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A Fibromyalgia Tale of Two Sisters

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I’m often asked about the path that fibromyalgia takes. Does it bring on symptoms like a speeding train, or is it more like a pack mule headed uphill?

That depends.

For some the onset is fast and furious – say, after an accident, traumatic event, toxic exposure, or exposure to medications such as vaccinations and/or antibiotics. For others, it creeps up slowly over time. It may be a combination of the two. Symptoms may have been escalating (yet still vague enough to escape our direct attention), and then they come on with a vengeance after an impactful event.

To demonstrate the path and direction that fibromyalgia can take, the following is an illustration of two sisters. The characterization I’ve used for each is a composite of my own clients, friends, and those in the fibromyalgia community. Each sister is diagnosed with fibromyalgia and chooses to follow her own path of treatments.

The beginning ….

Kathy and Kelly are fraternal twins. Raised in a suburban home on the outskirts of Pittsburgh, they had a typical childhood with no illnesses or injuries that required hospitalization. They had their fair share of episodes of bronchitis and were on and off of antibiotics for much of their teen years.

Their parents both worked full-time and traveled on business. The girls learned to fend for themselves in the kitchen and enjoyed box mix dinners such as noodle casseroles for dinner and baking treats after school. If time was short, they had cereal or toaster pastries for any meal of the day.

They saw their doctor regularly for checkups as well as their dentist.

Life at full tilt

As time speeds forward, Kathy and Kelly end up moving away, marrying, and taking on busy jobs. Kathy lands in Minneapolis and works for a hectic publishing firm in the downtown area. Kelly ends up working as an executive assistant for a high-profile restaurant franchise owner in Charleston.

As sometimes happens, the business of real life takes over and the sisters don’t often see each other and rarely speak on the phone. The years drift by and they each begin to experience more aches and pains than they feel should be “normal.” Without any communication with each other on the subject, they embark on individual healing journeys.

Kathy’s story

Kathy first noticed a swollen feeling in her wrists and hands after a long bout of bronchitis. Her neck felt stiff quite often and while she first put it off as weather-related, she soon realized that something was wrong.

Many doctor visits later, she landed in the office of a general practitioner who says, “I know exactly what this is. You have fibromyalgia. It’s not something that can be fixed or cured. So, I’ll start you off with some muscle relaxers, some sleep medications, and a prescription for a fibromyalgia-specific medication. I hear great things about it. I’ll also refer you to a rheumatologist for further testing.”

Kathy feels devastated. With no idea of what to do, she follows direction and heads to the pharmacy. After her rheumatologist visit, she’s given more tests, more prescriptions to try, and is again sent on her way. She feels there has to be more to it than one revolving door after another.

Over the next 10 years, she experiences increased pain, increased mobility restrictions, and increased frustration. She’s forced to file for disability and leave work when she can no longer sit or stand for very long. Soon after, upon her doctor’s insistence, she has two surgeries — a hysterectomy and a gallbladder removal. She anticipated improvements in pain, fatigue, and digestive problems, but found more of the same instead.

With each procedure and treatment, she finds her health declining. She’s eventually diagnosed with related and overlapping conditions such as GERD/Reflux, migraines, inner ear problems, IBS, diabetes, neuropathy, thyroiditis, and depression.

Her husband has had to take over most of the household and family tasks, frustrating Kathy even further. She spends more and more of her days on the couch or isolated in her bedroom. Some days she feels well enough to attend an event, but only if there’s access for her motorized chair. Many times over, she wonders if the effort of getting out is worth it. She likely will spend spends days or weeks afterward “paying” for her extra effort.

Her routine becomes a series of making doctor appointments, spending time on the phone with her insurance company, and making trips to the pharmacy. It’s a gloomy fact, but she acknowledges to herself that if she didn’t see her doctors, she probably wouldn’t get out at all.

She researches treatments here and there on the computer but, feels more confused than ever afterward. She’s tried sporadic diets and bought a fitness DVD that was supposed to help her become stronger. With each attempt, she felt increased symptoms right away and she quit. She believes they didn’t work and that nothing works. She decides that her severity of fibromyalgia symptoms must just be “in her genes.”

She worries that her future will bring even less freedom. Her greatest fear is that her symptoms will continue to increase.

She talks to her sister only occasionally. She finds it too exhausting. They never discuss health issues and she resents the fact that her sister always seems to be running off to do fun things.

Kelly’s story

Kelly also experiences a cascade of unexplained symptoms. A minor auto accident leaves her with body aches that never seem to go away. Her doctor commented that she was fully healed. He went on to say that if she still “said” that she has pain, then maybe she should deal with personal issues. He declares that she should be pain and worry-free.

But, she wasn’t.

Other pains and worries seemed to pile on. It became harder to concentrate at work. She used to quickly remember her boss’s schedule and never had to write down her to-do’s. She wasn’t sleeping well at night and while she resented her doctor’s comment about her personal life, she wondered if her symptoms were related to her stressful and taxing career.

Her overall achy feeling settled into her neck and shoulders. At this point, she realized her health concerns were impacting her daily life and her ability to keep her job. It wasn’t getting better, and something had to be done.

She visited a different doctor and ended up jumping through the hoops of obtaining a diagnosis. At first she was told that she must be the nervous type. She was told that it was probably an emotional problem. She felt slighted by her doctors and misunderstood.

Upon recommendation from a friend, she saw a chiropractor who, after a careful exam and symptom history, told her that he felt she had fibromyalgia. She had no idea what that meant, but at least she had a name. She went to yet another MD and the diagnosis was confirmed.

Over the next couple of years, she saw more doctors, more specialists, and tried many prescribed medications. She felt each remedy seemed to offer a glimmer of improvement and while she felt better for a while, the overwhelming pain and fatigue returned within a short time.

She returned to her chiropractor who had several recommendations. He suggested nutritional changes, a protocol of physical adjustments, some slow-moving, non-impact fitness programs, and a few stress management options such as yoga, tai chi, and qigong.

He also shared that she may find benefit from treatments such as acupuncture, meditation, detoxification, hormone balancing and more.

She took this all into consideration and chose to try yoga first. It’s not that she thought it was a solution; it just happened to fit into her after-work schedule. It wasn’t convenient, but she knew she had to try something. She didn’t see how it could really help, but since what she was doing wasn’t working, then she felt she had nothing to lose.

At first, the classes made her feel awkward and conspicuous. She avoided the mirrors in the classroom as she became aware of extra pounds that had piled on. She also realized that she’d lost the flexibility she’d had in her younger years. Soon, however, something surprising happened. She bonded with the instructor and with a few of the attendees. She became so engrossed in chatting with them before and after class that she forgot about her awkwardness. It became obvious that no one was there to judge another’s skill levels or appearance and she felt more at ease.

She added a few more classes to her repertoire and found that she could work in a tai chi and qigong class before work a few days a week. At first, she just enjoyed the camaraderie of the classes. Before long, however, she noticed that not only was she starting to feel a bit more flexible, she was definitely feeling more relaxed. She learned to tune out her “to-do’s” for the day at least while in the class. Some days, she could get that relaxed feeling to last even longer.

She didn’t want to get her hopes up, but she confided her new-found progress to her yoga instructor. Her teacher told her that with each class, she had the opportunity to change her body. But, if she made them a DAILY practice, she’d have the opportunity to change her life.

Kelly took that advice and went on to experiment with other movement and stress-relieving practices.

While Kelly’s pain issue was still very present, she realized that it wasn’t in the forefront of her mind every day. Her new friends encouraged her to add more healing practices to her life. She decided to see a holistic nutritionist where she was able to figure out what foods were problematic and which ones caused increased pain. She was shocked to find that most things she’d been eating were negatively impacting her digestive system.

With this support and guidance, she made healthy dietary changes and found even more improvement in her pain levels. Eventually, she added high-quality supplements to her protocol, further assisting her digestive system to heal. Along with the added activities of walking, using a rebounder, stretching, some weight training, and even dancing, she knew she was onto something. She didn’t know what, but she knew she wanted more.

Without really paying attention, she realized her pain levels were decreasing. Her sleep and digestion improved. Weight loss, healthier skin and hair, improved mobility, and fitness endurance levels were just a few of the “side effects” of her new healthier lifestyle.

An unexpected benefit was realizing that she could think more clearly, problem-solve more effectively, and sustain an overall feeling of positivity and hope. She felt far more connected with her own thoughts, desires, and in her personal relationships. Others around her noticed this change including her boss and her family.

One day in a meditative qigong class, she realized that her administrative skills that supported her boss so well could instead support her own career goals. She admitted to herself that she’d been increasingly dissatisfied in her current career. Once the idea of a new career popped into her head, it didn’t take long for ideas to bloom.

Taking a leap of faith, she opened a small health food restaurant near her favorite yoga and tai chi studio. Kelly’s Cuisine offers healthy meals, snacks, and veggie juices for those going to or from the gym. With her family’s support, she’s making a go of her new business and anticipates great success.

She’d love to share this success with her sister, but most times when she calls, the answering machine picks up. Her sister rarely calls back. When they do talk, it’s just a superficial chat about family life. Although Kathy always says that everything is fine, Kelly has a strong feeling that Kathy is very unhappy.

In summary

Obviously, these characters are fictional. As mentioned, I combined the experiences of people I know into two separate illness progression pathways for illustration purposes only. I wanted to make the profiles distinctly different.

Here’s what the sisters had in common. They shared the same genetic predisposition and the same nutritional deficiencies. They had the same exposures (if there happened to be toxins) to the nearby air, ground, or water supply. They had the same medical treatments including frequent antibiotics and dental work. They also shared the trait of determination when it came to seeking solutions.

While the sisters in this illustration traveled separate paths, it’s far more common for us – in reality – to move back and forth between the two paths. We’ve all been Kathy at times and Kelly at other times. The goal is to lean more toward being Kelly-ish.

So, why did the sisters find different results? Was it happenstance, circumstantial, different doctors, differences in their work, or different support from their families at home?

Or was it purely a difference in personality?

It actually was a combination of several factors. Here are some important tips to keep in mind regarding Kelly’s success.

  1. Kelly allowed herself to take action even though she didn’t know the outcome and despite her feelings that it would probably not work.

  2. Kelly stuck with her yoga/tai chi practice even though she didn’t see pain relief for quite a while.

  3. Kelly allowed other signs of progress (improved mood, stress-reduction, the social factor, etc.) to motivate her to continue. Motivation isn’t something you either have or don’t have. Read “Motivation: It’s Not What You Think” – for more information.

  4. Kelly used her success in one area (fitness) to launch her desire to learn how to support her body in other areas including healing nutrition and stress-management.

  5. Kelly kept an open mind about what new things to try. She learned that her best ideas happen while practicing activities that move the body and relax the mind.

  6. Kelly continued to pursue the things that helped her to heal. And, her persistence created healthy habits.

My own experience

When I first tried tai chi, I did it because I knew I had to try something, and my doctor was out of ideas. I had no faith at all that it would work. I also didn’t have the benefit of today’s many published studies on the efficacy of tai chi and yoga.

I actually chose tai chi, over some of the other fitness classes at the gym, because it was offered at the right time of day for me. Because of my pain, early morning workouts were not an option.

Initially, I thought tai chi was ridiculous and slow. My mind raced as I did it and I couldn’t wait to leave. (I didn’t know that it can be done at various intensity levels.) It’s a good thing that I was willing to stick it out for a while. That willingness to try has paid off in bonuses that keep on multiplying. And, I’m very grateful for the experience. I practice tai chi to this day and plan to for the foreseeable future.

My instructor calls her tai chi classes Moving Meditations – a very apt description. When I began, I had no idea what meditation was all about, but I quickly learned that I needed it. The mindset (stress-management) piece of the puzzle is as important as body movement and nutrition.

Wrapping it up

What can we learn from Kathy and Kelly? We can recognize that much of our healing depends on our focus. Are our inner thoughts supportive or disempowering? We all experience results that disappoint us, but do we tend to spiral down into despair or spiral up into optimism?

It’s my hope that you assemble an encouraging team of practitioners, friends, family, co-workers, and neighbors to support you. This is about you. It’s about you forging your own path.

The journey to heal is ongoing – and it’s worth every step.

_________________________

Sue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia writer for the ProHealth website community.

Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™– a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.

Would you like to find out more about the effects of STRESS on your body? Download Sue’s free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.

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6 thoughts on “A Fibromyalgia Tale of Two Sisters”

  1. TCDM247 says:

    I clicked into this story because it was erroneously listed in the news search results for “fibromyalgia”. Well, there goes 10 minutes of my life I will never get back. If my own health journey has taught me anything, it’s this: you can pick and choose your snake oil, but at the end of the day, it’s still all just snake oil. While I’m the first to admit that “modern medicine” still has very few answers (about many diseases and conditions, not just fibromyalgia) this article’s bias toward “alternative medicine” couldn’t be clearer. And I guess if you have the financial resources and time to shell out for a gym membership or classes, acupuncture, massage therapy, supplements, and of course an exclusive diet of whole/raw/organic non-processed foods then this is a no-brainer! …if it works. Of course in her bias the author seems to ignore the fact that, very often, these things don’t being relief any more consistent or long lasting then their conventional medicine counterparts – and are generally much more expensive. It is disheartening to see someone who seemingly has significant standing in her local community play to the old (mostly debunked) idea that people with fibromyalgia would be cured if they would simply eat healthier, exercise, and lose weight. Sure, those things would make MOST Americans feel a little better in the long run. But it’s not going to fix the “I just got beat up and run over” feeling that most people with fibromyalgia experience when they wake up each morning. And the idea that just not thinking about it will improve your symptoms steps back about three or four decades to the “it’s all in your head” onus that has been scientifically dis-proven. It’s health professionals like this that hinder real progress by promoting unproven therapies that have little or no scientific basis rather than, for instance, promoting testing for mitochondrial disease when a patient already diagnosed with fibromyalgia presents with symptoms indicative of problems with 3 or more major bodily systems. Hopefully one day medical science will have more answers. In the meantime, for the most part, the snake oil pushed by modern medicine seems to provide the best bang for my buck, AND it’s covered by insurance. The relief may not be permanent, but anyone with chronic pain knows sometimes it’s just about getting through the next hour, the next day, the next week. And that just has to be good enough, because there’s nothing else you can do. And I think we all know that if Yoga was the answer the story of chronic pain would be a very different one.

    1. a2yourit says:

      This is such a great article and so beautifully written. I have had Fibro and CFS for over 25 years and it was when I first got tuned in to Wayne Dyer and Louise Hay and energy healing that things started to shift.
      It is amazing how so many of us take the path of poor me,I certainly did for many years and actually listen to our doctors ( many who have no answers except medication) when it comes to chronic conditions. I love that Sue showed both sides of the fence, thank you Sue!

    2. zoom2222 says:

      It’s important to remember that each of us that have fibromyalgia are on our own journey. This is not a text book illness. In other words, what works for one person, may or may NOT work for another person. I’m sure out of the millions of us who have fibromyalgia agree that if yoga was the only answer, we’d all be obsessed with yoga and not longer carry the burden of this illness.
      It gets old reading or hearing stories of people who assume what worked g or them works for everyone.
      This story started out good but was a huge disappointed in the end.
      The story gas good points, but I’m shaking my head in disgust because the author made t he first sister seem like someone who gave up and t he second one fought for her health.
      Realistically we all fight, every hour of our lives. No matter where we are as individuals, as long as we are fighting we are on the right psth. Just because yoga didn’t work for someone DOES NOT mean they gave up.

  2. JamesFugedy says:

    Thank you for the infomercial. Rarely if ever does this self-serving formula provide any relief for moderate to severe cases of fibromyalgia. Fictional characters excepted.

    Transcranial direct current stimulation (tDCS), a painless, non-invasive procedure using a portable stimulator and sponge electrodes positioned over targeted areas of the brain provides relief for fibromyalgia, as demonstrated in a Harvard study in 2006. 5 20-minute consecutive, daily tDCS treatments reduced pain 50% which persisted for 2-3 months. A review done at the Medical University of South Carolina in 2012 recommended tDCS as a first-line treatment for fibromyalgia. tDCS can be self-administered at home, increasing convenience and reducing cost.

    Why isn’t tDCS recommended more frequently? Because it really is an effective medical treatment for fibromyalgia and competes with the no-proof-exercise-diet-supplement-yoga scams which only work for people selling the package and fictional characters.

    1. Feldon says:

      Can you provide more information on the MUSC study? Who, what where? I’d like to contact them. I was diaegnoised many years ago with Fibromyalgia but feel that having 3 fused vertebra in my neck the real problem is coming from there. Anyhow I do believe I have overlapping symptoms and always consider the latest information on Fibromyalgia relevant and worth serious consideration.

      If you could provide further info on the study it would be very much appreciated. My email address is: feldonstarns@yahoo.com.

      Thank you…

      F

  3. atl0774 says:

    As someone who has taken both paths, I must say that the pain of Fibromyalgia has been somewhat less of an issue for me than my sleep, which is a code I have yet to crack. Waking up too early too many days made me very groggy at work and barely able to function for 2-3 years before I finally got really sick and had to pause using disability, if it lasts. Every day, I take about 9 medicines, and they help with the pain but not the fatigue. I have a number of autonomic issues that plague me as part of my Fibro, including orthostatic intolerance which I believe is really what keeps me from working (I can be a zombie in my job; it’s not rocket science). I am trying acupuncture, but it seems almost worthless compared to a good massage from one of the many good-looking men in our congested city of Atlanta. From what I can tell, you need to stay “in the groove”: being in places that make you feel good and meeting new people who appreciate you for who you are and doing things that make you feel empowered. I hate the way that sounds, but I know that not meeting enough new people in my life and not finding a sense of community likely worsened my Fibro. I know my fatigue and resulting inactivity played a huge part in that; I hope I’m not stuck in that loop forever.

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