Category Archives: Fibromyalgia

Fibromyalgia Symptoms Worse? Check Your Scales

Image of apple and hamburger on scales

Choose wisely . . .

A recent article, “Obesity Linked to Worse Fibromyalgia Symptoms,” caught my attention.

The article covers the findings of Mayo Clinic researcher Dr. Terry Oh, who discovered a link between obesity and increased severity of fibromyalgia symptoms.

“We see an association between body mass index with symptom severity and quality of life in patients with fibromyalgia,” says study author Terry Oh, M.D., of Mayo Clinic’s Department of Physical Medicine & Rehabilitation. “This was the first study to look at distinct groups of obese patients and determine how weight correlates with levels of symptoms and quality of life.”

Is anyone really surprised by this?

I mean, it might not be “duh”-worthy, but I can’t ignore direct experience.

See, excess weight has plagued me almost all of my adult life. As I struggled post-diagnosis to lose weight, my fibro symptoms did, in fact, get worse and ease off as the numbers on the scale rose and fell, respectively.

And I’m not alone, I know. According to the CDC, which lumps fibromyalgia into arthritis-related conditions, over 60% of adults in the US who’ve been diagnosed with some form of arthritis (including fibromyalgia among other conditions) are overweight or obese. That’s a lot of potential fibromites who are struggling with their weight and, presumably, the increased pain that comes with excess weight.

Of course, many fibro patients cannot exercise aerobically at the level needed to aid weight loss.

Note: I said “aid” — you cannot lose weight with exercise alone. Which is the good news for fibromyalgia dolls — the thing we can’t do isn’t the biggest part of successful weight management, but the thing we can do — i.e., get our eating under control — is key.

So what are we supposed to do about it, then?

Right: eat fewer calories, with more dense nutrition per calorie.

And yes, I know that’s much easier said than done. Hell, I’ve struggled with my own eating for years … sometimes more successfully than others. Lately, I had a weight gain that’s somewhat mysterious to me. I don’t think I ate that much … but yet, the scales don’t lie. To me, that conclusively establishes that it’s far too easy to eat mindlessly, instead of mindfully.

But now I’ve got even more reason to get my own eating under control: if there’s a chance that losing weight — even a little — will ease up these symptoms and the increased pain I’ve experienced since the weight gain?

I’m there.

Who’s with me?

 

Resource Helps ME/CFS & Fibromyalgia Patients Find Good Doctors

I’ve just updated the resources pages for Fibromyalgia and ME/CFS with a new entry: the Co-Cure Good Doctor Lists.

This page lists doctors suggested by other patients with fibro and ME/CFS (or chronic fatigue syndrome, as some still call it), by U.S. state and not-a-few other countries. The theory is similar to Angie’s List, the site that lists service providers with customer-written reviews — the doctor who is referred by other patients is more likely to actually be a good choice for women with these conditions.

That said, some of the doctors on the lists were self-referred — in other words, they submitted their own names with the affirmation that they were “fibro-friendly” or “ME/CFS-friendly” and had significant experience treating patients with these illnesses. All self-referred doctors have a note to that effect beside their entries.

There’s a reason I found and decided to add this resource to Trauma Dolls, and it’s not a pretty story. But it’s a story that needs to be shared. Share it I will — tomorrow. (It’s taken me several days to process what happened sufficiently to write about it cogently.)

‘Til then, take a look at the Co-Cure Good Doc list, and see if your primary care provider is listed — or if, perhaps, there’s a better choice for you out there in your community.

A Doll’s Story: Interview with Melanie Notkin of SavvyAuntie.com

Every Doll Has a Story . . .

It’s my fervent belief that facts and figures don’t move people to action — stories do.

And every Trauma Doll has a story. Meet one of your sister Dolls in our new feature, “A Doll’s Story,” which we’ll post every so often. Each Story will show you yet one more reason not to lose hope over coping with chronic pain.

Today’s Story belongs to a real “aunt”-trepreneur, SavvyAuntie.com’s Melanie Notkin!

Image of Melanie Notkin of SavvyAuntie.com

Meet the Savvy Auntie Doll, Melanie Notkin

Interview with Melanie Notkin

Melanie, I cannot thank you enough for doing this. You and I have been following each other on Twitter since 2009, I think, and I’ve loved observing how you built up SavvyAuntie.com into such a successful lifestyle brand and website. I was astounded when you told me recently you accomplished all this while dealing with chronic pain yourself! Tell us a little bit about your history with fibromyalgia and myofascial pain.

It’s my pleasure to speak with you about my chronic pain and how I’ve refocused my life.

I don’t remember a time when I wasn’t in some sort of pain, even in mild forms. When I was little, I suffered from what they called ‘growing pains’ in my legs. When I got to the tween years, I began complaining about pain in my upper back and neck. My mother’s rheumatologist poo poo’ed it, saying I was probably carrying my backpack incorrectly… but I knew it was something more. But at age 14, what are you going to say? At 16, as growing pains subsided, the pain in my neck grew more intense, but I learned to live with it and take ibuprofen on the bad days.

When I was in my mid-twenties, the pain became unbearable at times. I went to see a sports MD thinking he might be able to help. After about 5 minutes of massage, he pressed on various place on my body which I realized had focused pain. He suggested I might have fibromyalgia and I quickly bought every book on the subject. (This was in the mid 1990s, before the Internet was a natural go-to place for research!)  I had 11 of the 18 touch-points associated with fibromyalgia.

While the pain did not go away, the relief that I was part of a community helped. My rheumatologist confirmed I have the syndrom as I also have a (mild) case of rheumatoid arthritis and therefore it’s not unlikely as the two often go together.

In my mid thirties, I went to see a physiologist who said that the intense pain on my left side was myofascial pain (because I had the pain without touch). Around that time, I had complained to my former internist about my pain and described it as a migraine in my back. (He wasn’t a fibro-believer). He prescribed migraine meds which I still take on bad days. They are a gift.

How long did it take you to get a diagnosis, after the symptoms first began showing up?

Twenty years.

What’s your current treatment program like? Can you describe what you do regularly to keep chronic pain at a minimum and how you stop it from stopping you?

I take a migraine med called Fioricet (please don’t take anything without your doctor’s approval!) on intense days as soon as I feel the pain coming on. Exercise (20 minutes on a stationary bike and 20 minutes of weight training) helps too. I’ll also treat myself to a 10 minute massage at the nail salon (very common here in New York City) or on those really bad days where even Fioricit won’t help, an hour massage.

April and October seem to be my worst months, so I take ibuprofen on my ‘every day pain’ days.

Since I’ve had pain my whole life, I can’t let it stop me. Now my pain may not be as bad as that of some of your readers, or it may be worse than others. But for me, focusing on pain feels like defeat. What a downer! So I focus on success instead. In fact, I rarely talk about pain and have since thrown out all those books I bought on fibromyalgia. I just don’t like the painful energy in my home.

One of my biggest pet peeves is the way a lot of us with chronic pain — particularly those of us with chronic fatigue and fibromyalgia — are met with suspicion right out of the gate by so many in the medical profession. Have you ever experienced that? How did you deal with it?

Yes, as I said above, some of my doctors didn’t believe my pain. The first, when I was young, had diagnosed my mother with Lupus, one of the first in Canada. He was a good doctor. I think my young age is what fooled him and I don’t blame him. Besides, it was the 1970s and fibromyalgia was not a known diagnoses.

The second was an internist I had in my 20s and 30s who never believed me when I knew something was wrong, even saying once I has the stomach flu until I insisted he take blood. I was actually very ill (all better now!). So I learned early on to speak up for my body. She’s mute. I’m not.

I like to encourage myself and others to dream big, but a lot of folks with chronic pain don’t see how that’s possible. I understand that response, completely — dealing with chronic pain is often a full time job in and of itself, and it’s exhausting sometimes just trying to stay well and functional. I think sometimes the way we talk to ourselves about our pain can be one of the biggest obstacles we face. Yet I look at what you’ve accomplished and I have to conclude SavvyAuntie.com was a HUGE dream, and there you are, living it every day. What kind of self-talk did you have to change or develop in order to keep yourself on track with this big dream?

Pain will not defeat my dreams. And in fact, focusing on building a business I love has quieted down the pain because I have so much else to focus on.

A lot of women with chronic pain have a very hard time making ends meet financially, and one possible solution is self-employment or entrepreneurship. What advice can you give Trauma Dolls’ readers who are interested in exploring building their own businesses, in spite of their chronic pain?

My chronic pain is manageable. For others, it may not be. So for me, it was never an issue as I’ve had it my entire life and it’s never stopped me. That said, in 2005 I woke up numb on one side of my body and later learned it was a symptom of the onset of Multiple Sclerosis.

I was working in corporate America under a lot of stress and aggravation. Instead of launching a Website that summer, I was in the ER trying to understand why my body was numb.

While my neurologist says that stress has not proven to be the culprit of MS, I knew that one type of stress, “aggravation,” often brought on symptoms and am not surprised that during that time at my job, MS came knocking and said: Ready or not, here I am! (By the way, all of the challenges I have are likely all autoimmune issues and are probably related in some way.)

All this to say that while having one’s own business and investing one’s life’s savings in it is stressful to say that least, I don’t have aggravation. My symptoms for all challenges are lessened because I can control my aggravation levels better than when working with people that don’t offer me the solutions I believe in. Being in control of who I work with and the situations I work under to a greater degree means I can control best what creates pain or weakness – not all the time – but more so.

Bad days happen to us all. I had one yesterday — there was just no way I was getting out of the bed to finish moving out of my old house. What do you do when a bad day hits?

I don’t punish myself for slowing down. I look for ways to focus on things that bring me happiness or calm me (I call or visit my nephew and nieces!). I take something for the pain, go to the gym and/or get a massage. I take a break. I push through. I have no choice.

I hear you’ve written a book — tell us about that?

Yes! Savvy Auntie: The Ultimate Guide for Cool Aunts, Great-Aunts, Godmothers and All Women Who Love Kids (Morrow/HarperCollins) is being released on April 26th!  It’s based on my Savvy Auntie lifestyle brand, the first for the nearly 50 percent of American women who are not moms but love a child in their life!

What’s next for SavvyAuntie.com and Melanie Notkin?

The book is a huge focus for me and the brand right now… as is continuing to build the Savvy Auntourage. There are 40,000 fans on Facebook.com/SavvyAuntie now, growing daily! And mark your calendar! The third annual Auntie’s DayTM is July 24th, 2011!

Last question! Let’s play make believe. You meet a woman who tells you she’s just been diagnosed with a chronic pain condition. She looks depressed, sounds scared, and seems overwhelmed. What one (or two or three) pieces of advice do you share with her, from your perspective having dealt with fibromyalgia and chronic pain for so long?

Our pain is not terminal. Do not let it kill your spirit either. Keep going!

NB: This interview was supposed to be published on March 15th, and sadly that didn’t happen due to a computer hard drive crash (that would be mine — sigh). I’m going ahead & putting this up, even though the event’s over, ’cause you should still totally buy Melanie’s book and donate to Project Ladybug yourself. OK, thanks!

Melanie is asking all those considering ordering her book Savvy Auntie to please pre-order it Tuesday, March 15 on Amazon.com to help her move the book up the rankings there. Send an email to Book@SavvyAuntie.com telling her you’ve pre-ordered the book because Melanie will donate $1 for **every book pre-ordered that day to Project Ladybug, a fund dedicated to enriching the lives of children with life threatening conditions co-founded by former Bravo Real Housewife of New Jersey, Dina Manzo.

(**Up to $1000)

New Diagnostic Criteria for Fibromyalgia

Well, this kind of took me by surprise.

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

Tender Points Versus the New Criteria

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

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

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

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

Potential Impact of New Fibromyalgia Criteria

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

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

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

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

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

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

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

OK, what’s up with this, Canada?

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

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

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

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

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

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

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

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

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

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

The One-Minute TTD Review

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

About the Author

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

Overview of the Book

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

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

The Extended Review

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

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

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

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

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

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

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

An Interview with Sue Ingebretson, Author of FibroWHYalgia

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



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

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

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

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

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

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

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

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

What prompted you to write this book?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Indeed I do.

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 … )

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

Snapshot Image of the Cover of Fibromyalgia Aware MagazineI 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.

Do Nutritional Supplements for Fibromyalgia Really Work?

Update – 12/5/09: the promo code for the Vitamin World site at the end of this post was good for December 2 only, but this one’s good today – Dec. 5th: One day only! $10 off $75 + FREE Shipping at Vitamin World. Use code TAVHOL5 at checkout. Valid 12.05.09

I’ll keep updating this post as long as the VW promotion is going on, so check back if you’re not ready to buy now. Again, that’s an affiliate link which might put a few cents back into the web-hosting account for this site! Gracias.

Many fibromyalgia experts  and texts recommend nutritional supplements as a way to offset or eliminate fibro symptoms. But do those supplements really work?

Following is a rundown of a few of the most-often recommended supplements, as well as my own personal experience with some of them.

CAUTION: Remember that, as with every potential treatment, you should always consult with your physician before trying any of these supplements out. Even so-called natural remedies can interact dangerously with other remedies and medications, so talk to your doctor first.

Malic Acid and Magnesium

Particularly when taken together, experts suggest, malic acid and magnesium can alleviate the more painful fibro symptoms. Malic acid is derived from tart apples, while magnesium is, of course, an essential mineral necessary for more than 300 bodily biochemcial functions.

Among the most important of these functions are muscular function and the creation/processing of ATP in the body. (ATP, briefly, is adenosine triphosphate, and results from the enzyme-catalyzed processing of sugar and fat.) Magnesium activates the process, and malic acid helps the body make ATP more efficiently.

Past research also suggests that magnesium may work to dampen the processing of some types of pain signals in fibromyalgia sufferers.

You can view more information on magnesium at the NIH fact sheet here, and an abstract of one study’s results looking at the combination of malic acid and magnesium can be found here (results: “significant reduction” in pain symptoms in increased dosages in open trial). However, it should be noted that an earlier double-blind phase of that same study showed no appreciable effect on FM patients who took magnesium/malic acid supplements.

Possible side effects:

  • Diarrhea
  • Nausea or diminished appetite
  • Respiratory difficulties
  • Hypotension
  • Adverse interactions with some medications (including osteoporosis drugs, certain hypertension medications, antibiotics, and muscle relaxers)

S-adenosylmethionine (SAMe)

A naturally-occuring chemical compound found in the human body, SAMe plays an important role in several critical functions, including the immune system response and the creation and processing of chemical neurotransmitters such as serotonin and dopamine.

Some research indicates that SAMe might be beneficial for FM patients.  In one double-blind study looking at SAMe’s effects on 17 fibromites (more than half of whom also had been diagnosed with depression), both the number of painful tender points and assessed depression decreased appreciably with SAMe as compared to the placebo group. While intriguing, the relatively small number of subjects in this study warrants caution in evaluating its results.

Other study results conflict with each other. In one slightly larger study (44 subjects), there was appreciable decrease in some symptoms (pain, tiredness) but not others (tender points, mood). Another study delivered SAMe via IV, but found no measurable decrease in tender points.

Possible side effects:

  • Indigestion and other digestive disorders
  • Insomnia
  • More rarely: diarrhea, acid reflux
  • Caution: FM patients who are diagnosed with bipolar disorder should not take SAMe; it may increase the occurrence and severity of manic episodes. SAMe may be contraindicated for those taking antidepressants; consult your doctor first (as you should before taking any new supplement or medication).

5-HTP (5-hydroxytryptophan)

There is some promising research on 5-HTP and fibromyalgia, showing that it can reduce tender points and increase serotonin, the “feel good” neurotransmitter.

There is no fact sheet for 5-HTP at NIH, but you can find good information on it at this site. While it’s found in low levels in some foods (turkey, for one), most will want to choose a supplement form.

Possible Side Effects:

  • Loss of appetite, nausea, and vomiting
  • Diarrhea
  • Pupil dilation
  • Muscular coordination problems
  • Blurred vision
  • Irregular cardiac rhythms
  • Caution: Do not take 5-HTP if you’re currently taking any antidepressant.

Vitamin B12

A few studies with relatively small subject numbers indicate that FM patients may have lower levels of vitamin B12. As B12 is an essential vitamin, it’s certainly worth looking into your intake.

Good dietary sources of B12 are animal products — meats, fish, eggs — and fortified cereals. It’s not usually found in fruits and vegetables. The current RDA for mature men and women ranges from 2.4 to 2.8 micrograms.

You can also take a multivitamin that has B12 in it, or an individual supplement pill for B12 or B Complex (includes B12 as well as B1, B2, B3, and B6).

You can read more information on Vitamin B12 at the NIH website’s fact sheet.

Possible side effects:

  • B12 has a very low risk of toxicity but it can be contraindicated with certain medications. As always, talk to your doctor.

Vitamin D

Some researchers have found a connection between vitamin D deficiency and general musculoskeletal pain. Certainly, vitamin D is generally recommended for overall nutritional health and wellbeing.

The current recommended intake level for vitamin D in the US is 200 I.U. for men and women up to age 50, rising up to 600 I.U. for older patients.  Toxicity has been established at 50,000 I.U.

It’s difficult to get all the Vitamin D you need from foods, but it is present in fortified milk products and certain fatty fish (particularly the skins). You can also increase your body’s own production of the vitamin with sunlight exposure without sunscreen (just a few minutes a day are all that’s required).

Get more info from the NIH Fact Sheet on Vitamin D.

Possible Side Effects:

With too-high intakes of Vitamin D, certain side effects are known:

  • Nausea
  • Vomiting
  • Decreased appetite
  • Constipation
  • High blood levels of calcium may also lead to confusion and irregular heart rhythms

Personal Experience With Supplements for Fibromyalgia

Of these commonly-recommended supplements, I’ve given two-month trials to malic acid and magnesium (taken together); vitamin B12; SAMe; and 5-HTP. I’m currently experimenting with vitamin D.

I experienced no measurable relief with malic acid and magnesium. While on increased levels of B12 (a multivitamin plus an additional supplement, providing a total of 580 mcg, I did notice a slight increase in my energy level, but no decrease in pain symptoms.

SAMe and 5-HTP both produced some interesting results. I believe my pain symptoms leveled off — I had fewer flare-ups, and when I did experience increased pain days, it seemed that my “lows” weren’t quite as low as previously. Also with 5-HTP (but not SAMe), I felt my neck/shoulder tender points were a little diminished in terms of sensitivity.

Of course, in each of these try-outs, I knew what I was taking. My results could be attributable to a placebo effect (although that doesn’t explain why I didn’t experience any benefit with malic acid and magnesium; 10 years ago, when I was first diagnosed, it was the first- and most-often-recommended supplement).

You should never take any one person’s recommendation for a treatment option. Do your own research, talk to your doctor, and if you do want to try one of these supplements, try going in without any expectations.

Special Promo Code for Tramadol Diaries Readers from Vitamin World

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