Do Your Research …

Before you go to the doctor for your next visit, take your list of questions that you prepared in step #1 and sit down in front of the computer for a half hour or so.  Look for reliable information about any new symptoms you’re experiencing, or medications you may have heard about, or side effects that you’re concerned about. Note those in your logbook.

If you really want to help your doctor (or eliminate all of his/her excuses!), take in printed copies of your resources. Print off the page from the website, showing the URL, and hand that to him/her at the examination.

4. … But Use Some Common Sense

When you’re looking at new resources, especially ones on the web, please keep in mind a couple of points. First, anyone can write anything on the web. There are no checks and balances, and this means that there is a lot of really bad, if not downright harmful information floating around out there.

Second, with printed resources that are conventionally published, manuscripts typically go through some kind of vetting or peer review process, especially with medical issues. While this process is far from infallible, it does tend to give the conventionally published book a bit more authority, or at the very least, the appearance of more authority, than does “Joe’sFibroPage.com.”

So pick your resources carefully, and recognize upfront that your MD may well be skeptical, with good reason.

5: Respect Your Doctor’s Education and Experience

I can already hear some hackles being raised out there. But hear me out – there’s a very practical reason why you don’t want to go in to a doctor-debate all hotheaded, indignant, and dismissive.

Your MD went to school for a long time before he was even allowed to call himself a doctor. That was followed by years of interning and residency, and possibly a long board certification process as well. He is not a god, no matter what he may secretly believe. But he is a human being with a certain amount of expertise, and he is entitled to a modicum of respect, at the very least.

If you reject that out of hand, fine, but consider this: how would you react if someone came up to you and in a confrontational, accusatory tone began an argument with you? When that person began dismissing your opinions and getting very defensive, how do you think you’d feel about continuing the discussion with him or her?

Resist if you like, but good communication skills require a courteous, respectful tone.

6: Demand the Same From Your Doctor

While it’s important to keep your cool when speaking with your doctor, and to use a courteous, respectful tone, it’s also important not to inadvertently teach your doctor to abuse your good nature. If things get out of hand — if the doctor says something inappropriate, for instance, or begins to dismiss you before the discussion is through — you’re going to have to speak up.

For some folks, this is no problem. But for many of us, speaking up in this situation is downright scary. If you feel you might want to run and hide, or avoid the conflict altogether, it’s best to spend some time with a friend or family member roleplaying this scenario before the doctor’s visit. This will give you some practice thinking on your feet, and simultaneously getting comfortable standing up for yourself in difficult situations.

Then, if the worst does happen, you can pull yourself up straighter, adopt your “I’m serious and you’d best listen” face, and say:

• “Respectfully, doctor, if you cannot take my symptoms seriously, I will be forced to take my medical files and find a physician who is more equipped to treat my case.”
• “Doctor, I have no problem having a healthy discussion, even if we disagree. But I will not be spoken to condescendingly, and I will not be dismissed. If it happens again, I will leave and I will take my files with me to find a doctor who knows how to communicate respectfully with patients.”
• “Excuse me, I’m not finished yet. I’d prefer to discuss these concerns with you now.”

One word of caution: if you issue an ultimatum (as the first two examples do), you must be prepared to follow through with it. I could write an entire post just on this point alone but for now, know this: it’s your body. Your money. Your life. You are entitled to be treated with respect and to have your concerns taken seriously by your treating physician. You owe him nothing more than respect and payment for services rendered. That’s it.  If he isn’t willing to live up to his end of the bargain, you have no choice but to find a more honorable doctor.

End of sermon.

7: Take a tape recorder, or another person.

This is probably the single most helpful tip I ever received as a patient. When you’re stressed out about your illness, nervous about having this discussion in the first place, and probably in pain to boot, you’re probably not going to be listening as carefully as you’d like.

You could take notes with pen and paper, but that takes you out of the conversation. You have to stop listening fully, in order to think about what to write, and then write it down. Then it takes a bit of time to get back in the conversation. It’s just not effective, especially when doctors are limiting their time with patients.

The solution: tape record the conversation, or have someone else there to take notes and act as a backup to your memory. If you’re concerned about bringing either another person or a tape recorder into the conversation, please know that most all doctors are used to it, or at least won’t be surprised by it. Many physicians advocate the practice themselves. They know it’s a lot of information to take in at a stressful time.

Simply make sure you ask if it’s all right with the doctor if you record the conversation (or have your friend take notes). Almost all doctors will say “sure, go ahead.”

What do you do if they don’t — if they protest, or say they’re not comfortable with that? Well, you have a few options. You can insist. You can walk out. You can give in without another word. Or, you can ask your doctor for more information. What bugs him specifically about the recorder? Why does she not feel comfortable with another person in the room? Then you can address the real concern.

If you can’t reach an agreement, then you’ll have to consider whether this doctor is the right one for you. Personally, I’d be a little suspicious of a physician who adamantly refuses to let me have a little backup in the exam room.

Conclusion: Speak Out!

Talking to your doctor about your pain is unquestionably difficult, but it’s not impossible. Follow these seven tips and you’ll be more comfortable with it on the next visit.

What do you think? What do you do to help your doctor understand your pain? Have you ever had a doctor dismiss your pain? How did you handle the situation?

UPDATE

Take a look at About.com’s Fibromyalgia and CFS Blog for some more tips on communicating with your doctors. Also, visit Speak Up’s website – this is an initiative from The Joint Commission with the mission to improve communications between patients and doctors. That site’s also been added to the Resources page here at The Tramadol Diaries.