The Truth Hurts

I’ve been struggling with this post a really long time.

The reason for the conflict is simple: I’ve presented a fairly consistent image of successful pain management techniques here. And for the most part, that’s been true. Heck, it’s been completely true – until fairly recently.

What happened was this: I found myself in a hellish situation — staying with some friends (now former friends) who … wow, how to put this? Let’s say “had some issues.” They, and their kids, systematically worked over the course of several months to make life harder than it had to be. And it all ended in a fabricated explosion designed to push us out — myself and my child, that is.

Well, you don’t have to tell me twice. Despite the massive amounts of stress and pain I was dealing with, I managed to pack us up and get out within a day. We drove two hours late at night, ending up at a hotel in Raleigh, NC, where I slept for the first time in over six months on a real bed. The next day, we met my brother for lunch, then took off yet again in the poorly-air-conditioned car – this time for Savannah, a good six hours away.

That’s where I am now — my daughter is spending a few days with her dad in South Carolina — staying with a true friend who needed some help and had an extra bedroom.

The truth is: I am quite literally homeless. Without a place to call home – at least, of my own.

That’s what chronic pain has done to me. I am unemployable, I have lost the law license I worked so hard for, and I have no home and no regular income — all because I have chronic pain.

The reality of this has made me even sicker, much as the insane additional amounts of emotional stress have contributed to it as well. The practicalities are that I have had to steel my body to do things it just is not capable of doing in the past weeks. And it is screaming at me right now.

“Do you get it yet? Has it soaked in through your incredibly thick skull yet? You are DISABLED, you moron.”

I hate it when my body yells at me. It’s so … rude.

I have no idea what’s going to happen. For the first time, I’m scared. Truly, bone-crunching-ly, soul-shaking-ly scared. This arrangement won’t last much longer — it can’t, because I won’t let my friend take on one more thing she has to fix at the expense of herself, and because … well, I just won’t let it. And what happens then feels like one huge question mark.

All I can do now is cry, while my daughter isn’t here to see me, and lie here on this bed, because I can’t sit up without wanting to scream. And while I know this current level of pain will not last — it never does — it will ease, and I will rise again — the enormity of the other problems makes it all seem like one great big giant taffy ball of evil trying to trap me in a box.

Perspective is hard to come by these days, in other words. So if you’ve come here looking for “thriving!” tips (gaaah, I want to rip that word from the English language right about now), you might want to go elsewhere for awhile. Or look through the happy/healthy archives. Stay away from current posts for awhile. Because I’m fresh out of thriving. Because the truth, quite literally, hurts like hell.

The Wall: Stress Will Make You Worthless

Image of a brick wall

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

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

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

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

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

Screenshot of Facebook update about stress and energy levels

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

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

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

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

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

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

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

Drug Apathy: Why I Have It, Why It’s Dangerous

I’ve been on tramadol for over six years now. I know quite a bit about it — the maximum recommended dosage (I don’t take it, ever); the contraindications; the 411 on withdrawal (bottom line: not nearly as bad as the forums and message boards might lead you to believe). And lately, I’ve noticed a growing sense of blase “whatever”-ness about it all.

It struck me especially a few moments ago as I wrote a FB status on my wall to the effect of “I have a headache and I took an extra tramadol and some Aleve for it – anybody got any home remedies to try, since that didn’t work?”

I posted it, thinking how funny it was. And then I thought: Wow.

Isn’t that a little — off?

Shouldn’t I have started at the other end of the treatment spectrum and worked my way up, rather than at the top and then down?

Sure, I was being a little funny with the FB post. Sure, it was a little exaggerated for effect — I’m not quite that apathetic about what I put in my body. But I’ve been on it for six years now. The days of me feeling all “oh my GOD!” about it all? Long gone. I no longer worry about seizures or respiratory distress.

Maybe I should.

I also have a confession to make. For all my “take the damn pills, if you need ’em” preaching — and I still absolutely believe that pills are NOT the devils they’ve been made out to be by some — I did decide recently to cut back on my medication. Why? I can’t really tell you. I had absolutely no ill effects, no changes, nothing that would have caused a rational person to worry. (But then we’re seldom rational about medication for chronic pain, in case you haven’t noticed.)

So, I cut back within a few weeks — after six freaking years, let me remind you — and despite all the horrible nightmarish stories I read on the web in various chronic pain forums about tramadol withdrawal, I had absolutely none of any of the following:

  • massive night sweats
  • severe insomnia
  • skin-crawling feeling
  • breakthrough pain
  • chills

Did it feel uncomfortable? Hell, yeah! But it wasn’t all that bad.

I don’t ever want to take those little white pills for granted, you know? Their efficacy, or their power to harm if misused.

No more tramadol for headaches for me. (Besides which – hello! – they didn’t work.)

New Diagnostic Criteria for Fibromyalgia

Well, this kind of took me by surprise.

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

Tender Points Versus the New Criteria

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

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

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

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

Potential Impact of New Fibromyalgia Criteria

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

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

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

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

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

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

Canada Doesn’t Fund Fibro Research – But Won’t Take Fibromite’s Donated Blood?

OK, what’s up with this, Canada?

A lot of that stems from the fact that fibromyalgia, chronic fatigue syndrome and Multiple Chemical Sensitivities aren’t recognized as chronic illnesses, Bested notes, and consequently receive no funding for research. Nor do they figure well in resident training.“At the government level, they’re invisible.”

Yet last month, Canada became the first country in the world to ban blood donations from people diagnosed with chronic fatigue syndrome in the wake of groundbreaking study published in the prestigious journal Science, advocates point out. U.S. researchers discovered a human retrovirus, XMRV, that could be linked to CFS. The move was a precautionary measure as it’s feared the virus, which closely resembles the AIDS virus, could be transmitted through blood transfusions. Australia followed suite a few weeks later.

“We can’t get funding because we’re not considered a chronic illness, and yet they won’t take our blood,” Saraiva says.
“We’re dealing with powerful, wealthy insurance companies who have a bottom line,” Samosas says. “A lot of people have had horrendous cases in court with CPP and fight for years.

Clinical depression often blamed before diagnosis of fibromyalgia, Healthzone (Canada)

Seriously, what gives? How about we drag you kicking and screaming into the 21st century? With all the talk about how the Canadian system is a model national health care policy, can we not live in the Middle Ages here?

I seriously doubt the U.S. is much better in its level of funding of fibromyalgia and other chronic pain research but here’s the thing: chronic pain costs money. A lot of it. Add up the doctor’s bills, the prescription costs, the lost time and productivity for businesses whose employees suffer from it … you’re looking at a big number.

Fibro and chronic pain conditions are not a “lifestyle choice.They’re debilitating diseases, and it’s time to stop treating those of us with these conditions as if we’re lying liars who lie and just want to sit on our asses all day eating bon-bons. I don’t know a single fibro sufferer who wouldn’t give her or his right arm to be able to work and live like they used to again.

So shut up, already, and be nicer to us. It could be you in this position one day.

Do the Experts Agree on Anything About Chronic Pain?

I found a new-t0-me resource that I believe I’m gonna have to devote a few days to exploring: this blog, “Overcoming Pain,” from Psychology Today . I know, I know – the fact that a chronic pain resource is located within a site devoted to psychology caused me a few moments of hair-pulling and a low-simmering rage but — check it out.

It’s not the same-old “pain is all in your head — by which I mean you’re freakin’ nuts, people” crap.

There’s some good info in there, like this piece on a recently released update to guidelines from (deep breath, ’cause this is a mouthful) the American Society of Anesthesiologists Task Force on Chronic Pain Management and the American Society of Regional Anesthesia and Pain Medicine. (Phew.)

Although I should point out that the author of the blog, Dr. Mark Borigini (a board-certified rheumatologist, not a psych-dude), says:

By some measures (such as the proliferation in the marketplaces-both legal and illegal-of prescription pain medications), one could make an argument that chronic pain in these United States is becoming more prevalent, and perhaps even more intransigent; perhaps a manifestation of the chronic dissatisfaction and depression that seems to have become a part of living for so many.

Yeah, I don’t know about that. Personally, I think for most of us the depression comes after the freakin’ pain.

Anyway, the piece itself is worth reading. The guidelines go down the list of usual suspects — NSAIDs, opioids, tricyclic antidepressants, etc. — and at least they’re saying pain should be treated pharmacologically — or at least that meds should be considered for chronic pain.

A medical professional group acknowledging that chronic pain is a medical problem and that medication should be considered part of the treatment approach: progress!

Woman Meditating Against a Globe Backdrop

Meditation 101 for Chronic Pain Management

In previous posts, we looked at whether meditation works to relieve chronic pain as well as the science behind meditation’s efficacy as a pain treatment option. In this post, we’ll look at some simple ways to implement a meditation practice into your own pain treatment program.

Woman Meditating Against a Globe Backdrop Meditation: How New Age Do You Want to Go?

You may well be relieved to discover that when it comes to meditation, there’s absolutely no need to go the whole “crystals, rainbows, unicorns” New Age route. I mean, you can, if you want to, but you don’t have to.

Personally, I find a few well-placed props that help set the mood to be a welcome addition. Soy candles and the occasional incense stick or powder in a darkened room with a little spa-type music playing in the background help my way-too-active consciousness let go of its death-like grip on controlling my life and embrace relaxation.

Do be careful about using incense, though, especially if your respiratory system is in any way compromised.

But if that makes you uncomfortable, or merely roll your eyes mightily, then rest assured: no New Age props are required. Neither is chanting “Om” or anything else.

Meditation is simply the act of focusing your thoughts, or alternatively letting go of the need to obsess — the act of utter relaxation, tuning in to your body and mind, and allowing yourself simply to be in the moment. Sometimes props help with that, but if you find yourself uncomfortable at the thought of all the trappings, then don’t go that route. Just wear comfortable clothing, unplug the phone (and turn off the cell), get quiet and sit.

How to Meditate

Meditation is not some weird, scary thing. It’s something you already know how to do, but in a possibly new context.

You can meditate in any number of ways:

  • Visualizing some desired outcome or a peaceful natural setting
  • Counting your breaths
  • Focusing mentally on one phrase or word
  • Simply sitting and allowing your thoughts to float away like butterflies

There are also more advanced techniques you can pick up from traditions like yoga or Transcendental Meditation, or other practices. But for our purposes, we’re going to outline a simple breath-focused practice that I use to help manage my pain.

What You’ll Need to Get Started

  • Comfortable clothing
  • A comfy place to sit that supports your back (lying down isn’t advisable, at least at first, as it can signal the body it’s time to sleep — and since chronic pain patients are often sleep-deprived, this will be counterproductive to meditating; however, you can practice a form of this meditation lying down in bed before you sleep, and it should improve the quality of your rest)
  • Silence — no interruptions of the human or electronic kind
  • If you like, you can use New Age or spa background music. I advise against candles at first – you might find yourself worried about a fire starting, especially with your eyes closed

The Practice

Get comfortable – either cross-legged, perhaps with pillows supporting your knees, or with your feet on the floor. Cover yourself with a blanket if you’re the least bit cool. Place your hands in your lap, palms up, left hand on top of the right, so that your hands are basically right in front of your pelvis.

Close your eyes, and:

  1. Phase One: Breathe. Just breathe. In and out, without trying to control the breath. Turn your awareness to your scalp, and check in with your body there. How does it feel? Don’t try to change it, just observe. Then slowly scan your body, moving from the scalp to the forehead, to the eyes, the chin, the neck, the shoulders, etc. – all the way down to your toes. This doesn’t have to take a long time — just check in briefly, observe, and move on.
  2. Phase Two: Focus on the Hurting Parts. Find the part that hurts the most from your body scan in Phase One. Settle your awareness on this spot. Talk to it silently — not the way you usually do (“God, I hate you! Why do you HURT all the time?!”) but as if that body part were a small child in pain. What would you say to that child? You wouldn’t tell her you hate her! You’d comfort her. You’d tell her how much you love her. You’d say how sorry you are that she hurts. You’d tell her how proud of her you are. So say that to your in-pain body part. Offer it love and compassion.
  3. Phase Three: Rinse, Repeat. Do the same for any other intensely pained parts of your body.
  4. Phase Four: Envision Health. Now, bring your awareness back to the center of your self — somewhere around your solar plexus, usually, but wherever feels “right” to you. Allow an image of perfect health — your perfect health — to come to mind. See yourself doing the things you long to do, feeling great, moving easily. Try to bring as much sensory awareness into it as possible — not just sight but scents, the sensation of touch, sounds, tastes. Make it as real as you can. Stay with this image for as long as you can, up to ten minutes or so. When you’re ready, imagine that scene in your mind being enveloped in a glowing golden-pink bubble, and floating up to the universe where it will start to gather energy and begin to manifest. (Or if that’s too “whoo-whoo” for you, then just let it fade.)
  5. Phase Five: Coming Out. Don’t rush the re-entry! Once you’ve let go of the vision of health, slowly bring your awareness to what’s going on around you — but don’t open your eyes just yet. Take a minute or two to become aware of your surroundings. Then slowly open your eyes. You might find it helpful to shake your hands vigorously for a few seconds to ground yourself again. Drink some water, get up and move around — basically, reconnect to your body.

That’s it.

This practice can take as little as ten minutes or as much as an hour – it’s totally up to you. Better to do it for a few minutes every day, than for an hour once a week, though. Set your schedule, ease into it if you must, but try to do it daily.

The Benefits

What can you expect from a regular meditation practice? It varies from person to person, of course, because we’re all different, but basically you can expect:

  • Heightened sense of connection to your body
  • Lessened pain
  • More restorative sleep
  • Lower blood pressure
  • Reduced stress
  • Increased ability to deal with flareups of pain and stress

That’s worth giving meditation a good trial run, isn’t it?

Photo Credit : AlicePopkorn via photopin cc

Sue E. Ingrebretson’s FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness – a TTD Review

FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness — Susan E. Ingebretson. Published by Norse Horse Press 2010.

The One-Minute TTD Review

Sue Ingebretson’s new book, FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness * is a must-have addition for any fibromite’s library. Ingebretson’s personal history with the illness illuminates with good humor and compassion a difficult topic for all chronically ill people: the role of personal choices in the recovery process. Packed with solid scientifically-supported advice wrapped in a common-sense approach, FibroWHYalgia will help any fibromite thrive.

About the Author

Sue Ingebretson’s bona fides to write this book are solid. Her involvement in the fibromyalgia community extends back fourteen years. She’s the Director of Program Development for the Fibromyalgia Research and Education Center at California State University, in Fullerton, CA. Sue’s also written for the NFA’s FibroAWARE publication. And, of course, she has fibromyalgia herself.

Overview of the Book

Sue tells her own story through the first three chapters, illustrating the path so many of us tread on our way to diagnosis and treatment plan success, through humorous and sometimes maddening accounts of the endless parade of doctors with varying degrees of insight into her worsening health.

Chapters four through eight cover different aspects of Ingebretson’s philosophy of treatment: diet, exercise, stress reduction and emotional balance, plus strategies for meaningful change. The last chapter summarizes what Sue calls the “ten root causes of chronic illness” — genetic predisposition, physical trauma, emotional/mental trauma, malnourishment, external toxins, internal toxins, inflammation, infection, hormonal imbalance and thyroid dysfunction.

The Extended Review

Sue’s hit this one out of the park, for the most part. My shelves are overloaded with books promising a variety of fabulous outcomes – promising mind you – but never quite delivering. I came to the conclusion after deep and thoughtful study of this subject for over ten years that (A) there is no cure for fibromyalgia and (B) any successful treatment plan must be simultaneously comprehensive and flexible.

Sue’s approach confirms my own suspicions about this illness, and outlines a workable get-tough plan that’s both realistic and ambitious. Ambitious because any change will be hard for us mortals; realistic because it doesn’t require massive doses of questionable supplements and radical overhauls of lifestyle.

Well, back up – I suppose that depends on your definition of “radical.” For some, undoubtedly, the changes Sue advocates for diet and exercise will seem radical. But Sue’s writing style has a relaxed, reassuring tone to it — rather like having a long heart-t0-heart with an older sister who’s been down that road you’re walking for the first time and knows just how to navigate it.

There’s nothing revolutionary here – but that’s a good thing in my opinion because it reflects reality. There is no magic pill — no one treatment to rule them all. The implications underlying Sue’s book suggest that maybe there is no such treatment out there waiting to be discovered, because the systems and mechanisms at work here are way too complex to be resolved by a single approach. I think she may well be on to something.

But even if there is such a treatment out there, just waiting to be discovered, we still deserve to thrive while we’re waiting. FibroWHYalgia presents a compelling argument for one approach to getting there. Easy? No. But simple, and practical.

Bottom line: Buy it. Read it. Reread it. Take it to heart.

*Remember: all links to products are affiliate links. Costs you nothing extra, but helps me keep this site afloat!

An Interview with Sue Ingebretson, Author of FibroWHYalgia

I’m probably most excited about being back up and running again on the interwebs because of this one post, right here: an interview with Susan E. Ingebretson, author of FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness.

(Please note: All product links are affiliate links. That means you pay exactly the same amount, but I get a little bit for your purchase, which helps me keep this site going to bring you all more great stuff like this post!)

I’ll be reviewing the book in a subsequent post. Right now, grab a cup of coffee (or even better – green tea) and meet your newest fibro-friend and mine — Sue Ingebretson.

Sue, thanks so much for doing this. Tell us how you got “introduced” to chronic pain, personally.

I think I’ve had the “typical” fibro body since puberty. I didn’t know it then, but the difficult menstruation, digestive troubles (that’s a kind way to refer to the intestinal tornado), dark under-eye circles, etc. all reflect someone starved of nutrition. That, paired with my environmental exposures to toxins (farm chemicals) made for a likely path of pain. I don’t believe it’s coincidental that my first exposure to dental mercury and my first experience with IBS came at the same time. Stir in the mix of hormones, and there’s a recipe for pain and general poor health.

My first experience with chronic pain came at age 15 after a school bus accident. The bus went off a bridge (swung off with the front axle stuck on the guardrail and the rear of the bus stuck on the creek bank). I was lucky to have only suffered a concussion and a broken nose. However, relentless pain followed that event for several years. It just sort of faded away in my early 20’s as a new mom I became “too busy” to pay attention to it very much (of course that’s an over-simplification). I was aware of chronic low back pain, but just thought it would be with me for life.

It seemed to wax & wane depending on circumstances and other injuries. The IBS, however, never really went away.

Had you ever known anyone with chronic pain before your symptoms started?

During my school years my mom was always sick. Now we know she suffered (needlessly) with terrible food and environmental allergies. At the time, though, it was awful seeing her cough, sneeze and walk hunched over from pain. I’m sure that today, she would be diagnosed with fibromyalgia. At that time, the doctors were terrible to her. Small town doctors gave her very poor advice.

What prompted you to write this book?

I was active in my writer’s group working on various children’s projects. I’ve always loved writing for children and teens. As I succeeded in my personal journey to get healed, I found myself speaking on the subject as well as answering many desperate phone calls and emails. I told my writer’s group that various projects were on hold pending this or that speaking engagement. It finally became apparent that I needed to write down my experience, so I could give people a bigger picture of healing rather than a 30 minute phone call or back and forth emails. I intended to write a quick “health pamphlet” and be done with it. Instead, it took three years and ended up as a book.

In the book, you write (very humorously, I might add!) about your myriad experiences with the medical profession in seeking a diagnosis — what I call “the bad doctor stories.” Were you satisfied with your response to the “bad” doctors — the ones who dismissed you, the one who told you to be grateful you didn’t have heart disease — I especially liked the one who told you that you were afraid of getting older! Anything you wish you’d have said or done in retrospect? Or, alternatively, any advice for people currently seeking diagnosis who are dealing with their own “bad doctors”?

I have lots of things I’d like to say to my “bad” doctors, but I won’t. It makes me think of a friend who has a t-shirt that says, “I’m a writer. Be nice to me or you’ll end up in my next novel.” [NB from Sherrie: HA! I totally am stealing this.] There’s something to be said of writing down your injustices, however, I have no intention of giving them my book and saying, “So there.” I doubt it would make much difference. I just feel better myself for getting it out there. I’ve heard hundreds of stories from others who all have their share of similar (and/or much worse!) stories. The thing is, many doctors are simply working with the limited knowledge that they have. Very little is discussed in medical school about autoimmune conditions and about fibro. They’re tough to nail down (diagnostically) and tough to teach. It takes a dedicated doctor who is interested in and/or specializes in neurological and immune system conditions.

My advice for anyone dealing with doctors is to be as business-like and prepared as possible. When you give vague information, don’t be surprised at vague responses. Go with notes & questions. Ask for a specific action plan. If you feel your voice is not heard, move on! Find another doctor who will listen. They are out there.

We frequently hear “it’s all in your head” — which, as you point out, is somewhat accurate, since that’s where our brains are located, generally speaking (I wouldn’t presume to generalize, of course…). I have a theory that this phrase has become such a hot-button issue with the chronic pain/fibro community that we reject the very measures that could help us – meditation, cognitive behavioral therapy, even antidepressants — because we think we’re being told the pain has no biological cause, which of course isn’t true at all. In a manner of speaking, we’re at risk of cutting off the nose to spite the face. What do you think of my theory?

I agree with you, and here’s why. We all agree that stress is a HUGE factor in fibro, right? Where does stress originate? From thoughts, the brain. You don’t say, “my pinkie finger hurts, it must be stressed.” Stress is a mental/emotional component of illness that has VERY physical results. The thoughts/emotions are real, and so are the symptoms. The conflict comes from the (erroneous) perception that if it’s as simple as a thought, we could stop it or somehow have control over it. We can, in a way, but it’s not simple at all.

Stating that any condition is “all in your head” implies CHOICE. We choose to be sick. We choose to watch our bodies physically fall apart. That’s just silly. No one would choose that. The problem is that some of our actions are exacerbating our symptoms and it’s a learning process to find out what to do about it. Cognitive Behavior Therapy can be very impactful. I just took part in an 8 week CBT study that I found fascinating. Everyone in the group had positive results and I look forward to seeing the study published.

Again, the hot-button issue comes from the insinuation that we could do something about the condition if we only wanted to. There’s kernel truth to that, but not in the way that it’s meant. The comment is a hurtful, and non-productive jibe.

What’s funny is that I now feel so confident in my understanding of why I have fibromyalgia, that I don’t take comments like that personally at all. I’ve been in groups where others get fired up about the legitimacy of their condition. I don’t give a hoot. If someone wants to rant about fibro not being real, that’s their issue, not mine. I know exactly what I have and I take seriously my responsibility (to myself) to do something about it (self-care). I’m not personally offended at all by what I see as ignorance in others.

How can those of us who’ve been at this particular dance for awhile now best help those who are just getting here? What can we do better to advocate for and help the newly-diagnosed get the treatment they need? To put it a different way, how can we empower the newly-diagnosed fibromites?

I love this question! First thing is to blow away the mis-information found in media, doctors, articles, etc. that tell newbies of their dire future. That simply is NOT the case. I know many, many people leading full, busy, productive lives with fibro and other chronic conditions. The body is DESIGNED TO HEAL! YAY!

I had a friend once with a temperamental sports car. He knew it so intimately that he could tell by the sound of the engine what it needed. He lovingly cared for that vehicle and it served him well with nary a hiccup. Too many of us treat our bodies as vehicles that should always go when we step on the gas — never mind that there’s no fuel in the tank and there’s never been regular maintenance.

Another big misconception is that fibro is degenerative or progressive. It is NOT. The condition may progress or worsen IF the body is not cared for and allowed to deteriorate. That would happen to anyone. What if we took a completely healthy person, put her in bed most of the time, fed her foods with little to no nutritive value, and asked her to think constant negative thoughts. What would happen to her body? Would she deteriorate? The body needs oxygen, movement, nutrition, hope for a positive future.

Guess I got off on a tangent, but I am passionate about grabbing the newbie before he or she can be indoctrinated into the Eeyore thought process that nothing will change. A body in pain is an intelligent body. It’s telling you (OK, maybe screaming at you) that something is wrong. Something needs to be fixed. Only you can determine what that is and get to work.

On another note, I’ve personally experienced and seen that fibro in newbies has a better chance of diminishing or being next-to-non-existent once they figure out what to do to fix it. (I never say it permanently goes away). I’ve seen people who have not been ill that long, go on crusades to fix their bodies and do very, very well. That was the case for me and I was symptom-free for quite a while. Maybe a year or two? Then I slacked off on my health maintenance and took my wellness for granted. The fibro came back during a time of extreme stress. It’s never come back nearly as bad as it was before, but it’s still there — just a wee bit.

So — there again — I encourage newbies to take charge, take action, and figure out your own game plan!

In your book, you advocate a “cleaner” diet (more organic, lower on the food chain) and exercise as the starting point for a fibromyalgia treatment plan. How can those of us who are suffering economically and those of us particularly prone to post-exertional malaise begin to implement these lifestyle changes?

I can only speak for myself and from the experience of others I’ve seen, but repairing a body nutritionally has profound results. The same goes for fitness, but I’ll start with foods.

It’s been my experience that healthier foods can be much cheaper. Boxed, packaged, processed foods are pricey. You’re paying for the packaging and advertising, not the products. Processed foods are made of the cheapest ingredients on the planet. Water, HFCS, trans fats and artificial flavors and colors are the main four ingredients in almost all packaged foods. They’re cheap (for the manufacturer) and a source of empty, crappy calories.

I always say to buy the best quality foods and supplements that fit within your budget. Understandably, not everyone can buy always buy organics. But it’s a trade-off. Maybe you can choose the organic broccoli and pass up the toaster waffles? It’s all up to you. For me, it was a long process. I had to learn to value my body and decide that it was worth the “better” ingredients. Again, better does not always mean more expensive.

I go into detail in my book about soup. It’s about the cheapest thing you can make. Healthy, satisfying, nutritious. Beans are cheap, too. Produce can be. I can go to a local swap meet and come home with bags of produce for under $15. Maybe you can seek out local markets? Local growers? Better yet, make a small garden a family project this summer. You can’t get a cheaper food than buying it from seed. I’m no expert, but I’m told many veggies grow abundantly with very little care.

As far as fitness goes, my theory may be controversial. I believe that you have to keep moving. Yes, I know it hurts. I used to hurt (terribly), too. I believe that the more fit you are, the more oxygen you pump through your body (fibro people are shallow breathers), the healthier you will be. Start out slowly, but KEEP GOING. Don’t stop. Obviously, you don’t want to cause physical damage — especially if weight is a significant issue for you — but seek out fitness routines that are non-impact. Simply jiggling on a mini-trampoline is powerfully healing for both the body and the mind. Remember that the brain gets a big boost from exercise, too. Tai chi has been around for a bajillion years for good reason. It’s non-impact and provides a great body/mind benefit.

Try walking, Wii, ping pong with the kids, swimming, the gym, etc. Whatever you do, make it routine, meaning do it regularly. Vary your activities so you’re not doing the same thing each time and keep going. Grab a friend for accountability. Write down your goals (and sign it!). Chart your progress. Whatever you need to do to motivate yourself. It doesn’t take much exercise. Even 15 minutes a day 3 or 4 times a week is better than nothing. Exercise and eating right is your way of telling yourself that you are important enough to care for. YOU have value!

I love the whole book – and I’m totally not just ass-kissing here – but I think my favorite part is where you discuss the “perfect environment” for fibromyalgia to flourish. “Talk” a little more about that.

You’ll probably note that I really say the same thing in my book over and over in different ways. Different people need to hear messages differently. I wrote that part in sort of a knee-jerk reaction to several people I was “dealing” with at the time. As I mentioned, I’m often referred by others with fibro, so I used to get a lot of phone calls and emails (I now try to limit it to email). Anyway, that section is sort of an amalgam of a couple of people I was dealing with. They said they wanted health. They said they wanted to get better. But their actions did not reflect that. No one wants chronic illness, but many people are surprised to learn that what they’re doing is making what they already have much worse. I sort of hold a mirror up to that. They might not always see a reflection that they like (and they might not be happy with me), but it’s meant to encourage and educate. In all things, I try to affirm people. BTW, I see myself in that reflection, too.

You write about achieving balance in Chapter 4 and later in the book as well, but balance isn’t a static condition, of course – it’s a constant series of readjustments, and sometimes we need to play both sides of the extremes in life. Where do you stand on the question of “honoring your limits” or “pushing beyond those limits”?

Boy that’s a good question. I had to learn (the hard way) to set personal boundaries. I had to learn when to say no to others and when to say yes to myself. That’s a tough lesson for many moms, in particular. At the time when I discovered “balance,” that was quite the novel idea for me. I thought I was only worth what I could produce or do. I didn’t see any value beyond that. That’s where balance comes in. My view of balance 5 years ago looks nothing like balance for me today. Now, I am much more relaxed, calm, content. It’s a long twirly path.

It took quite some time to hear my inner voice tell me when I was honoring my abilities and when I was not. It’s a learned process. It’s not really one that’s easy to teach. It’s a self-guided journey.

I see your “pushing beyond those limits” comment in two ways: physically through exercise, and physically/emotionally through activities. I do believe in pushing yourself through fitness to places beyond your belief system. When I walked with a cane, I certainly did NOT believe I could become a gym rat and lift weights 6 days a week (I no longer do that, by the way, and need seriously to get back to it!).

The point is that my belief system told me that my body was broken and had limitations. Only by experimenting and challenging those perceptions did I learn that they were not accurate. No one could tell me that, no one could show me that in a book, or teach it in any way. I had to learn that for myself.

And, for physical/emotional activities, I make planned, pragmatic choices about the activities I participate in. This past weekend, I attended a 3 day expo about an hour away from home. The drive each day, the full schedule of workshops, and the stress it brought was absolutely exhausting. However, it was a health expo that I thoroughly enjoyed it and felt it was worth the battering my body took. I did push beyond my limitations because I deemed it important and valuable. It passed my personal benchmark for importance. Would I have done that for a Star Trek convention? Not on your life!

All I can say is that challenges are good. How can we know what we can do without challenging ourselves to do it? I have a friend who was significantly overweight for much of her life, and now runs marathons. She’s an amazing example of a person who has challenged her own self perceptions.

What do you think it is about fibromyalgia that makes one person’s treatment another person’s waste of energy and money? Why can’t one treatment rule them all?

We are all so very different. From a personality standpoint and physiologically speaking. We each react to foods differently. We react to experiences differently. There are more factors causing us to be unique than causing us to be the same. We’ve sort of taken on the erroneous idea that meds and treatments are a one-size-fits all solution. Go down a pain relieving aisle at the drug store and see how many different headache remedies there are. Some feel Exedrin is best, for others it Advil, or Tylenol. We each metabolize what we take internally in our own way. That’s why nutrigenomics is so exciting to me. It’s exciting to think of a field of medicine that is tailor-made for me, specifically. It’s a growing study.

The sad thing about fibromyalgia patients is that they’re often “sold” treatments as something that works for everyone. Then their pain is compounded by feelings of failure. As if they’ve personally done something wrong.

There is NO ONE treatment that works universally. There are many healing factors that work for most, if not all, like what I call the Restoration Trio (nutrition, fitness, stress-relief/emotional wellness). But even within those treatments there are a myriad of options available. That’s why it’s so important to figure out what works for you. The only way to do that is to create an action plan. Do something!

What’s the best advice you’d give to someone in the throes of a horrid flareup? Starting with the first moments, what two or three things will bring relief to most?

First of all, thanks for spelling “throes” correctly. That makes me smile. Can’t tell you how often I see “throws of a flair up.” For a writer, that’s enough to send me into a flare!

Back to the flareup — it’s important to immediately calm yourself with whatever methods work for you (non-food related, please). First and foremost, tell your mind “stop!” Stop the emotions or whatever it is that now surround the flare. Tell yourself that you are now going to reverse the momentum you have and go back toward better times (less pain). Take a walk, especially in nature. Play Clue or Boggle with your kids. Take a bath or read a favorite book. Take a swim. Nourish your body inside and out with healthy food and a healthy environment cleared of clutter, etc.

When you feel your heart rate begin to settle down, tell yourself that the moment of “panic/worry/stress/anxiety” is over. It’s now time for recovery. Breathe deeply. No self-recriminations. No mental should’s or shouldn’ts. Remind yourself that this period of recovery is necessary to heal. Even if it’s just 15 minutes, your body is telling you that it needs to come first.

Later on, it’s very important to analyze what caused the flare. Most often, it’s obvious, but others not-so. If it’s an obvious thing, make an action plan for how you will avoid that in the future. If your flareup was caused by other people, you can’t always avoid them, but you can avoid how they affect you. That’s within your jurisdiction.

If it’s not so obvious, do some detective work. Consider your foods or environment. Look back at what you ate and where you were. I’ve had flareups and then realized that a gardener had fertilized the grass. Or that I’ve eaten a salad in the restaurant, and suspect toxic ingredients in the dressing.

Learning how to avoid flareups is the best solution of all. I know that’s a “Duh Barbie” statement, but it’s true.

What’s next for Sue? Will you write another book? Will you keep blogging at Rebuilding Wellness?

Yes, I plan to keep blogging — in fact that’s what I should be doing now! [NB from Sherrie: You can also catch more of Sue’s more frequent writings at the FibroWHYalgia Facebook page.]

I have many other projects planned and speak locally and do workshops. I have three workshops set up for April and May as well as some blogtalk interviews.

I’m very fortunate to have a wonderful connection and relationship with Cal State Fullerton. I’ll be developing workshops for them which will result in a workbook to go along with FibroWHYalgia. I’d love feedback on what others would like to see in such a workbook. I’m also working on a book of encouragement for those with chronic illness. It’s a short book with affirmations, Bible verses, etc. written to encourage and support people who wish to make positive change in their lives.

You’re totally doing God’s work, you know that, right?

I do remind myself of that daily. It’s not my message, it’s all His. In fact, at my book launch, I had my pastor pray over the book that it will touch softened hearts that are ready to heal. I wanted my book prayed over before it went anywhere! This message is not about me. God is using my experience to help me help others (gee, that sounds Jerry Maguire-ish. Help ME, help YOU!). You know what I mean!

Indeed I do.

The Kerala “Cure”: Do We Have to Travel to India to Feel Better?

Clay Pot With Lotus Flowers Floating on Water

Read this and tell me you don’t want to go. Right. NOW:

The monsoon expends the last of its energy in the Indian state of Kerala, leaving plump raindrops on hibiscus flowers and puddles in the red mud roads. The air is thick but not oppressive, and I begin to understand the words of the local doctor, who says that monsoon season—nature’s own megacleanser—is the best time for treatment. Sipping sweet water from a tender coconut, I feel radiant from an hour-long herbal oil massage. The stiffness in my neck, which I once accepted as a necessary evil of urban living, has disappeared. Listening to the waves rolling up on the shore, I realize why this place, Kerala, is part of my treatment, too.

This, from “Taking the Cure in Kerala” from YogaJournal, makes me long for a round-trip ticket and a few weeks off. (Please note, after my frequent rants here and on Twitter against folks claiming to have the “cure” for fibromyalgia and other incurable chronic pain conditions, that I’m pretty sure they don’t mean “cure” in the Western medicine context but in the “damn, I feel nine kinds of better” sense.)

This made me think: is this what we’re all up against? Is THIS what we have to do to get better for real and for good?

Except – I already know the answer. The answer is “no.” Traveling to exotic locales and subjecting ourselves to round-the-clock spa treatments and yoga classes is not required to achieve health and wellbeing.

What is required, though, is just as out-of-reach, if you look at (A) what we as chronic pain patients know and measure that against (B) what we as chronic pain patients do.

Simply put: we know we need to change our lifestyles. But we don’t.

That’s the sad truth, folks. We all know we have to stop grinding ourselves down into a fine powdery version of our vital selves. We know we have to exercise – to move, often and every day. We know we have to cut out our bullshit and get real with ourselves and our current conditions. We know we have to meditate. We know we have to turn our backs on the sugary, chemical-laden crap in our diets and embrace organic and low-on-the-food-chain vegetables, fruits, and lean protein.

We know this stuff!

And we’re not DOING IT!

What’s the answer, then? If it isn’t a question of knowledge but of action — of actually making the changes we know we need to make — then how are we supposed to proceed here?

There’s something very romantic and enticing about “taking the cure in Kerala” — about making the grand gesture, fleeing our sad, sick lives and making wholesale change in a brand new, exotic locale.

But there’s just one problem with that (well, besides the pure impracticality for most of us and the exorbitant expense): it’s a lie. And it sets us up for failure when we inevitably return home.

It’s a lie because it suggests that the grand gesture is required — that nothing short of this kind of Eat, Pray, Love – style adventure will heal us. And that’s not true.

And it’s setting us up for failure because — well, damn, because it’s easy to put ourselves into low gear and embrace healthy living when we’re being massaged every day and don’t have to feed the kids every night.

What happens when we get back home? How successful will you be maintaining that glow of health and those new healthy habits when the pressures of daily life start clamoring for your stretched-thin attention?

Don’t wait for your ticket to Kerala to get better, is what I’m saying. Create Kerala where you are. Right now. Right this second.

Also? If you get a ticket to Kerala, can I come, too? I’m not crazy.