Tag Archives: chronic pain

The Wall: Stress Will Make You Worthless

Image of a brick wall

Harsh words in that headline, and I mean every single one of them.

Here’s what happened: Last week, my housing plans fell through. I’d been staying with an acquaintance, which was always a temporary solution and the plan was that my daughter and I would be moving in with another friend and her family, to share expenses. Then friend’s house had a temper tantrum, losing both its air conditioning and the downstairs plumbing in the space of 48 hours.

So I had to scramble to find something else. I’d had a back-up plan but in the comedy of errors that is my life, that also imploded hilariously, leaving me with about one week in which to find a place to live.

So, with the aid of a friend and Craigslist, I set about scrambling for Plan C. Thankfully, I now have Plans C AND D, and that’s pretty awesome to have options — nothing firm yet, but we’ll know tomorrow, almost surely by Tuesday at the latest.

OK, crisis averted. But the thing that struck me like a ton of bricks late Friday night, after five full days of escalating efforts and exponentially skyrocketing stress levels, was summed up in this Facebook status update:

Screenshot of Facebook update about stress and energy levels

Something Alice Cooper can’t cure? That’s new …

In all seriousness, this feeling — as if someone tilted me over and let everything run right out into the ground — was totally new to me, despite ten-plus years of living with fibromyalgia and degenerative disk disease.

See, I’ve always been a very optimistic person. And the best thing about that kind of optimism, the kind that’s bred into your bones, is that it provides its own energy source. Even in the worst of times, the certain conviction that things will get better keeps me going.

But not this time. I hit the wall. I couldn’t move. I couldn’t think. I couldn’t even write, which has always been my best form of therapy.

I didn’t know what to do. So I went to bed. (And then promptly stayed awake for four more hours while the current housemates sang Venetian folk songs and argued about who was “right from the beginning.” Sigh.)

The next day, I felt much better. So we can assume fairly safely that if you hit this stress-induced wall, sleep helps.

What else makes it better? I honestly don’t know. I’ve never felt that way before so it’s a completely new experience. So I’m asking you all — have you ever experienced The Wall? What helped, if anything? What doesn’t work? Let’s share our collective wisdom!

Carved stone Buddha sitting in meditation

How Meditation Relieves Chronic Pain

In order to understand the process by which meditation works to improve our experiences with chronic pain, we should examine the evidence supporting the premise itself. In short: how do we know that meditation works at all?

Carved stone Buddha sitting in meditation Studies Establish Meditation’s Effectiveness in Chronic Pain Management

Numerous studies have consistently found the same thing: meditation works on chronic pain — not just in our emotional reaction to it, but also the pain itself.

One study, published in the Journal of Neuroscience (Feb. 2008), found that chronic back pain patients demonstrated an always-active area in the frontal cortex associated with emotion, whereas healthy brains (in healthy non-pained patients) show those areas “go dark” from time to time. As columnist Jackie Gingrich Cushman notes in this article, meditation can help train the brain over time to “take a break,” as it were.

A Canadian physician found in one study that meditation of 10 to 20 minutes a day, over a period of ten weeks, significantly helped many patients to manage their pain. One participant, whose pain was so intense that she’d even considered suicide, noted she was “shocked” at how significant the impact on her pain was. (You can read more about the mindfulness method developed by Jon Kabat-Zinn which was used in the Canadian study here at NPR.)

In fact, Kabat-Zinn is somewhat of a pioneer in this area of study. His own studies served as the catalyst for many subsequent researchers. The abstract from one of those studies is here at his site, Wild Mind.

Another fibromyalgia study, this one conducted in Switzerland at the University of Basel Hospital, showed that a mindfulness meditation program yielded several key benefits in patients, including pain-induced suffering, anxiety, and depression. A follow-up three years showed continued benefits for those who stayed with the process.

Studies have also shown that a relaxed mind, one of the major benefits of meditation, is more capable of remembering and processing information, which might help alleviate that fibro fog and similar fuzzy states of mind we all hate so much.

The Mechanism Behind Mindfulness Meditation’s Impact on Chronic Pain

To get to the “whys” and “wherefores” we should review what happens in a normal pain response in a healthy individual:

  1. A painful stimulus is applied — be it a hand on a hot stove or an injury in a car wreck;
  2. The nervous system sends the “IM” as it were to command central: “Injury: Possible Pain Ahead”
  3. The brain then acts like a relay station of sorts. It sends out the message, much like a PA system, to what’s been called “the pain matrix” — an association of brain areas responsible for different functions that, collectively, help us process and learn from the experience (more on this below)
  4. Those areas jump into action, sending the signal to the rest of the body to either stop interacting with the painful stimulus (“take your hand off the stove, idiot!”) or prepare for biophysical stress (“this is gonna hurt”)
  5. The brain’s various structures then learn from the experience thanks to a characteristic known as neuroplasticity.

To get to the heart of how meditation works, we need to focus on steps 3 and 4 — the sending of the signal to the pain matrix, and the various commands that then issue from the brain to the rest of the body in response.

The Functions of the Pain Matrix

In step 3, the PA message goes out to the pain matrix, which consists of those areas of the brain with the following functions:

  • Turning the signal into a physical pain sensation — so you become aware of all this stuff (that’s happening at lightning speeds, of course — much too fast to discern separately)
  • Keeping track of goals and conflict — so you can start to solve the problem of how to make this unpleasant experience better
  • Processing emotions, thereby triggering fear and anger — so you become motivated to protect yourself

That last one, in particular, is important. It’s easy to look at this process and say “well, the emotional stuff, it should just go away. Who needs to feel such negative emotions all the time?” But in fact that’s a crucial part of the healthy pain response! Without it, you’d likely just keep doing the same thing over and over, because it wouldn’t have become something you desire to avoid .

Now, that’s a healthy response. But in chronic pain, the response gets all screwed up. Those hormones that flood our body in step 4, preparing us to “fight or flee”, don’t dissipate like they should. The emotional response continues longer than it would otherwise. In short, we get stuck in this cycle. Like the Energizer bunny — it all just keeps going and going and going …

What meditation does is akin to short-circuiting that cycle. It breaks the emotional response (which only serves to amp up our suffering). It calms the biochemical stress response. It allows us to experience the pain without suffering through it.

My personal experience with this phenomenon tells me that the benefits are not only immediate but also cumulative. That is, you get an initial improvement in your well-being, sure — but over time, those benefits add up.

Now, when I go into a flare now (and of course, it still happens) my meditation practice has now retrained my brain to approach the experience with equanimity:

  • I don’t get upset.
  • I don’t feel nauseated afterwards (which is due to the overflow of adrenaline that’s produced in the pain response).
  • I don’t feel that rage and debilitating fear that grips so many of us — and used to grip me tight, to be sure.

Want to Know More?

In a few days, I’ll share some solid tips and tools on how to implement a meditation practice, even if you’ve never meditated before.

If you want the full New Agey “whoo-whoo” experience, I’ll give you some suggestions to bliss out with the incense for the whole experience. If you’d rather keep it simple, I can help you there, too. No matter what your preferences, there is a meditation practice that’s right for you, and it will help you feel better. I promise.

Do you meditate? How has your experience with your chronic pain changed as a result of the meditation practice? Share your stories with us in the comments!

Photo Credit: kattebelletje via photopin cc

Six Secrets of the Empowered Chronic Pain Patient

Image of an empty blue wheelchair in a room

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?

What Does Health Care Reform Mean For Fibromyalgia & Other Chronic Pain Patients?

Image of a Stethoscope Against White Background

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.

Woman in White Meditating Outside

Does Meditation Work to Relieve Chronic Pain?

In this series of posts we’re going to examine meditation in detail — what it is, how it helps, why it works, and how to do it.

Woman in White Meditating Outside

No, It’s Not “All in Your Head” … But Quieting Your Mind Can Help

For a lot of us, any suggestion of remedy that even sniffs of “it’s all in your head” is automatically suspect. For some of us, meditation falls into that category.

Look, I’m as anti-head-caser as anyone (being a fibromite, it comes with the territory) but I’m here to tell you: this meditation stuff works.

Let me make this point clear, though: I’m no guru. I hate the word and think it’s overused both as an honorific and as a criticism. What I am is someone who’s tried a lot of coping mechanisms and treatment options – someone with a pretty clear understanding of which of those options worked for me and which didn’t.

I’ve also done a fair bit of (OK, extensive) study on the subject, and while there’s absolutely no treatment for chronic pain that will work across the board — even for a particular illness — it seems that more and more evidence is piling up that meditation works. Specifically, it helps someone in pain cope with the pain by removing the suffering component. For me, it also goes beyond that and actually helps reduce the pain.

The Difference Between Pain and Suffering

First, we need to establish what we mean when we say “pain” and “suffering.” Interestingly tidbit: I used to be a lawyer, as most readers know. In preparing a complaint (the document that starts a lawsuit) for personal injury, lawyers will frequently use the phrase “pain and suffering.” Some of us in first-year torts class in law school wondered why use both? We chalked it up to typical lawyer-speak.

Fact is, though, they aren’t the same thing at all. The lawyers were right!

Pain is the unpleasant sensory perception we’re all too familiar with. It’s the biochemical response to certain stimuli — or, in our cases, the mere state of being alive with a chronic pain condition.

Suffering , however, is something very different. While pain is a physical phenomenon, suffering is entirely emotional and mental. It does, in fact, lie completely in your mind. Suffering, put simply, is the emotional resistance to the pain that we throw up, consciously or subconsciously, and it’s usually based on fear or anger, or both.

Suffering is what makes us think:

  • Why me?!
  • This will NEVER go away.
  • I’ll feel like this until the day I die.
  • What the hell is WRONG with me?!
  • OhGodohGodohGodohGod…

You get the drift.

There’s one more key difference: pain is a fact of life for the chronically pained. Suffering, however, is completely optional.

The Impact of Meditation on Suffering

Meditation works to relieve the suffering component of the chronic pain experience in several ways.

  1. It quiets the mind.
  2. It brings you out of the future-based fear you’re experiencing and grounds you back in the present.
  3. It reduces the physical stress caused by the experience of pain.
  4. It steadies and slows your breathing, which further reduces physical stress.
  5. It fosters a stronger sense of well-being.
  6. It moves you gently out of the “freak-out” mode into a more objective perspective.
  7. It improves your mood.

Why There’s No Contradiction Between Meditation’s Effectiveness and the Biological Reality of Chronic Pain

So, this is the part of the post where I tell you why those jerks who insist that it’s all in your mind are still bone-crushingly wrong and meditation works, anyway, and these two things are not the contradiction that they might appear to be initially.

Let’s say it again, just to make it clear: it is not all in your head . But meditation can help you reduce the suffering that accompanies your pain. And that can make it all just a little bit easier to bear.

This is true because — again — there’s a difference between pain and suffering. Pain is the biological response; suffering is the entirely emotional/mental response that accompanies the pain.

In future posts, we’ll look at how to start a meditating practice for chronic pain relief.

Seven Ways to Improve Your Communications About Chronic Pain To Your Doctors

Talking To Your Doctor About Chronic Pain Is Hard

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?


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.