Tag Archives: Fibromyalgia

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.
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*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.

Carved stone Buddha sitting in meditation

How Meditation Relieves Chronic Pain

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

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

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

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

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

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

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

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

The Mechanism Behind Mindfulness Meditation’s Impact on Chronic Pain

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

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

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

The Functions of the Pain Matrix

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

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

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

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

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

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

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

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

Want to Know More?

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

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

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

Photo Credit: kattebelletje via photopin cc

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

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

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

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

Six Secrets of the Empowered Chronic Pain Patient

Image of an empty blue wheelchair in a room

Empowered patients.

Seems everyone’s talking about this phrase lately. Heck, even CNN has a whole section devoted to the concept.

But what does it mean? And who are those empowered patients? Most importantly, what secrets do they know that you don’t? How can you use those secrets to improve your own pain management plan and quality of life?

What Does “Empowered Patient” Mean?

It might be easier to start with defining the opposite of “empowered patient” — what I’ll call the disenfranchised patient.

This is someone whose state of health and well-being have been completely handed over to the responsibility of others. She’s thoroughly dependent on what the doctor says. She doesn’t ask questions. She doesn’t understand her own condition or what her options are.

Like a kindergartener, she simply follows the instructions of the authority figure who tells her what to do — usually a doctor, sometimes a well-meaning friend or family member, or even a specific website.

Compare that patient to the empowered patient. Here’s someone who treats her medical care as a team task — and she’s the captain of that team. She listens to the advice she’s given but she makes her own decisions about her health care and pain management plan.

Most importantly, she’s a fully invested and active partner in her own well-being.

The Seven Secrets of the Empowered Chronic Pain Patient

What do these empowered patients have to teach the rest of us?

I’ve done a lot of research on the subject, spoken with many patients who fit that description, and come up with a list of six “secrets” that they understand completely — secrets that aren’t common knowledge, but that can turn anyone into a truly empowered patient.

1. Do Your Own Research Into Your Chronic Pain Condition

The empowered chronic pain patient knows that she’s just as capable of understanding her condition and keeping on top of recent developments — maybe even more so — as her medical team. After all, her doctors have lots of patients with many different conditions; the patient has one (or perhaps a few) conditions to keep track of.  She doesn’t abdicate the responsibility for maintaining that information to her doctor.

However, we all know too well that there’s a real problem with much of the health information available on the web — much of it’s patently wrong, some of it’s even dangerous, and it’s really tough for the lay person to figure out which sources are trustworthy. How can you tell the difference between a reliable site and one that’s better ignored?

Start with the .gov and .edu sites. These government and university research sites are generally considered by most health care experts to be the most reliable. For the government sites, they’re also typically written at a level that’s easier to understand for the lay person, because the audience of those sites is generally the patient herself.

Once you have a basic understanding of the parameters of your condition, you can expand your knowledge by searching for other sites dedicated to your condition. An excellent resource is WebMD, which has several condition-specific centers on its site where other patients share tips, resources, and new information. (I’m a member of the Fibromyalgia Exchange, one of those centers, and I can personally attest that it’s a terrific group, providing support as well as information.)

Another tip: set up Google Alerts including your condition’s name to deliver news about your illness straight to your inbox. This is an excellent way to stay up to date with recent developments.

2.  Demand — And Give — Respect to Your Pain Management Team Members

Especially for conditions like ME/CFS and fibromyalgia, which are plagued by a small but vocal minority of medical professionals who doubt the disease’s very existence, it can be difficult for chronic pain patients to foster solid, helpful relationships with the doctors they see regularly.

For many of us raised to accept a doctor’s words unquestioningly, it can be difficult to insist on being treated with respect.

The bottom line, though, is this: if your doctor doubts your illness exists, or thinks it’s “all in your head,” how can he or she treat you properly at all? You’re just wasting his or her time, as well as yours. Find another doctor, one who’s better equipped to treat your condition.

Insisting on respect doesn’t mean treating the physician poorly, however. Just as with all our relationships in this world, the best doctor/patient relationships are fostered on mutual respect.

You can read further tips on developing a better relationship with your treating physicians here.

3.  Prepare for Visits to Your Doctor(s)

We’re all guilty of it at some point or another: mumbling our way through a doctor’s visit, then realizing when you get back in your car that you forgot to ask the doctor about eight important questions and tell her about two new symptoms.

The culprit here is our failure to prepare for each and every visit as if it were a crucial business meeting. You wouldn’t go into a meeting with your boss for your annual review unprepared, would you?

Similarly, you should take the time before each impending visit to plan exactly what you want to get out of that visit.

Specific suggestions:

  • Keep a list of questions. Start this written list as soon as the last visit is over, and add to it periodically. Before your visit, review that list and select the most important issues to discuss.
  • Bring a tape recorder or a friend. It’s all too easy to forget every single word that’s exchanged between you and your doctor when you’re focused on trying to participate in the conversation. Instead of delaying things and interrupting the flow of conversation with written notes, consider taking a tape recorder or a friend into your appointment. Turn on the recorder (ask permission first!) or tell the friend to take notes, then you can focus on communicating with your physician.
  • Bring a summarized version of your pain log. (See secret #5 for more information on this.) Being able to show your physician the ups and downs of your pain, along with any patterns you’ve been able to discern can greatly improve her ability to make the correct adjustments to your pain management plan.
  • Take printouts of research or new treatments you want to ask about. Doctors are only human, and it’s easy for them to get distracted or not pay enough attention (or just not understand) what we’re saying when we ask about new research or developments into our conditions. During your periodic research (see secret #1, above), collect printouts of those points you’d like to ask your doctor more about, especially if it concerns a new treatment protocol. If she doesn’t have time to review it fully during your visit, you can leave the printout with her and get back in touch later.

4.  Kill The Doorknob Moment Dead

There’s one point that comes in almost every doctor’s visit when most doctors say the patient’s goals go way off track. It’s also the moment that’s responsible, to a large degree, for the backlog of patients in the waiting room. It’s so common that doctors even have their own name for it: the doorknob moment.

You’ve experienced this yourself, undoubtedly: the visit’s almost over, the doctor’s given you marching orders, her hand is on the doorknob to open the door and leave, and you say “Oh, by the way, doctor, there’s this thing I wanted to ask you about …”

And almost invariably, that little thing that the patient almost forgot to ask? Is really the most important thing she could ask. It’s what’s been bugging her most. It may even be why she made a special appointment.

Keeping and bringing your list of questions to the visit will go a long way to killing this moment, but the empowered patient takes it a step further. She prioritizes her list and asks those questions right up front. This sets the tone and agenda for the visit, and gets the doctor’s mindframe where it needs to be (“OK, she’s concerned about a, b, and c, and a’s the most important thing for me to focus on right now…”).

Simply put, you’ll get better care by killing the doorknob moment dead.

5.  Keep a Pain Log

Arguably the greatest tool in your arsenal against chronic pain, the pain log is simply any collection of data that you maintain on an ongoing basis about the key aspects of your condition. Empowered patients use the pain log to help their doctors pinpoint potential patters in their pain experience. (Wow, that was a lot of alliteration for one sentence.)

At its most basic, a pain log would simply track pain level and quality over time. For even more control over your treatment options, however, consider including notes on other aspects of your life that can impact your pain: sleep, diet, exercise, mood, stress level, etc.

The pain log can be “digital” or “analog.”  I formerly used a moleskine, but have moved to a text document on my computer, perpetualy docked to my desktop. When I’m ready for a doctor’s visit, I simply pull it up and print out the changes since the last visit.

There’s also a new site called Relief InSite that appears to be a web-based version of the pain log. It also allows your doctor to log in and view your notes, which has a whole host of potential benefits. (NB: If that sounds like something you’d be interested in, please give it a try and then drop me a note here or on Twitter to let me know what you think so I can write about this site in more detail later, OK?)

Whatever format you choose, the two main components of a successful pain log are:

  1. Keeping it consistently over a period of time; and
  2. Being completely, brutally honest in it.

6.  Trust Your Instincts

Finally, the single most important secret that an empowered patient knows is to pay attention to that little nagging voice inside. Accounts of women who insisted something was wrong, only to find out from shocked ER staff later that they were having heart attacks, are all too common, unfortunately.

As long as you haven’t been diagnosed as a hypochondriac, your intuition can be a powerful ally in getting the right diagnosis. Somehow, our bodies know — and tell us, through often-subtle physiological clues  — when something’s seriously wrong.

It’s important not to get carried away, of course — headaches are usually not indicative of brain tumors, but stressing about it too much can wreak serious havoc on your health — but if you really feel something’s wrong, don’t settle for a dismissal. Get second opinions, insist on tests, and above all, try to stay calm.

Finally, if you feel you’re not able to be your own advocate, then find an extroverted friend or family member who’s willing to be your advocate during visits that are likely to be contentious.

Empowerment Is Within Your Control

By learning and putting into practice these six secrets of the empowered chronic pain patient, you can improve both your quality of care, as well as your quality of life.

Above all, remind yourself — out loud, if you need to, and often — that you are priceless, and therefore worthy of the absolute best in medical care.

Put forth the effort to become your own team leader. I guarantee you the results are worthwhile.

Are you an empowered patient? What secrets or tips would you share with other chronic pain patients to get the most out of their health care programs?

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

Image of a Stethoscope Against White Background

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

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

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

Facts and Figures on Health Care Reform

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

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

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

Temporary High-Risk Pool and Pre-existing Conditions

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

Health Care Exchanges

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

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

Overall Cost Restrictions

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

More Information

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

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

Woman in White Meditating Outside

Does Meditation Work to Relieve Chronic Pain?

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

Woman in White Meditating Outside

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

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

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

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

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

The Difference Between Pain and Suffering

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

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

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

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

Suffering is what makes us think:

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

You get the drift.

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

The Impact of Meditation on Suffering

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

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

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

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

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

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

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

“Twebate”*: Alternative Remedies versus Pain Medication for Fibromyalgia

I love Twitter. This post is a good explanation of why.

As many know by now, I spent New Year’s weekend moving from North Myrtle Beach, South Carolina, to Salisbury, North Carolina, with my daughter and her kitten. As I expected, the physical and mental stress of this move triggered a fibromyalgia flare-up, and I thusly tweeted:

My Tweet About Fibro Flare-up

The Tweet That Started the Debate

As they do, my #fibro-tweeps sent me some virtual hugs and support, and this one in particular caught my eye:

@DebDrake's Response

Then @DebDrake kindly shared a link to a list of her recommendations for fibromites from her website.  (Deb’s bio on Twitter reads: “I’m a Naturopath, nutritionist & CNHP. I’ve had fibromyalgia for a decade and I am beating it with nutrition and lifestyle.”)

I don’t know what it was about the situation that prompted me to engage Deb but I did, and below, you’ll find what transpired over the next few days between us. Collectively, these tweets represent an interesting debate about alternative medicine versus pain medication for the treatment of fibromyalgia.

So I asked Deb if she’d mind if I shared the conversation with my readers.  She graciously agreed, although she was concerned that I wouldn’t bash alternative medicine in general or specifically with respect to fibromyalgia. I promised I would (A) give equal time; (B) represent the conversation faithfully; and (C) share my opinion truthfully.

And that’s what I’m about to do.

The Twitter Conversation: @DebDrake and @SherrieSisk on Alternative Treatments vs. Pain Medication for Fibromyalgia

I replied:

@DebDrake Alt therapies didn’t work for me. I’m glad they work for someone but my open-mindedness turned to disbelief after my experience.:)

Deb responded:

@SherrieSisk I’m sorry to hear that. It is true that disease = constitution+environment & the remedy must treat both. No remedy works 4 all

@SherrieSisk Dont give up on nature tho. The body has the ability to heal if you give it the tools. minerals help the most -mostly magnesium

@SherrieSisk Many do just the opposite: give up on meds bc of side effects & not working.That was me-In pain 5yrs going to drs. never helped

I replied:

@debdrake Magnesium did absolutely nothing for me. Tramadol, however, works great. Side FX minimal if taken properly, uptitrated slowly

@debdrake Not anti-anything that works for the individual. Just sick and tired of #fibro patients talked out of trying medication b/c of…

@debdrake … baseless fears or bad doctor advice.

Deb next offered the following thoughts:

@SherrieSisk Magnesium by itself helped but not enough. It does pretty good when mixed w CoQ10 and malic acid.

@SherrieSisk But still, fighting fibromyalgia requires a combination of things to do. It was caused by any one thing. A change in lifestyle.

@SherrieSisk Natural remedies dont work the same way medications do. They help build the body up rather than undo a symptom. Symptoms=alarm.

@SherrieSisk So sometimes meds are good. They turn off the alarm & stop pain. but now something must change or damage is still being done.

@SherrieSisk I guess I just think that everything, even herbs, should only be temporary fixes. Herbs for example help the body rebuild.

@SherrieSisk There are a few things we need ongoing since food is deplete. A good multi, omega3, antioxidants, minerals, probiotics, enzymes

My response:

@debdrake It’d be great if that worked for everyone. You can read more abt my 10yr exprnc w/ #fibro at my site – but briefly …

@debdrake … I’ve tried many nutrtl supps – some made slight difference, most made none (incl CoQ10, malic acid and Mg). I just can’t …

@debdrake … agree that meds are not best treatment option, ever, for anyone. There is no one-size-fits all solution, until there’s a cure

@debdrake Basically: I’m a big believer in better living thru chemistry, until they come up with a cure, and strongly believe#fibro ptnts..

@debdrake … shouldn’t feel guilty for trying/relying on them, if they work. Yet that’s the msg we’re constantly bombarded with.

Deb’s response:

@SherrieSisk I hope I dont come across as anti meds. I dont talk about meds. Im not an MD. I’m an ND so only talk about natural alternatives

@SherrieSisk Im def not trying 2 make any1 feel guilty about anything. U have to feel good about what u are doing 4 it to help & not harm u.

@SherrieSisk Fibromyalgia is very much tied in to our emotions and feelings. Choosing a treatment should not be based on fear.

@SherrieSisk I know that many don’t want to use chemicals and so are looking for how to reduce symptoms without meds. I am here for them.

@SherrieSisk Ur right about just trying to use one answer for fibro. It wont work. Like I mentioned bf, must be an individualized program.

@SherrieSisk If a person comes to me and says they live a hi stress life, eat fast food everyday, wont sleep at night, etc, & then say that…

@SherrieSisk They want rid of symptoms but don’t want to make any changes. just a supplement 2 fix it. It’s not possible. I can’t help them.

@SherrieSisk If you are happy with your treatment plan and have no side effects or fear of long term issues, then don’t change it.

Then she said something nice about my writing. 😉  I thanked her, and said:

@debdrake I understand completely. I’m not “PRO”-meds – except when they work and are taken properly. I’m PRO-anything that helps.

@debdrake It’s just that for me, I don’t see the proof that alt remedies really work as well as meds, & there’s a TON of bias against meds

@debdrake … that ticks me off, frankly. No #fibro ptnt should B scared away from ANYTHING that works. Alt remedies, meds, yoga, ANYTHING.

My Position on Alternative Remedies and Prescription Pain Medication for Fibromyalgia

Let’s clarify what we’re talking about when we talk about “alternative remedies” for fibromyalgia.

As I use the phrase, I’m referring to nutritional supplements, acupuncture, acupressure, Chinese medicine, massage therapy, Ayurveda … pretty much the world of treatment outside prescription pain medication, surgery, and exercise/physical therapy-based treatments.

I realize some might disagree with me that yoga isn’t really an alternative therapy, but I consider any movement-based program to be in the same ballpark as any kind of exercise, including walking.

I wrote about nutritional supplements, and described my experience with them, on this blog previously. I realize now that I sort of shied away from my true feelings about natural or alternative remedies in that post, and I apologize for that. But there was a reason for my reserved approach, and it’s echoed in my statements to Deb above: I don’t want anyone with fibromyalgia to be persuaded not to try something that might help them.

See, I agree with Deb in a few respects here. Until we have a cure, there will never be one single treatment that works for everyone and every symptom.

One place where I part company with her is in the why: Deb thinks no one thing causes fibromyalgia and that’s why no one treatment will work. I think it’s entirely possible that one thing does cause fibro, although it possibly depends on a more complex mechanism or series of events to really get going.

The point: We don’t know what causes fibro. We don’t know what the cure is yet.

And with respect to alternative remedies, by and large, we don’t know whether they “work” to either cure, lessen, remedy, heal, or alleviate fibro. We have some evidence, mostly anecdotal, that certain treatments have a beneficial effect more often than others. We have very little empirical evidence, though, especially with respect to nutritional supplements.

Here’s my beef with the whole alternative field: I’ve read a lot of those books detailing the supplementation regimens recommended for fibro, and the regiments simply aren’t practical. I’ve tried a lot of those regimens — the expense coupled with the not-insignificant hassle of taking handfuls of pills every day at different times means, for me, that in order to be worth that hassle, that regimen better produce some impressive results pretty darn quickly.

They never have. For me. Others say that their mileage varied — they believe the regimens worked and they feel a lot better. And that’s great for them.

Let me make this clear, once more: I support wholeheartedly any fibromite’s treatment regimen if it works for you and is safe. Heck: even if it isn’t safe, if you’re fully informed and make a deliberate decision to try it anyway, knowing the risks, then I support that, too, as long as it poses no risk to anyone else.

Where I get irritated is when folks make claims that fibro can be cured by natural means — or frankly, by any means. It can’t. Not yet. I also get irritated when medication is presented as something unnatural — in the sense that it’s bad, or wrong. It sends the message that anyone who chooses medication is somehow weak, or doing the wrong thing, or harming herself.

It’s just not true. I resent it, it gets my hackles up, and it’s dangerous, to boot.

Medication wasn’t something I chose lightly. I looked for more conservative measures for four entire years before I finally agreed to give prescription pain medication a try.

But when I did — when I found what worked for me (tramadol plus acetaminophen) — the change in my quality of life was striking, immediate, and long-lasting. I’ve been on this cocktail for six years now, and have increased my dose only once (three years ago).

Far from being addicted to it, I’m indebted to it, but I take it in order to live my life, not to get high or to avoid withdrawal. I take it, in short, in order to function. It works for me, plus any side effects are minimal and can be managed completely by simply following the instructions for taking it.

Basically, what I’m saying is this: don’t be swayed away from any possible treatment — including nutritional supplements, and – yes – including prescription pain medication — by questionable value judgments placed on the treatment by others. Don’t reject prescription pain meds, when nothing else works, just because people tell you that they’re somehow wrong or objectionable, based on some faulty science or a personal agenda. By the same token, don’t go running to your doctor for tramadol just because I’m saying it worked for me.

And with respect to alternative remedies, I’d love to see some harder science on their efficacy. To my knowledge, only acupuncture has any studies supporting its usage in fibro treatment; it would be awesome to have more options for all of us. All I can do is tell you what worked — and what didn’t — for me:

  • Tramadol, gentle yoga, minor diet adjustments: yes.
  • Supplements, acupuncture, chiropractic, herbs, and just about everything else, including massage (damn it, ’cause I do love massages!): not really, or not in the least.

And, as always, your mileage may definitely vary.




* – (Twebate=Twitter debate. And I promise, that’s the last time I’ll ever coin a “tw”-starting word to describe something on Twitter.)

Milking It: Is Vitamin D the Answer to Fibro Fog?

A recent study suggests that Vitamin D consumption during physical development has an effect on brain power as one ages, leading to speculation that appropriate supplementation in later years can help us retain or even improve mental acuity.

Fibro fog, anyone?

According to several studies (see References section, below, for cites), Vitamin D may, in addition to fighting cancer and keeping our skeletons strong, help improve cognitive abilities. That’s an intriguing finding for those of us fighting fibro fog, the occasional decline in aspects of cognition that can accompany fibromyalgia.

Is it possible to alleviate the memory lapses, the word-searching, and the sudden inability to do simple math with just a daily pill? Well — probably not. But even so, Vitamin D is a necessary substance for good health. It’s unique among vitamins in that our own bodies can manufacture it out of sunlight. Fifteen minutes of sun exposure without sunscreen three times a week — most experts seem to agree that this is sufficient to allow our bodies to do their thing.

However, our ability to make this vitamin decreases as we age, so it’s also important to make sure we eat  foods rich in vitamin D. Some good suggestions, in addition to the usual milk and milk products, include salmon, cod, and shrimp. Eggs are also a good choice.

A good multivitamin with vitamin D isn’t a bad idea, but if you want to supplement with 1,000 I.U. or more vitamin D pill, check with your physician first; vitamin D can be toxic in large amounts. 1,000 IU should not produce toxicity by itself, but all sources should be considered.

References

  • “Effects of vitamin D supplementation on symptoms of depression in overweight and obese subjects: randomized double blind trial”; Journal of Internal Medicine; R. Jorde, M. Sneve, Y. Figenschau, J. Svartberg J. and K. Waterloo; December 2008 and “Vitamin D deficiency is associated with low mood and worse cognitive performance in older adults”; American Journal of Geriatric Psychiatry;  C. H.  Wilkins, Y. I. Sheline, C. M. Roe, S. J. Birge and J. C. Morris; December 2006, both quoted in “Mental Health Benefits of Vitamin D” — Michele Turcotte: LiveStrong.com (accessed Nov. 7, 2009)
  • Vitamin D: Vitamin Dependency, Deficiency and Toxicity” – Merck.com (accessed Nov. 7, 2009)

How to Be a Good Friend to Someone With Chronic Pain

Today’s post is aimed at a slightly different reader — not the fibromyalgia sufferer or any other chronic pain patient for that matter, but the friends of people with chronic pain.

The Gift of Friendship — The Challenge of Chronic Pain

I know it’s not easy being the friend of someone who’s in pain most or all of the time. You probably have a lot of mixed emotions about your friend’s new reality. You might be concerned for your friend’s prognosis. You may miss doing fun things together, or even resent how much of your friend’s time and attention her condition now consumes. You may even have some doubts about whether her health is really “that bad” — especially if she “doesn’t look sick.”

But you’re also in a wonderful position, in a way. You’ve got some objectivity, of course — the pain isn’t happening to you, so you can be an incredible source of guidance and feedback when it comes to trying new therapies or making adjustments to daily life. You’re also motivated by friendship and that means you’ve got compassion for your friend’s new challenges. That compassion is something all of us need from time to time, no one more so than a chronic pain sufferer.

Straight From the Horse’s Mouth: How You Can Be a Good Friend to a Chronic Pain Sufferer

I asked some of my “fibro-friends” on Twitter what they thought about this question: “What piece of advice would you give to someone who wanted to be a better friend to someone struggling with chronic pain?” The responses I got were incredibly moving and may help you in your quest to be a better friend.

Just Listen, Even When It’s Hard

First, they said, it would help tremendously if you would just be there for us. Be a shoulder to cry on, listen to us rant and whine on occasion when the pain stops us from doing what we really long to do. It’s hard to listen to someone you care about who’s in pain, we know, but your presence really does help. We need people to listen to us — to hear our stories — and to hear us with compassion. That’s something you can do better than anyone else.

Send Us Good Information, But Beware of Claims of “Cures”

Second, we welcome your interest in our condition. Please do keep emailing us news clippings that you find about our condition. But we do have one request: ignore the ones that say we can be “cured” with one simple supplement, or readily available substance.

For most of us, there is no cure yet, although researchers are constantly at work on these conditions and we’re all hopeful. The most that we can hope for in the immediate future, however, is successful management of our symptoms. So, check out the source of that article you’re thinking of sending. If it’s a press release, you can skip it. If it’s a true news piece, send it on.

Understand What We’re Talking About When We Say “We Hurt”

Third: please understand that our pain is not like the normal, average everyday aches and pains that almost everybody endures as they get older. This stuff is potent pain of the highest magnitude, and it interferes with everyday life.

When a fibromyalgia patient says she hurts or is experiencing a flare, for instance, you can understand what she’s going through by remembering what it feels like to have the flu — not the stuff you call the flu when you’re really just not feeling well and don’t want to go to work, but the honest-to-goodness, kills-people-every-year influenza. Remember those deep-rooted widespread body aches? That’s what a flareup feels like, only it doesn’t go away with Tylenol.

The One Thing You Should Never Say to a Chronic Pain Sufferer

So, while it’s perfectly normal to think “Well, everyone hurts now and then …” — keep that thought to yourself, please.

We know everyone hurts — but not everyone hurts like we hurt, and when you say things like that, it just makes us feel (A) terribly alone and (B) that you don’t believe us, that you think we’re just malingering. Please trust me: we’re not hypochondriacs or malingerers. We hope for nothing more out of life than one more good day, one pain-free day, and, please God, a cure for what ails us.

Grace Us With Your Presence

Finally, please don’t forget about us. It’s going to be hard, we know. Especially when we’ve both lived with this condition for awhile, and you start to realize that there’s really not much you can do to make us feel better, and there’s not much we can do to rejoin life as we used to know it.

You’re going to start telling yourself, “Well, there’s nothing I can do to help. And I know she doesn’t want to or can’t go do __________ (whatever you’ve got planned for the day).” Then, the next thing you know, you’re not calling or emailing, and we haven’t seen each other in ages.

Please resist that temptation. Even if you know we can’t join you, it still feels good to be invited from time to time.

And even though, yes, you’re right, there’s not much you can do to make us feel better, there is one thing you can do — and that’s grace us with your friendship and your presence. Call and see if you can just drop by for a chat. Tell us about fun things you’ve been doing — even if we seem envious, we’re really happy that we can at least live vicariously through you! Keep us in touch with what’s going on out there in your world, because we do care about you, even though it seems sometimes as if all we can think about is our chronic pain condition.

We need friendship, just as much as we need good pain relief and a caring, competent doctor. We hope that our pain doesn’t scare you off, because your friendship does mean so much to us. Take us as we are, but please don’t forget that underneath all the new stuff that any serious health condition brings, it’s still us in there — the same friend who’s loved you and relished your love for years.

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