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

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.

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

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

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

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

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

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

Facts and Figures on Health Care Reform

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

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

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

Temporary High-Risk Pool and Pre-existing Conditions

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

Health Care Exchanges

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

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

Overall Cost Restrictions

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

More Information

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

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

I know, I know.

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

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

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

What Is the NFA?

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

FM Aware: A Great Resource for Fibromyalgia Patients

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

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

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

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

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

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

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

The Tramadol Diaries First Virtual Book Tour Proudly Presents Kelly McGonigal and Yoga for Pain Relief

From Sherrie: As I noted here earlier, Kelly McGonigal is a yoga instructor and Stanford University psychology instructor. Most importantly for our purposes, she’s just published a book titled Yoga for Pain Relief, and as a long-time Tramadol Diaries reader, she wanted to share some of the fruits of her labors with other TD readers in a virtual book tour.

Of course, I grabbed that opportunity! I’ve written about my experiences with yoga before, both here and in articles for other sites, but I really can’t say enough good things about yoga.

I joke that tramadol saved my life, and it did — but the truth is, so did yoga. Without my daily practice, I honestly doubt that I’d be here right now, joyfully writing this introduction in support of Kelly’s “labor of love.”  Chronic pain not only means we don’t move our bodies as we want to and should — it also means our psyches are burdened as well. It shouldn’t be a surprise to anyone that chronic pain patients have a high incidence of depression; as many of us say, “Let me stand on your chest for ten years and let’s see how long it takes YOU to get depressed.”

Yoga not only helps relieve the physical pain but it also gives me the tools I need to eliminate the suffering aspect of pain. That, in turn, greatly and positively enhances my quality of life and sense of wellbeing. Yes, I still hurt. The difference is, I’m not letting it define me, nor am I burdened with all those fearful, tense feelings that collectively comprise suffering.

So, without further ado, here’s Kelly with an excerpt from her new book, Yoga for Pain Relief: Simple Practices to Calm Your Mind & Heal Your Chronic Pain (Whole Body Healing) (disclosure: that’s an affiliate link to Amazon – costs you nothing extra, adds a few pennies to my bank account).  This excerpt includes instructions for a special practice sequence that might help anyone coping with chronic pain. Also be sure to check out the special bonus guided meditations at the end of the post!

CAUTION: As always, talk to your doctor before starting any new exercise regimen.

Lisa’s Story: Finding Hope Through Yoga

Lisa’s achey fatigue was both mysterious and maddening. When it first showed up during the winter holidays, she thought it was just the flu combined with exhaustion from overdoing things. But as the holidays passed and her fatigue didn’t, her family became alarmed and encouraged her to see a doctor. Her general physician couldn’t give her a definite diagnosis and referred her to a specialist.

The specialist gave her lots of tests but also couldn’t tell Lisa for sure what was causing her exhaustion. Eventually Lisa was diagnosed with chronic fatigue syndrome. By this time, she had taken an extended sick leave from work and was wondering if she would ever be able to return.

Lisa’s physician gave her two prescriptions: an anti-inflammatory drug and an antidepressant. What she wasn’t given was an explanation for her symptoms, or any answers about when or even whether she would recover.

To Lisa, the lack of medical understanding meant lack of hope. Her growing sense of hopelessness was accompanied by greater fatigue. Some days she was so tired, she crawled back into bed less than an hour after waking. The worst part was that even though she was almost always exhausted, she had trouble sleeping. This left her plenty of time alone with her worries and frustrations. She described it as a “wide-awake nightmare.”

Without a clear path for recovery, Lisa needed some way to feel like she was taking care of herself. She wanted to be able to do something every day that felt like an active step toward improving her energy and mood. Lisa didn’t have the strength for exercise, but she found great solace in restorative yoga. It was something she could do every day, knowing that it made her feel better both physically and emotionally.

Lisa kept her yoga mat and props out so that there would be no barrier to practicing. She took great care in choosing inspirational music to play while she practiced, knowing that her favorite songs would lift her spirits. She took seriously the idea that focusing on gratitude, joy, connection, and courage could change the state of her body. She chose one meditation each day to practice in her final restorative pose, imagining the thoughts and sensations of each meditation restoring her strength and well-being.

Lisa thought of her restorative yoga practice as her third daily prescription. It became the one part of her self-care program that consistently made her feel optimistic about her future.

Many types of pain and illness are physically and emotionally overwhelming, especially when they pull you out of your normal life and put you into the role of patient. When pain or illness is this overwhelming, even a few minutes of focusing on health can restore hope and inspire courage in the journey of healing. Whenever you find yourself lowest in spirit, you can always turn to yoga to affirm the part of you that is healthy and whole, despite pain or illness.

A Simple Restorative Yoga Practice: Supported Inversion

Benefits: By gently bringing the legs above the heart, this pose improves circulation and has a healing effect on many systems of the body, including the nervous system, the lymphatic system, and cardiovascular system. It can be done no matter how little energy you have, and can help make “rest” more restful and less stressful.

Props needed:

• A wall, chair, or sofa.
• Optional: a small rolled towel or blanket to support your neck and head
• Optional: an eye pillow or cloth to drape over your eyes.

Instructions:  [Sherrie's Note: there are three parts to this practice -- the physical asana, breathing, and the meditation. Read through the entire description at least twice before attempting. You might also want to consider tape-recording these instructions and playing them back as you go, or having a friend or loved one read through them as you move through the asana, at least the first time you try it.]

1. Find yourself seated on the floor near the wall or your chair, with one side of your body facing the wall or chair.
2. If you are using extra support for your head and neck, place it about one arm’s length away from the wall or chair, where your head will rest.
3. Start to lean back on your arms as you raise your legs onto the support of the wall or chair.
4. Let your hips turn as you do so, until you find yourself lying comfortably on your back, with your legs resting on the wall or chair.
5. If you are at the wall, make sure that you do not feel a strain behind the knees, in the back of your legs and hips, or in your lower back. If you do, try the pose with hips further away from the wall, to reduce pressure on the legs and back. If you continue to feel any strain in the wall version, you may find the bent-leg version using a chair or sofa much more comfortable.
6. Let yourself relax into the support of the pose.

Breathing: Once you are settled in the pose, bring your hands to rest on your belly. Feel the belly rise and fall as you breathe.

Meditation: This pose is in invitation to drop your usual worries and burdens. As you inhale, say silently in your mind, “Let,” and as you exhale, “go.” Yoga is about feeling safe and supported, in both your body and in all areas of your life. You can also repeat silently in your mind, “I am safe” or “I am supported.” If there are other words, images, or memories that make you feel safe and supported — such as loved ones, a favorite place, or a prayer — bring them to mind.

Bonus For Tramadol Diaries Readers! Meditations Just For Chronic Pain Thrivers

In addition to the awesome meditation/yoga asana practice Kelly shares above, she’s offering something special just for Tramadol Diaries readers. At Kelly’s website, Yoga For Pain Relief, you can also download or stream a guided meditation that will guide you through practices of breath awareness, body gratitude, and listening to your body. There’s one for befriending your body, and another for listening to your body (both links are to MP3 files).

I’d like to thank Kelly both for writing such an amazing resource for those of us living with chronic pain, and for sharing her words of wisdom with Tramadol Diaries and its readers. I’ve learned a lot, and I hope you have, too. Kelly has an open invitation to stop back by anytime she likes!

Regular Tramadol Diaries reader Kelly McGonigal contacted me this week with some amazing, awesome news: her book, Yoga for Pain Relief: Simple Practices to Calm Your Mind & Heal Your Chronic Pain (New Harbinger, Dec 2009) is now in stock at Amazon! (Yep, that’s an affiliate link. So is the one at the bottom of the post.)

Even better? Kelly’s going to do a virtual book tour to promote Yoga for Pain Relief and one of her stops? Right here!  UPDATE: Check out Kelly’s guest post at the Diaries right here!

That’s right– Kelly will be the guest blogger here at The Tramadol Diaries very, very soon — date to be announced just as soon as we pin that down. I’ve already gotten a sneak peek at what she’s got in mind, and it’s good stuff — practical, helpful, and very, very cool.

In the meantime, I encourage everyone to get a copy of Kelly’s book. Just as much as tramadol has, yoga has saved my life in the face of chronic pain. From specific postures that relieve specific pains, to the mental shift that removes the suffering element from the perception of pain, yoga’s been an important part of my treatment plan.

Why should you listen to Kelly? Well, simply put: she knows whereof she writes. Kelly is a former chronic pain sufferer herself (that’s right — I wrote “former”! Aren’t you already intrigued?), and she’s not only a Stanford psychology instructor but also a prominent yoga teacher as well.

Personally, I can’t wait to get my copy of Kelly’s book and put her suggestions into practice.

OH — and if you’re reading this blog because someone you know has chronic pain? This would make a great Christmas present. I’m just sayin’ …

Congratulations to Kelly McGonigal, The Tramadol Diaries’ first published reader/author! May you enjoy every success.

Crocs are, without doubt, my favorite shoes when my feet ache. OK, pretty much anytime, really, but especially when my feet ache.

From now until December 18th, you can get 5% off your entire purchase. Here’s the affiliate link so you can help me keep my poor feet in Crocs, too: Exclusive 5% OFF Stackable coupon! This coupon can be used on ANY purchase between now and Dec. 18th. Simply enter N9DWZLKY3ISA.

Personally, I’m jonesing for a hot pink pair with a fur lining. You know, in case someone wants to buy me a Christmanukwanzyule gift a wee bit early.

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!

Astute readers who visit The Tramadol Diaries (as opposed to keeping up with it via a feed reader, that is) will perhaps have noticed a new badge in the sidebar as of the date of this post.

This badge is about thinking big. And about The Think Big Manifesto, a new book by renowned author Michael Port with Mina Samuels (that’s not an affiliate link, which may tell you something about how I view this book).

While I’m still working my way through it, I can already tell this is “one of those books.”

What caught my eye about this title, of course, was the similarity between it and my oft-repeated mantra — the one my coaching clients are probably sick of hearing from me! — which is: “Dream Big.”  I hardly ever see this philosophy repeated in modern self-improvement or business development contexts. It seems everybody’s into “being reasonable” and “thinking small” these days.

Understandable though this may be, I think it’s completely wrong-headed. It’s precisely now, in times of strife and chaos, that we need to think HUGE.

So, I’ve bought extra copies on my own dime and I’m giving away two of them — one here, at The Tramadol Diaries, and one at my other site, The Inspired Solo. How can you win one?

Simple — in fact, it’s as easy as 1-2-3:

1. Go to my contact form on this blog.
2. Fill it out and in the comments section, write about your “BIG DREAM” (or “BIG THOUGHT”). It doesn’t have to be related to chronic pain necessarily. Also, let me know whether it’s OK if I share your big dream anonymously with other TTD readers in a future post on this blog. (Of course, you can just enter the contest without having your dream or thought published, simply by stating so.)
3. Click send.

That’s all you have to do. One week from today, at approximately 8 PM Eastern, I’ll use a randomizer to draw one entry and that lucky person will get an absolutely free copy of Michael Port’s The Think Big Manifesto.

You can also enter over at The Inspired Solo, but only one book per person will be awarded. One entry per person per blog: I want your best and biggest thoughts and dreams.

Questions? Use the comments.