Welcome to Chronic Pain: Ten Tips For the Newly-Diagnosed

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

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

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

1: Understand Your Chronic Pain

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

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

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

2: Stay As Active As Possible

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

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

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

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

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

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

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

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

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

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

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

4: Keep A Wellness Log to Track Your Symptoms

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

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

At a minimum, you should track:

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

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

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

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

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

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

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

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

6: Monitor Your Sleep

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

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

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

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

7: Revise Your Expectations of Yourself

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

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

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

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

8: Clear Your Plate

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

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

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

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

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

9: Practice Radical Self-Care

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

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

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

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

10: Learn and Change Your Inner Monologue

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

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

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

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

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

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

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

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

Exercise and Fibromyalgia: A Love/Hate Affair

I Wish I Could Move Like That …

My reaction to reading Sirena Dufault’s story about hiking the Arizona Trail was, I suspect, like many fibro-folks out there, one of pure, unadulterated envy.

As I read on, though, I began to wonder: was her story really so different from mine? Or anyone else’s? Was her pain any different? Any less severe?

I was forced to conclude “probably not.” Which only makes me crazier, frankly. If she can do it, why not me?

Fibromyalgia and Exercise: Why I Resist What Could Make Me Better

I had this dream of hiking up Mount Kilimanjaro once. I gave it up when fibro hit. How do I reconcile that fact — that I had this dream, this cherished goal, but gave it up in the face of fibro — with my reluctance not to accept my limits? Either it wasn’t that cherished, this dream of mountain climbing. Or, I’m only insistent on refusing to accept some limits, but not all.

As I sit here today, on a hot Friday afternoon in coastal South Carolina, suffering from a flareup of both the fibro and sciatica from my degnerating disks’ impingement on the sciatic nerve, I know that I have to move my body. I know that if I do move my body — gently, to be sure, and in very controlled ways — that both of these flareups will ease somewhat.

Yet, here I sit, watching a movie on Showtime, typing up this post.

Why is it so hard to get moving? Because we don’t want to hurt more. Because we’re more comfortable wih the pain we know than the pain we don’t know — the pain we have, over the pain we haven’t yet acquired. Because it’s easier to be still than to move.

But it’s been pretty well established that a carefully designed and monitored (not to mention “slowly implemented”!) exercise program can be very effective in reducing chronic pain — including the pain of fibromyalgia.

So why are so many of us still sitting on the couch, afraid to move?  We know if we go too far, too fast, that we’ll end up in a flare. This is also a fairly well-established fact. This is a tightrope we have to walk, make no mistake — it’s high, and it’s really skinny. One misstep — one quarter-inch left or right — and we fall into much worse pain.

Nevertheless, we must walk it. So, how do we start to wrap our minds around this process, and begin to embrace exercise, instead of fear it?

First Things First: See Your Doctor

Make an appointment with your doctor right off the bat, before you begin any new exercise program.

Talk to her about what you want to do, and discuss with her what sorts of activities you can safely engage in. Find out what she recommends — what’s worked for her other patients with your condition — what you should stay away from for now.

Also, make certain that your blood pressure and current weight will support exercise. Get very clear with your physician on any special safeguards you should take.

Know Why You Haven’t Exercised Yet

First, get clear on why you haven’t exercised yet. Acknowledge every single fear, every single belief — and I daresay it’s not just the fibro that’s been keeping you on the sidelines.

It’s probably also the fear of being seen as ridiculous, or feeling ridiculous, or getting uncomfortably hot or sweaty, or feeling worse about ourselves and our bodies than we already do. Write them all down and own them, each and every single fear, thought, or belief.

Acknowledging our beliefs is the first step to changing them.

Define Your Vision

Next, think about your ideal — your vision of yourself in movement. Do you dream of hiking up a mountain? Walking the length of an 800-mile trail? Running a marathon? Swimming daily? Finishing a yoga class?

Whatever your vision of yourself-in-movement is, write down a description of that vision as if it were already true. A few cautionary guidelines:

  • Be realistic. You’re not going to be prima ballerina of the New York City Ballet, I’m afraid.
  • But make it exciting. Too small a goal won’t energize you and get you motivated.
  • Pick what truly lights your fire. If it doesn’t ignite your passion now, you’ll have a much harder time of it when things get tough — and they will.

Write down your vision as if it’s already your reality, in the present tense with as many sensory details as possible — what does it feel like, doing whatever movement you’ve chosen? Are you racing on a horse’s back with the wind whipping your hair? Are you slicing easily through the pool’s water like a mermaid?

The goal here is to conjure up as vivid a picture of you in action as you possibly can, so that your body actually gets tricked a little into thinking it’s already real. Your body and mind doesn’t know any better, you know. Convince them it’s real, and you’re well on your way.

Determine Your New Beliefs

Think of the person — you — with fibro (or whatever your chronic pain condition might be) — moving, with that vision in mind. What does that person have to believe, in order to do what she does?

Using your list of fears and current beliefs as a template or guide, begin listing out the beliefs that enable that vision to become reality.

If you believe now that it’s not worth it to risk a new flareup, then how about believing “careful exercise makes me feel better and nothing is more important than feeling better”?

If you believe “It’ll make me feel like a failure” then how about “Exercising and taking care of myself makes me feel wonderful, like a goddess”?

Just write them down for now. Don’t worry about whether you can adopt those beliefs, how “wrong” they feel to you as you write them down, or whether they’re “accurate” — just list them down. Create the full picture of how it all looks on paper, in black and white, to be this person who moves the way you want to.

Open Your Heart and Mind to Your Vision

This is probably the hardest part of this process: contemplating the possibility of letting go your current beliefs in favor of the new ones.

For some, this might smack of “it’s all in your head.” Please understand: that’s not what I’m saying. At all. (Hopefully, y’all know that about me by now!)

Rather, it’s about changing the beliefs that are holding you back from doing something that’s scary and risky, but very effective at relieving your pain.  It’s about your motivation to engage in this particular kind of treatment, not the pain itself.

But to get there, you first have to be able to envision letting those old beliefs go completely. And for many of us, that’s a scary proposition in itself. If you’re having difficulty with that concept, then try telling yourself this: “I can always pick up my old beliefs if the new ones don’t work.”

However, if you want to see a different result, you’re going to have to do things differently. If you’re going to do things differently, you’re going to have to believe different things. And to do that, you first need to open up to the possibility itself.

Changing Your Beliefs

It sounds strange, perhaps, at first. But it can be done. We change our thoughts all the time, and beliefs are nothing more than entrenched thoughts.

This is not to say that the process of changing beliefs is an easy one. It’s not. It takes a lot of time, and a lot of concentrated attention. For the first several days, if not weeks, you’ll need to keep these new beliefs firmly in mind.

You don’t need to change your behavior during this time, if it feels like “too much” — just work on the beliefs. Eventually, those new beliefs will take hold and that will help propel you into action.

Try these suggestions for helping your new beliefs to take root and displace the old, unhelpful ones:

  1. At least a few times a day, take five minutes or so to visualize your ideal vision. Try to make it as sensory an experience as possible. Feel it fully.
  2. Set aside a regular time in the morning and at night before bed to reread your list of new beliefs. Read slowly, deliberately — say them out loud, even.
  3. Consider the new beliefs in terms of your daily activities. Is there some action in particular you can take now, or change the way you perform an action, to reinforce those beliefs?  If one of your new beliefs is “I am an active person,” can you find moments in your day to incorporate more activity? For instance, some light stretches in the morning when you get up, doing calf raises when you’re washing dishes, taking frequent breaks throughout the day to walk around or do pushups against the wall … even creating a new fidgeting habit … all these things can reinforce that new belief. You believe you’re an active person because you are an active person. See how nicely that works?

Get Up! But Do It Slowly, and Talk to Your Doctor First

In sum: getting active and doing some careful exercise on a daily basis will go a long way towards managing your pain. But you have to go about it the right way. The very first thing you need to do: see your doctor, and verify with her what kinds of activity you can safely do. Then, work on acknowledging your current limiting beliefs and changing them, perhaps reinforcing them by implementing new actions slowly, over time.

Sirena Dufault: A Walking Inspiration for Fibromyalgia and Other Chronic Pain Patients

Sirena Dufault on the Arizona Trail to promote fibromyalgia awareness

Sirena Dufault on the Arizona Trail to promote fibromyalgia awareness

It’s amazing in itself, even without the backstory: Sirena Dufault, a 35-year-old woman from Tucson, Arizona, is hiking an 800-mile path called the Arizona Trail, start to finish.

What’s inspiring about it for me and thousands of others like me: Sirena has fibromyalgia.

For ten years now, Sirena has been living a life that’s familiar to all of us who’ve received that diagnosis — a life of pain, of medication, of seeking any and all treatments promising relief, of compromises and limitations.

Yet Sirena has undertaken something precious few of us could even begin to consider in our own lives: a massive, difficult physical challenge. And she’s doing it to raise awareness of what we’re forced to live with on a daily basis.

You can follow Sirena’s trip, which she plans to finish up on May 12, National Fibromyalgia Awareness Day, here at her blog. You can also read this article about Sirena’s hike for fibro at the Tucson Citizen (free registration required).

I have more to share on Sirena’s inspirational example in tomorrow’s post. Make sure to come back around noon on Friday, May 8th, to read more about movement, FMS, and courage.

Big Dreams, Small Mercies: How to Set Goals When You’re Living With Chronic Pain Conditions

Whether it’s the desire to lose 20 pounds for your high school reunion, or the determination to find a job that ignites your passion, goals don’t cease to be a part of your life when you’re diagnosed with a chronic pain condition. Often, our broader lifestyle-related goals are at first put on hold while we research the new universe we find ourselves in, and are supplanted while we seek the treatments that work, the accomodations that let us do our jobs, or continue to earn a living after being forced out of a job that no longer fits, and the means to that most cherished goal for the chronically-pained: a good night’s sleep.

Don’t Be Afraid of Big Dreams

It might seem impossible, while you’re consumed with achieving some minimal measure of quality of life, to even contemplate setting big goals, much less setting out to achieve them. But every big goal must begin with a big dream. When we give up on big-dreaming itself, it’s a signal to our subconscious minds that we’ve accepted the severest of limits for our lives.

Allowing our imaginations to run freely, we send a very different signal to ourselves — that we’re not in this just to “get out alive” (because, after all, no one does in the end), but to feel joy, to enjoy life to its fullest — in short, to thrive.

Credit Where Credit’s Due: Acknowledging Small Victories With Chronic Pain

At the same time, we don’t really give ourselves sufficient credit for the small goals we’ve already met along the way. Something as small as figuring out a better yoga posture adjustment that takes into account our particular symptoms, or even getting up and taking a shower on some days, should be acknowledged as a goal set and met.

One way to get a better perspective on your little victories is to take a few moments at the end of each day and jot down in a journal three or four things you did that day of which you can be proud. Review past entries on occasion, especially when you’re feeling a little less than effective on bad days.

Making Goals SMART

If you want to try setting some goals, while taking into consideration your chronic pain, then be SMART about it!

  • S = Specific: Make sure your goals are specific, not general and vague. “Lose 10 pounds” is specific; “lose weight” is not.
  • M = Measurable: How will you know when you get “there”? Measurable goals suggest their own tracking methods. Again, “lose 10 pounds” is measurable — simply get on the scale. “Feel better” — not only vague, but how exactly would you measure “better”?
  • A = Action-Oriented: Choose goals that require some action on your part, not goals that are wholly outside your control.
  • R = Realistic: Finding a cure for fibromyalgia is specific, measurable and definitely action-oriented, but is it realistic for you at this time in your life? I’m not advocating “dumbing down” your goals, at all. But don’t set yourself up for failure right at the start.
  • T = Time-limited: Select a reasonable time period in which to make progress or achieve your goal. Deadlines give us a little beneficent pressure which can keep us highly motivated to stay on track.

Should you select one goal to begin with? Many coaches advocate this as a way to maximize your chances of success. My advice: it depends on the nature of your goal. Some goals, including many physical goals such as losing weight, or starting an exercise program, can be achieved at the same time as other, more complex goals. Use your common sense and self-awareness. If you don’t think you’ll be able to stay on track with more than one goal at a time, then just choose the most important.  Otherwise, feel free to explore a few at a time, as long as they are personally meaningful.

Fibromyalgia and Dr. Unbeliever: A Horror Story From Texas

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

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

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

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

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

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

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

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

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

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

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

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

But you do, and you must.

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

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

We are at war.

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

Honor Your Limits? Or Refuse to Accept Them? Some Thoughts on Chronic Pain and Personal Beliefs

When I was first diagnosed with fibromyalgia, my reaction was surprising, even to myself. I felt this overwhelming sense of relief, pure and giddy relief. Far from being devastated by the incurable nature of the illness, or the lack of any dependable treatment (this was 10 years ago), I was so overcome with gratitude to finally, at long last, have a name for what I’d been feeling for so many months.

Since then, I’ve discovered this isn’t an uncommon initial reaction. Lots of us have been battling for so long with the naysayers, the ‘it’s all in your head’-ers, the ‘you’re just tired’-ers — not to mention the utter lack of information — that by the time we finally achieve that diagnosis and have a word to put to the horrid aches and myriad other symptoms we’ve been dealing with, we truly are relieved.

But after diagnosis, my emotional reactions to this illness’s ups and downs have been all over the map. Flares don’t always make me feel hopeless, and remissions aren’t always accompanied by contentment and joy. One emotion — or perhaps it’s better termed a belief — has been constant, though: my refusal to call myself “sick” and live squarely in the confines of my limitations.

Until now.

I’ve always been a fairly optimistic person, and when I first started dealing with fibro as a life-constant, I brought that same attitude to my treatment and daily coping techniques.  I can’t say for sure that it made my experience of the pain and other symptoms any different. But somehow, I admit, it felt a bit … virtuous.  As if I was “rising above” the illness.

Lately, however, the illness has risen above me. Risen above, and done a body slam on my ass, keeping me pinned to the mat. Or the bed. Or the couch. Or wherever I end up collapsing at ever-earlier hours of the ay.

A few years into my search for conservative treatments (read: anything other than prescription drugs) I read about something called “Phoenix Rising Yoga Therapy.” I’d been into yoga for a few years at this point, so this appealed to me. The idea, basically, was that a therapist/yoga instructor would work with you one-on-one, while you did yoga asanas (poses), adjusting your body and giving you light massage.

I called and made an appointment, and during our first conversation on the phone, the therapist was explaining her approach. “It’s important that we not go too far too fast, so we have to take this slowly,” she said. This rang all kinds of alarm bells for me. I blurted out, “Yeah, but my goal is to get better. I refuse to accept these limits.”

There was silence on the line.

“Hmm. I’m sure you agree it’s not smart to push yourself.”

I mumbled something like “Yeah, sure.” But the next day I canceled the appointment.  I can’t explain the reaction I had to the woman’s statement. It offended me, as if she were trying to put me in a cell, or something. I know, obviously, that she was just expressing the philosophy of yoga, where it’s not about pushing the envelope but playing at the edge, and not about competition ever, even with yourself.

What I was saying was that I wanted to beat fibro — not just transcend it, but beat it, maybe literally, into the ground.

What she was saying was “this is your reality, and you can transcend it but you can’t beat it.”

And I wasn’t ready to hear it.

It got me wondering today, now that I’m several months into this … this whatever the heck this is — monster flareup? relapse from hell? — I wondered how others felt about it. So I asked the fibro-fab ladies (and one fibro-fab dude)  on Twitter: “Do you honor your limits, or refuse to accept them?”

And here are some of the responses I got, all of which resonate with me deeply:

I tell everyone I know with pain to “listen to your body”, then I go & overextend my limits every time! I’m my own worst enemy.

I used to refuse to accept my limits until I wore myself down to a point where I was bedridden & completely dependent on some1. now I have learned 15 yrs later what my limits are & try to keep within them. Sometimes I push it but for the most part I dont.

I have to honor my limits. If I don’t, I wind up…well, kinda like I’ve been the past few days, totally flaring miserable!

[S]omething in between. I decide just what is worth it and what isn’t. I am not a hero.

More of the keep doing stuff until I fall over the cliff of my limits kinda guy myself. I know there there, but….aaaaaaaahhhh

What about the rest of you? Do you honor your limits or deny and push past them? What effect does it have on your experience of your symptoms?

I don’t know that I have any answers, by the way. I’m still struggling to make sense of this myself. For nine years, I adapted and adjusted and was functional. Then, last year, the rug got pulled out from under me, and I’m still trying to find my footing.

UPDATE: Almost as soon as I posted this, an email from Yoga Journal arrived in my inbox with these almost scarily prescient comments:

Are You Working Too Hard?

As hatha yogis, we work earnestly to find peace through the mind-body connection. The fruits of our practice are a direct result of the quality of our time on the mat, rather than the quantity.

If we allow our ego to lead our practice, we run the risk of overefforting and creating agitation in the mind and injury in the body. If we practice with humble curiosity and compassion for ourselves, then our bodies, breathing, and minds are more likely to become calm and peaceful.

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?

UPDATE

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

Updating The Tramadol Diaries Resources List

If you haven’t checked out the list of web resources for chronic pain survivors here on The Tramadol Diaries, I’d like to encourage you to do so now. Take a look, and tell me what I’ve left off. I know there are tons of sites out there, but I need your help identifying the best, most reliable, and current blogs and websites that pertain to chronic pain, or to any individual chronic pain condition.

Today, I updated the list with a few medical information sites pertaining to fibromyalgia and ME/CFS. I’m especially interested in hearing from patients of other illnesses who can tell me what sites have helped them in particular.  So, take a look at the resources list, then drop me a line through the contact form on this site and tell me: what did I miss?

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Savella, Third FDA-Approved Fibro Drug, To Be Released Earlier Than Planned

Fibromites will have a third FDA-approved choice next week, earlier than anticipated. Savella(tm), the new drug, is produced and licensed by Forest Laboratories, Inc., and Cypress Bioscience, Inc. Originally scheduled for release in March, following a January 2009 approval decision, the manufacturers went back to the drawing board for what was described as a minor cosmetic change (i.e., they didn’t like the way the pill looked). That change also had to receive FDA approval, and release was anticipated sometime in the middle of the year.

But the approval came more quickly than expected, and shipment of Savella is scheduled to begin this Friday, with availability in pharmacies as early as next Monday, April 28, 2009.

About Savella

Savella is the tradename for milnacipran HCl. It’s classified as a selective serotonin and norepinephrine dual reuptake inhibitor; both neurotransmitters are believed to play some part in the biochemical dance that becomes our fibromyalgia symptoms.

Safety Concerns

As milnacipran is similar to antidepressants and other medications prescribed for psychiatric disorders, there is some concern over an increase in suicidal thoughts, especially in individuals under the age of 24. Contraindications include simultaneous MAOI use (or use within a 14-day period following the last dose of the MAOI) and patients with uncontrolled narrow-angle glaucoma.

Another Times Article?

Is perhaps now a good time for another NY Times article taking back all the crap about this being a “real” disease? How many drugs do you need on the market to establish that this is not some modern-day hysteria (I’m looking at you, Elaine Showalter) or BS need for attention?

Of course, the unbeliever responds: “No number of medications will convince us, because all it means is that there are a lot of you out there deluding yourselves, and the pharmaceutical companies don’t care where their bucks come from.” All right, that’s fair enough, I suppose. But here’s my question: what on earth gives you the right to decide that anyone else’s pain is not “real” in the first place?

Nobody (well, nobody sane) thinks a cancer’s patient isn’t real. Yet, until the X-ray and later the MRI and PET scan technologies were commonplace, no one could “see” the cancerous cause of the pain inside the body — at least, not until the autopsy. And yet, with fibromyalgia and CFS, we have a whole host of otherwise intelligent, educated men and women ready to dismiss the reports of thousands of other intelligent, educated men and women simply because … why, again? You can’t “see” a cause?

You mean you can’t see a cause yet.

And even that’s not the whole truth, for of course there are observable, measurable differences in the fibromyalgia patient’s biochemistry.

But, no. We’re the cranks. We’re the crackpots. We’re the ones who need attention. Frankly, I think it’s quite the other way around. I think the unbelievers are the ones who are a little unbalanced — or at the very least, incapable of rational thought — and greatly in need of some attention. I think that’s why they go against the great majority of doctors and researchers who understand the quite simple truth: that even when we don’t understand a disease’s origins, cause, or mechanisms, the fact of our lack of understanding has nothing to do with whether the disease exists.

In other words: just because you don’t understand fibromyalgia thoroughly, it doesn’t mean fibromyalgia isn’t real.

Other Resources

More information on Savella from the manufacturer

Here’s another article on Suite101 about Savella.

Did a UK Woman Commit Insurance Fraud By Claiming Fibromyalgia?

I have a Google news alert for “fibromyalgia or chronic disease or chronic pain” (and some other search terms related to this blog’s purpose), and that’s the only way I would have ever found the following snippet from a site called No Claim Discount. This seems to be a news site in the UK for the insurance industry.

Joanne Kirk of Preston, is suffering from, what has been deemed as, a landmark judgement against her for insurance fraud. Initially attempting to claim £800,000 in compensation after a rear-end shunt in 2001 the claim was finally settled for £25,000. Of course, such a case will involve a level of investigation and it seems Ms Kirk had no inkling that insurance fraud investigators might be filming her driving, walking and carrying shopping despite her claiming she had developed fibromyalgia, a condition which causes chronic pain in muscles and ligaments. She originally stated she required crutches or a wheelchair to get around and could only walk a few steps without the assistance of another person.

Unlike most insurance fraud convictions which see defendants given no more than a slap on the wrists, Joanne Kirk was fined £2,500 and ordered to play the insurance company’s legal costs. The tables were certainly turned as her legal protection insurance was revoked leaving her with the cost of the entire bill – somewhere in the region of £125,000.

Realizing that:

  • We don’t know the full story from this blurb, much less have any of the details from the trial itself;
  • We don’t have Joanne’s side of the story; and
  • This piece, if not the site as a whole, is obviously biased in favor of the insurance industry (it’s titled in an entertainingly sexist way “Women, Their Handbags, and Faking It For Money”)

… we just don’t get enough information from this piece to draw any kind of conclusions. But I can tell you my first reaction upon reading that Joanne was filmed walking and shopping after claiming fibro: So what?

Is this just a case of not understanding fibromyalgia? That’s certainly a possibility. In my own experience, I frequently have days that are much better than others, in which tasks like shopping and going to the park with my child are an absolute breeze. I also have days in which I can’t get out of bed, and days that fall anywhere in the middle.

Of course, the piece also states that Joanne had told someone involved in the case that she could only get around with the aid of crutches or a wheelchair. Still, I have to wonder if what she actually said was something more along the lines of “when I have a flareup, I need crutches or a wheelchair.”

The truth is that we don’t know — we just don’t have enough information here. The only conclusion I can draw is that whoever wrote this article is a bit sexist, or at least felt comfortable pretending to be for the sake of being entertaining, and that s/he has a lot of disdain for Joanne, if not fibromites as a whole.

I’m also concerned that, even assuming Joanna did commit willful fraud here, this story will just give more ammunition to the unbelievers.

At a minimum, it’s a good object lesson in dealing with legal issues concerning your chronic disease:

  1. Be precise with your language. Don’t make sweeping generalizations. Be exact, and consider thoughtfully how your words might be misconstrued.
  2. Keep a diary of your symptoms. This is probably the best advice any chronic pain patient can take, no matter what the purpose. It helps in so many ways, and I hope to write about that in much more detail later on. But for legal purposes, a diary or log that’s kept contemporaneously with (at the same time as) your symptoms is invaluable evidence.
  3. NEVER EXAGGERATE.  No matter what. Just don’t do it.