Author Archives: Annie

Dependence Is Not Addiction

It’s no secret I’m a fan of tramadol. Hell, it’s the name of my site. Those little white pills saved my life. So it should be no surprise that I’m all for prescription pain medication when it’s used appropriately.

And it should be no surprise that one of my pet peeves is the fear-mongering that runs rampant and unchecked in the medical community that stops professionals from prescribing pain meds to treat chronic pain assertively.

What’s behind this insane aversion to the pills? I think there are a couple of things at work here. One is that somehow, we’ve abdicated responsibility for medical decisions to law enforcement officials. That’s messed up.

Another is this ineffective, wasteful “war on drugs” with its screwball insistence on locking up as criminals those who merely use, alongside the devils that push the crappy stuff on them. It’s swept up legitimate uses of pain medication along with the highly-publicized legitimate cases of prescription pain med addiction and the street-drug abusers.

And finally, I think there’s a fundamental misunderstanding that fuels this mess: too many folks are confusing dependence and addiction. Need proof? Here’s a page on drug dependence from the University of Maryland Medical Center — and look at the very first sentence:

Definition of Drug dependence:

Drug addiction, or dependence, is the compulsive use of a substance, despite its negative or dangerous effects.

Right there, in the very first sentence. A medical university gets it wrong. Now, true, in the next few paragraphs, it hedges the bet a bit:

However, a physical dependence on a substance (needing the drug to function) is not always part of the definition of addiction. Some drugs (for example, certain blood pressure medications) do not cause addiction but they can cause physical dependence. Other drugs cause addiction without leading to physical dependence. Cocaine is an example.

But it’s too late. The damage has been done. The first sentence makes it clear — “drug dependence = drug addiction.” The subsequent qualifications are too little, too late.

What’s the Difference Between Dependence and Addiction?

So what exactly is the difference between being dependent on a drug and being addicted to it?

Dependence is a normal physical condition, while addiction is an abnormal psychological condition.
Dependence simply means your body has grown “used” to the drug; addiction means you psychologically crave it, usually in higher and higher doses.
Dependence does not in and of itself interfere with your daily functions and life; addiction devastates.

We, as the fibromyalgia and chronic pain community, simply must do a better job of educating the world about this distinction. We need to speak out when our friends get it wrong. We need to write to editors of newspapers whose journalists get it wrong. We need to — yes! — correct our own doctors if need be.

The reluctance to speak up is completely understandable. None of us wants to be labelled an addict or drug-seeking (the medical profession’s cute little label for anyone whose pain they don’t quite understand — basically, a less emotionally charged way of calling someone an addict).

There’s so much stigma in this society against pain medication that when we speak up for any aspect of it as a treatment option, we’re automatically aware that somewhere, in some file, there’s a giant red asterisk being placed beside our names.

But we have to get over that if things are to change. The actual risk of addiction has been proven to be quite low, and when no conservative measures are working, why on earth should we be required to hurt like hell — often becoming nonfunctioning and disabled in the process, thereby putting an unnecessary drain on government resources — when we don’t have to be?

I do believe that lifestyle changes can hold chronic pain at bay in many instances — but not all. Why should we be forced to hurt like hell while we make those changes? All because some people don’t understand that dependence does not mean addiction.

I realize others may disagree with me strongly. If you’ve ever had a family member addicted to any substance, as I have, you may well be experiencing a strong emotional reaction to what I’m writing here. That’s fine.

Please understand: I’m not saying addiction to legal prescription pain medication does not exist. I’m saying it’s not a foregone conclusion, and it’s not a sufficient reason for chronic pain patients being forced to rely on ineffective conservative treatments, when there are legitimate medications that make them feel better and give them their lives back — which is exactly what tramadol did for me.

How Meditation Relieves Chronic Pain

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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?

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:

A painful stimulus is applied — be it a hand on a hot stove or an injury in a car wreck;
The nervous system sends the “IM” as it were to command central: “Injury: Possible Pain Ahead”
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)
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”)
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

Meet Sue Ingebretson in the NFA’s “Science of Fibromyalgia” PSA

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Check out this short (1 minute or so) public service announcement on the science behind fibromyalgia from the National Fibromyalgia Association, starring my new fibro-buddy, Sue Ingebretson!

Happily, I can report that Sue will be a featured guest here at the Diaries within the next week or so (depending on how long it takes us to actually set up the interview and me to transcribe that sucker, ’cause I just know I’m going to want to keep Sue on the line for a long, long time…).

We’ll be talking about the fibromyalgia journey, chronic pain recovery, and Sue’s fabulous new book, FibroWHYalgia which is now available at Amazon and other bookstores (affiliate link). (Also, her next movie role and who she’ll be taking to the Oscars … )

Six Secrets of the Empowered Chronic Pain Patient

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:

Keeping it consistently over a period of time; and
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?

Pregnant Pauses, Pain, and Penguins (Another Tramadol Diaries Excerpt)

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What is this?

Every so often, interspersed with the “how to” tips and advice on handling chronic pain and the posts where I shamelessly try to feed my kid via affiliate marketing (and for the love of God, please, people, go buy something, will ya? She’s already growing out of the three pairs of school pants I could afford back in January), I’ll share an excerpt from my work-in-progress tentatively and humorously (I hope) titled The Tramadol Diaries .

Unless specifically stated otherwise, I advocate trying NOTHING in these posts as a means of dealing with your own chronic pain (especially without talking to your doctor first). Except the humor. That works. Also? Self-delusion and self-imposed exile to Egypt — you know, the Land of Denial … well, at least it works for awhile …

“Does It Hurt This Bad For All Preggos?”

For nine solid months, and beyond, I hurt. Friends would ask, concern in their voices and eyes, “What exactly does it feel like?”

The first time I was asked this fairly simple question, I was floored. How to describe this hellish sensation that made walking, sitting, lying down, doing anything pure torture?

I thought for a minute, and then said, “Imagine it’s late spring and you’re in college. You’re wearing shorts. Short shorts, you know, the kind that barely cover the subject. Now imagine you’re sitting on top of a brick wall. OK? Now, say this really cute guy clear across the quad sees you. His eyes light up and he calls out to you, waving you over. You happily hop off the wall … and in the process, scrape the shit out of the backs of your legs. Got that?”

They’d wince, and then their eyes would go wide, and they’d nod. But I wasn’t finished.

“OK, now, while you’re in shock from that experience, the insane torture killer who just escaped from the local nuthouse comes careening around the corner and sees you in pain. You look just like his abusive mom, so he takes the fireplace poker he carries with him for just such a purpose out of his duffel bag with one hand, pulls out the flame thrower with the other, heats up the poker until it glows red and white at the tip, and then jabs that poker smack dab in the center of your butt cheek, then pulls it straight down your leg to your heel.”

At this point in the description, I’d get some strange looks.

So I’d shrug. “It’s like that.”

Colorful though the description may have been, it wasn’t overstatement or hyperbole. That’s exactly what it felt like. Most of the time, I’d be the girl who merely scraped the crap out of her legs on the brick wall. But at least once a day, I’d become the serial killer’s victim.

The worst part was I couldn’t predict when that transformation would take place. I tried, God knows. I kept logs — detailed logs of all my activities, my food and drink intake, my stress levels, my sleep — anything I could think of that might possibly be related to this awful pain. There were absolutely no commonalities. No pattern I could discern.

I was simply at the whims of some sadistic supernatural force that had decreed I’d be spending what should have been the most blissful time of my life — my first pregnancy — in screamingly debilitating pain.

And to make it even more deliciously sadistic? I was pregnant s o I couldn’t take any good drugs. Nor could I even take any diagnostic tests to figure out what the hell was going on with me.

What I could do was research. So I researched myself blind. I read every book on pregnancy I could find, assuming the pain was somehow connected to my burgeoning blessed state. Made sense, right? They both struck at the same time.

And in fact, in one of those god-awful pregnancy tomes — you know, with the paintings of the long-haired earth mothers, rocking a baby with some intricately knitted shawl delicately draped around her shoulders? — what I found was that this devilish pain had a name — sciatica — and it was in fact commonly experienced in pregnancy. Bingo, I thought smugly.

Then I read the next paragraph, and my smugness vanished, to be replaced by utter confusion and dismay: sciatica was commonly experienced in pregnancy — in the last weeks of the third trimester, as it was related to the pressure of all that extra weight pressing against your spine. But I’d been feeling like this since right after the little blue line popped up on the white stick.

Well. Damn.

So I know what it is, but not why I have it, I thought. Crap.

In a master stroke of irony, I experienced absolutely no other negative pregnancy side effects. No fatigue. No morning sickness. Well, I was hot as hell, perpetually. I cranked down the house thermostat to the point that my husband swore he saw penguins leaving in the middle of the night, shivering, muttering “Damn, it’s too cold in there.”

“Ha. Ha. I’m growing a person in here,” I snapped back. “It’s hot work.”

The worst time was nighttime. I’d lie there on one side then the other, a long body pillow stuffed between my knees and clutched over my bursting belly, desperate for one moment of … not feeling good since that was clearly impossible, but at least of sufficiently reduced pain that I could finally reach that blissfully unaware state of sleep.

Predictably, as I grew bigger the pain got worse. But sometime around the sixth month, I discovered that I had superpowers.

Specifically, I had the power of auto-suggestion. I could convince myself of anything, it seemed. Even that my pain was fading. Even that it was gone. All I had to do was lie there, quietly, and repeat to myself over and over “I feel good, I feel great, my legs feel great, I can sleep, I feel good, I feel great …” Within five minutes, the pain subsided long enough to let me drift off.

Excited at this epiphany, I started playing this game during the day. I was devastated to find out it only lasted a few minutes at a time, and required serious mental effort — more effort than I could give, since I was still working. So I suffered through the days.

But at night? I was Pregnant Sleeping Cleopatra, Queen of Denial.

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

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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.

Does Meditation Work to Relieve Chronic Pain?

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.

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

Fibromyalgia “Cures”: The (Ir)Responsibility of Weird Science

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The Problem: Wild and Unsupportable Claims About Cures for the Incurable Diseases That Cause Us Pain

Following on my recent post here about a Twitter debate I enjoyed with Deb Drake concerning the various approaches to fibromyalgia treatment, I wanted to write about another aspect of Twitter that’s not so much fun: people making wild, unsupported, unsupportable claims about fibromyalgia (and other diseases) through their tweets.

A few examples:

Oh, heck. Just take a look at a real-time search on Twitter for “fibromyalgia cure.”

Why I’m Skeptical of These Claims/Claimants — And You Should Be, Too

Knowing who and what information to trust on the web, whether that’s on Twitter or any other site, is difficult sometimes, I realize.

Frankly, I could adopt the whole “only trust .edu and .gov sites!” line that a lot of internet nannies advocate, but I think that’s kind of dumb. For one thing, the most passionate people involved in illness advocacy, treatment and help are the patients — not the government scientists and university professors with access to those prized domains.

For another, it’s just naive to expect people to rely completely on universities and the government for health information. Both entities are constrained by internal and external rules and fears of liability that can restrict the information they’re allowed to disseminate. Not so with individuals or private groups.

On the other hand, though …

You’ll see a lot of usernames with words like “money,” “affiliate,” and “tweet” in them, and a lot of shortened links leading to posts that claim cures for fibromyalgia are readily available — usually conspiratorially squelched by the Evil Government or Big Pharma, two handy scapegoats which “don’t want” you to have this “valuable” information for their own malevolent or merely greedy reasons.

You’ll also see a lot of folks like Roger up there, who seem sincere (but who also have a vested financial interest in getting you to act on their “advice”). And that advice generally consists of wild claims about diet and supplements, about the evils of “chemicals.”

Does a vested financial interest alone — the mere fact that someone’s using Twitter to make money – render the advice untrustworthy? No, of course not. Anyone who claims otherwise is simply too naive to have a rational conversation with. Rather, it’s just one factor in a group of issues to be considered when you’re deciding whether to trust a piece of information — whether that’s from Twitter or any other part of the web, really.

But here’s my thing: if a website I’m directed to is solely about health, generally — not a particular disease or condition or demographic — and if that website is strictly for affiliate marketing, and if the profile of that blogger tends to suggest his or her purpose is in making money, not helping people with chronic illnesses — then, yeah. I’m thinking this person is someone who signed up for Clickbank or LinkShare, who doesn’t actually have the condition at issue but rather simply wants to make money.

Anything wrong with that? Not at all. Heck, I signed up, too. I can’t work the way I’d prefer to, so this is the way I make money and support myself, in addition to the writing and consulting I do.

Am I going to trust that this person “has a cure” for what ails me – or, for that matter, for what ails anyone else? Not a chance in hell. And if you ever see me making claims like that, then you shouldn’t trust ME, either.

Chemicals Aren’t Evil, Per Se

I always find this “chemicals are to blame!” argument a little unintentionally hilarious. Almost always, it’s made in a slightly hysterical tone. Really, what do these folks think the human body is made of?

I think they mean “bad chemicals” — which of course raises the inevitable questions:

How bad?
In what way bad?
Bad by whose definition?
And, most importantly, where’s your proof?

The Detox Myth

So, of course, They urge us to “detox.” Short for “detoxify” — as if all these “bad chemicals” have so laden our bodies, lining the walls of our very cells, and causing all our problems, and all we have to do is give the body a thorough scrubbing in order to rid ourselves of the toxins.

Heck, no less an “authority” than Gwyneth Paltrow exhorts us to “get Clean” by “detoxing” from the assorted chemicals foisted off on an unsuspecting, naive, ignorant public by … well, by somebody (corporations, I’m guessing? Republicans? I don’t know).

The problem with this, of course, is that it’s (mostly) complete bullshit. There is no evidence whatsoever that any kind of “detox” program, regimen, diet, or process will lead to better health. And there is quite a bit of evidence that some of these programs actually cause harm.

Are there legitimate occasions for detox? Sure. Heavy metal poisoning calls for chelation. But unless you’ve been exposed directly to mercury …

I mean, c’mon, people. Let’s use a little common sense and deductive reasoning here, OK?

Why Claims Like These Hurt Us All

At the heart of my admittedly deeply emotional (and that emotion would be anger ) reaction to these quacks and their unsupported claims lies the false hope and inevitable frustration and self-recrimination they generate. First, we get hopeful – hey, something new we haven’t tried yet! It appeals to our innate love of purity and nature, and we think how wonderful it would be if we could just “get clean.”

When it doesn’t work as suggested (and yes, sometimes promised — which is highly unlawful), we’re left with anger, frustration and guilt. Maybe we didn’t do it right. Maybe we’re just so awful — so compromised, so toxic — that it couldn’t possibly work.

Anger, though? That’s a rational reaction to a failed experiment with one of these so-called cures — as long as that anger is directed at the jerk who sold you a bill of goods in the first place.

The other reason all this “cure”-selling makes me angry is that trivializes the illness. Don’t you think that if fibro could be cured with some over the counter pills and herbs that there would be an army of media outlets trumpeting the good news? Don’t you think I’d be right there with them?

Whatever complex mechanism or mechanisms are at work behind fibromyalgia, I highly doubt a handful of powders and spices are going to cure it. Until I see some double-blind studies published in peer-reviewed journals, I’ll pass, thanks.

That’s Me … What About You?

Now, that’s my stand on it.

But if you want to try one of these programs (which They just happen to sell for the low, low price of $197 or whatever for a measly month’s supply), be my guest and I won’t mock you. Promise. I know what it’s like to be so desperate for relief that you’ll try anything — even if it doesn’t make a lick of sense.

Just go into it with eyes open, and for the love of all that’s good in this world, don’t go for one of the regimens that promise to get rid of “parasites” unless you get it from your doctor after a valid diagnosis.

FMAware, the NFA Magazine for Fibromyalgia Patients, Is Now Available Online – FREE

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I know, I know.

I SUCK. I haven’t blogged here in … what, millenia? Seems like it. I swear I’m getting back into it, slowly but surely. There’s been … stuff. Going on. And now it’s starting to come to an end. But I’ve abandoned y’all in the meantime, so – yes, I know. I reiterate: I SUCK.

You know what doesn’t suck? The National Fibromyalgia Association (NFA). Know why? ‘Cause they made their rockin’ mag for fibromites, Fibromyalgia Aware , available online. For FREE.

Yep, you read that correctly. How cool is that?

What Is the NFA?

The National Fibromyalgia Association or NFA is a nonprofit group dedicated to helping people with fibromyalgia raise their quality of life through lifestyle changes, medical treatment, and other mechanisms. As a secondary purpose, they’re also into raising awareness of fibromyalgia nationally in the political, social, and media arenas.

FM Aware: A Great Resource for Fibromyalgia Patients

To kickstart that mission, they’ve developed this magazine, FM Aware, that costs about thirty-five bucks per year for a subscription. The magazine, published quarterly, covers all kinds of topics relevant to the fibro community, such as:

Recent research and developments in understanding the causes and new treatments for fibro;
Improving quality of life and well-being in fibro patients;
Understanding and researching all available treatment options in an objective manner;
Managing symptoms and pain through health care and lifestyle changes;
And more

So, in order to increase readership and help foster a greater sense of community among fibro patients online, NFA has made the magazine freely available to everyone.

April Blounts, a fibromite for ten years (hey, like me! 2000 was a very … interesting year) is a volunteer with NFA and kindly alerted me to this great news. April stated in her email:

I am excited about the magazine going online for free, because the print version retails for $9.95 an issue. The cost of the magazine helps the NFA continue its mission, but I think that putting it online for free allows so many more people to read it and feel connected to the fibromyalgia community.

It’s great news, indeed, and I’m very grateful to April and the NFA for letting me know about this awesome move.

So, everyone, go read FM Aware! And while you’re at it, take a moment to drop a line to the kind folks at NFA and let them know how much we appreciate them making this amazing resource available to us all.

Chronic Pain and the Other People in Your Life

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I’m working feverishly on several projects, including three for this site alone, and those WILL be coming (by God) but in the interim, I wanted to share a few thoughts that were sparked by a conversation I had today with a writer who was interviewing me about chronic pain and two topics near and dear to my heart (and … well, other body parts): parenting and sex.

Warning: This is going to be frank. If you’re easily offended by such stuff, please exercise your mouse on over to the “back” button or the little “X” up there in the corner of your browser and clickity-click. ‘Kay? Moving on.

The interview was shortish – about half an hour or so – but we briefly touched on both topics: how chronic pain affects (A) our parenting relationships with our kids and (B) our sex lives. The chronically pained (like that? I just made it up because this whole language problem with writing about chronic pain just sucks) think and write and talk a lot about how pain affects us — but it also affects others too, and the interviewer’s questions got me thinking: both of these seemingly disparate topics are really about one thing: how chronic pain screws with our relationships with other people, and ourselves.

Chronic Pain Affects How We Interact With Others

The first thing that occurred to me was a relatively simplistic notion: chronic pain has a significant impact on how we relate to other people in our lives. It has to, because it changes our world. Anything that has that much power over our routines, our relationships to our bodies, our self-images, must also necessarily impact our relationships with others. As much as we might wish otherwise and say to ourselves, “It won’t — I won’t let it” — well, it’s wishful thinking.

So the first key, I think, is to simply acknowledge that it’s there, that it will change things, and that where our power lies is in how we react to that change. We’re not powerless, after all. As I spoke with the interviewer we began talking about the difference between pain and suffering — pain isn’t optional for us, but suffering to a large extent is optional. It arises when we resist the “what-is” in the moment, if I can get a little New Age on you for a second.

That resistance is what hurts us emotionally and what’s behind the perception of suffering. Yet many of us find that when we can simply be present with the pain — as in present, as in “not the past and not the future, not even two seconds from now” — we reduce our perception of suffering. And, of course, suffering is all about the perception. If you think you are, or you think you’re not, you’re right.

It’s Hard to Feel Sexy When You Hurt Like a Mother#*@&^%

For those of us who have had or are in romantic relationships while coping with chronic pain, our conditions have a whole other realm of impact and that’s on our sex lives.

“Ha! What sex life?” I hear some of you asking yourselves. Exactly my point.

Whether we want to admit it or not, sex is important in a relationship (well, usually). Unless you and your partner both are completely happy with how your pain has limited or changed your sex life together, then, my friend, you’ve got a problem or will soon have a problem.

Here, too, pain changes how we relate. Except that what we’re relating to differently now isn’t just another person — it’s also our own bodies as well as the relationship itself.

In my last relationship (my marriage, which ended a few years back), there were many problems — and only a few of them had anything to do with my pain. But even so, I admit that my condition(s) negatively impacted our relationship, and part of that was due to the fact that I just didn’t want to have sex.

Well, that’s not entirely true. I did. But I also … didn’t. You’ve heard the saying “the spirit is willing but the flesh is weak”? In my case, it was more like “the spirit and some parts of the flesh are on board with this but the rest of the flesh is saying ‘Oh HELL to the NO.””

It’s important to be precise.

I’ll leave the tips and advice for another post but I’ll simply say this now: sex is a crucible for the entire relationship. It’s your canary in the coal mine. If it’s off kilter, you’ve got problems elsewhere, too. (And probably vice versa.) What’s a symptom of which? Does it matter, really? You’ve got to talk about it – honestly, openly, and without prejudging what kind of response you’re going to get.

This is easier said than done, especially if your spouse has been less than supportive, I know. I have no easy answers for anyone. All I know is that the alternative — swallowing your issues and either simply refusing to play, or worse going along with whatever just to please the other party — will kill you. It will kill you literally or figuratively — in body or in psyche — but either way, it’s not living. Not really.

Parenting and Pain

One of those awesome projects I’m working on for this site is a series of posts about how to talk to your kids about chronic pain, so I don’t want to get too far into this topic right now. But I’m learning a lot from reading what the experts who are participating in this series have to say about the subject, and it’s also triggering some thinking of my own about my experiences as a single mom.

As I said to the interviewer this morning, I think kids need two things: information and reassurance. It might seem like you’re protecting your child by not being up front about your own illness with him or her, but please believe me on this point, if you believe nothing else: the little ones KNOW. They just sense things, much more than we ever suspect.

Talking to them in an age-appropriate way is the first and crucial step, I think, to being a more effective parent when you’re coping with chronic pain. And it’s not a conversation you can expect to have once and be done with it, by the way. Be prepared to go over this stuff a few times, at least. But again – more on that in the appropriate post.

For now, I just want to acknowledge for myself, publicly, that chronic pain has changed my approach to parenting. That I can’t be the parent I dreamed of being in exactly that way I envisioned anymore. But I can be even better, in some ways, by being honest with my daughter, by showing her my strength, and by trusting her enough to let her have her honest emotional and psychological response to the truth of my condition.

And maybe when we get right down to it, that’s the problem underlying all of these squirrelly issues: do we really trust the other person enough to let them respond honestly to our pain? Or are we so afraid and gunshy (for good reason, thanks to the responses we often get from those who are supposed to be providing for our medical needs) of confessing the truth about our pain that we can’t even be real with our own loved ones?