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My Fibro Story: Reclaiming my life and health, with Rosie

6 Jun

The author with Rosie

My name is Jeannie Hughes, and I was diagnosed with myofascial pain, repetitive stress injuries and fibromyalgia in 1995, and I have had an on and off struggle of chronic pain -the syndrome- for almost 15 years. In my lifetime, I have had a number of   traumatic incidences that occurred to me, but nothing is as life-changing as becoming lost and not knowing how to help myself.

I pray that no one ever experiences what I went through a few years ago, especially if they have fibromyalgia or any disorder that may affect the central nervous system. They say that the human body cannot survive more than four days without food or water. I went four days without a single drop of water, food, or any sleep, while I had been completely lost in the city.

Having my body deteriorate to such extremes, I could watch my own body fall apart, including my immune system. I lost most my essential belongings and had also been mugged in the subway. I also had an undiagnosed congenital heart defect, which was causing me to faint and fall down. And yet, to the average New Yorker, I looked no different than a homeless person, even though I was a well-educated professional with a Masters Degree from Brown University and BA from Dartmouth College.

While I do not want to go into details of how I survived those four days
without food, water, shelter or sleep, I can say that by the fourth day I
was covered with bruises, dirt, and blisters, and I could no longer stand
upright. I was curled up on the pavement in broad daylight barely able to
yell for help. I was eventually rescued. During the subsequent months, I had
family caretakers and medical professionals to attend to my recovery. But my
full recovery was truly made possible by a newly adopted puppy, named Rosie.
I could find peace and hope through the love and positive energy I channeled
to this dog and the love she returned.  I thought less about what happened
to me. I saw my dog as my new life partner, a new best friend that I could
rebuild my life with when everyone else was busy or could not be there for
me. We could bond and find joy in each other like no other.

People can be insensitive and impatient and say very unkind things People
can cut each other short or avoid expressing kindness. Dogs, on the other
hand, provide unconditional love and show it in the most beautifully
simplistic and timely ways. My puppy-raising and training experience of
Rosie opened a door of reclaiming my life and health, and I later trained
her with special tasks and work to further assist my recovery. She is
trained to wake me up in a timely manner, remember routine health and
medical self-care strategies, alert to strangers, do my laundry, pick up
dropped items, set off an alarm if I am about to faint or have chest pains,
reduce other repetitive tasks around the home, and more. With her
assistance, I am much safer in taking on more ambitious goals in life like
never before knowing what I can do with or without her during episodes of
increased symptoms, physical limitations and pain. For her devoted service,
I serve her. I cook my dog the best dreamy dog dinners, I bake her homemade
treats, and I have agility equipment and toys galore. We take care of each
other because our bond is like no other.

I rarely talk publicly about my life with my service dog, Rosie, but I hope
that others with chronic pain syndromes, temporary or long-term mobility
limitations, or even depression or PTSD will consider having a specially
trained dog. Such dogs can be trained to assist their daily needs in any
major area life that has been substantially limited by disability or a
history of it. The benefits I have received have been remarkable, and I feel
overjoyed that I also have a career around dogs. With dogs, my life has been
so much better than ever before. There is not a day that goes by that I
don’t wake up to tail wags and puppy kisses!  And there is not a night that
I don’t sleep with furry warm head tucked under my chin to help me fall
asleep in peace.

My Fibro Story: “How a 4th grader can make a world of difference!”

4 May

Anthony with wife, Caitlin, who was diagnosed with fibromyalgia over a year ago

My name is Anthony Moronta, and I am the Physical Education teacher in P.S. 158 in New York City. I am also the track and field coach for the school. This year I decided that our team was going to run for the National Fibromyalgia Association. My wife, Caitlin, was diagnosed with fibromyalgia over a year ago, so I wanted to help raise awareness for this disorder using our track shirts.

The day after explaining this to my students, one particular student handed me an envelope. Inside the envelope was a handwritten note explaining how he felt sorry that my wife was experiencing this disorder, and that his family wanted to donate to the cause to help find treatment. I can you that after reading this note, and almost every time I read this note, I almost came to tears because of how important my wife is to me, and how happy it makes me feel that a 4th grader can help to make such a difference in the world.

My student’s name is Lukas. Enclosed is his check for $180 to be donated to the NFA.

Thank you very much!

Becky Halstead: Learning to Say No

14 Dec

By Ben Ryan

After a quarter century of “Sir, yes sir!” Becky Halstead had to learn to say “no.”  To do so was contrary to the very core of her personality.  Relentless discipline had defined her life since early childhood and had helped her shatter one glass ceiling after the next as she marched her way up to the one-star rank of Brigadier General in the United States Army.

“My rheumatologist said, ‘Ma’am, the things that made you do really well in the Army, that served you well, are now working against you,’” Halstead recalled.

Staying in tip-top physical shape was always paramount to her duties.  But beginning in 2004, the running she had enjoyed for nearly three decades began causing searing pain through her legs.

“It was as if you were blowing air into my legs and they were going to explode,” she said.

Typically a head-to-the-pillow sleeper who got by on four or five hours a night, she also began having trouble sleeping for the first time in her life.

She was diagnosed with fibromyalgia not long before her deployment to Iraq, where she was a Commanding General for logistics, leading 20,000 military officers who were responsible for providing supplies, transportation and other support services to a quarter million troops.  True to form, she toughed it through.  But at a great cost to herself.  On a scale of one to 10, she said her pain level in those days was a 10, every single day.

She kept running.

“My attitude was, if it’s not going to kill me, then I’m going to keep doing it,” she said  “It’s painful either way.”

After returning to the States, where she became the equivalent of the president of a university as the first female Chief of Ordnance and Commanding General of the Army’s Ordnance Center and Schools, she faced the growing reality that it was time to make a strategic move on her own behalf for once.

“I had an incredible military career,” she said.  “I was blessed to be promoted early at every rank.  I commanded at all levels.  Some people would tell you I was destined for another star if not multiple more stars.”

In 2008, she decided to retire.

“Yeah, I was pretty upset about having to leave,” she said.  “It was a disappointment.  But I just took that challenge and turned it into an opportunity and went, ‘Okay, well, I’m going to live to be 100.  I’m only 49, I’d better figure this out.’  My whole premise of life is you’ve got to lead yourself.  And so the first thing to do, I think, is to accept that you have this condition, but do not accept that it’s going to run your life.”

Today, 51 and living in rural Virginia, she directs her own consultant group, Steadfast Leadership.  She specializes in motivational speaking and leadership training, inspiring clients in the educational and corporate sectors as well as divisions of the military to achieve the kind of success she’s so long enjoyed.

Running her own business gives her the freedom to design her own schedule, take time to care for herself and reduce stress, and in her words, “to learn to say no.”

“Now, on a daily basis, two plus years out of the military with a lot of changes to my lifestyle, I would say the average day is more like a three,” she said of her current pain levels.  “And I probably don’t let it get above a seven or eight.”

Those changes include adjustments to her diet, the use of chiropractics and a more moderate regimen of exercise.   She’s always keeping a sharp eye out for new information that might help her, and keeps an equally vigilant eye on herself.

“The more educated you are, the more you see the signs and you don’t let yourself spiral out of control,” she said.  “When my legs start to get where I can’t sit still and I feel like my heart’s going to come out my legs, then I know that I have pushed myself too hard.  Sometimes it’s to the point where it takes me several days to get back down off of that.  But at least I recognize it, so I don’t get any deeper into a hole.”

The lessons she’s learned from her own health struggles have informed the insights she shares with others, including her role as an active spokesperson for the Foundation for Chiropractic Progress.

“In my dealing with fibromyalgia, I think it’s helped me help other people to deal with not just fibromyalgia, but any kind of pain in their life: emotional, physical, spiritual,” she said.  “It helped me be a more understanding, caring, encouraging person for other people.”

My Fibro Story: “The Golden Boy” by Ben Ryan

17 Nov

Ben Ryan, "The Golden Boy"

How can I ever forgive myself?  I was the golden boy.  Not just the smartest kid in the class, but the hardest working, the most driven.  For as many hours as there were in the day, I filled them: slaving over school work; pursuing acting professionally; practicing the piano; reading voraciously; doing volunteer work.  I wrote my entrance essay to Columbia about how I reconciled coming out as gay with my public image as the perfect kid the other mothers at school would look on with envy.  (An admissions officer later told me she’d tacked the essay onto their bulletin board.)  The Ivy League was to be a pit stop on my way up into the clouds.  The plan was to work for The New York Times within a few years of graduation.  I never really doubted this dream would come to fruition.  Golden boys get what they want.

On the inside, I was a sensitive, and in many ways delicate, child: plagued by depression and anxiety, not to mention constant headaches, insomnia and episodes of other perplexing physical symptoms.  Unfortunately, actively taking care of my health, mental or physical, never really made it onto my priority list.   And as much as my mother tried to focus our mutual efforts on my well being—putting me into therapy, prodding me to be more social—she sent a conflicting message through the stiff upper lip she maintained through her own difficult and often lonely life.  Descendants of the earliest British settlers, my parents observed the unspoken puritanical rule that it is virtuous to suffer.  Hedonism was anathema.   In my mind, striving to be a happy person, free from pain, teetered in such a direction.  That emotional energy was best spent on something more productive, preferably with a tangible outcome: perfect grades, acceptance letters, a bright future.

In college, I worked every waking hour.  There was no such thing as a weekend.  I made few friends, none particularly close.  Then, the devastating loss of my mother to brain cancer and my own round of mononucleosis formed the one-two punch that would collapse my frenzied drive.  The dam broke: pain seeped across my body.  It became challenging for me to sit for long periods or to type.  Overly-constraining clothing caused searing pain in my hips and lower back.  At times I could barely hold a pen, or even stand for very long.  My first episode of chronic fatigue left me wondering if I should drop out of school in the middle of my last semester.  The promise of holding down a full-time job, much less making it big, faded from view.  After graduating in the top quarter of my class, I was consigned to working from home and picking up catering jobs while my classmates soared ahead and took their place in the ivory towers the college dean had promised us during convocation freshman year.  There were times when I even had to serve them hors d’oeuvres.

I’m 32 years-old now.  I’ve lived with fibromyalgia and chronic fatigue syndrome for over a decade.  While I’ve never had a full-time job during that time, I’ve written freelance for many different publications about topics that are important to me.  I’ve come close to finishing the novel I started around the time I first got sick.  I took up ballet at the tender age of 26, and with a tremendous amount of hard work have become a capable dancer; and at an age when many dancers retire, I’ve started to perform for the first time.  I’ve recently gone back to acting and have started to land a few gigs.

But when I see these accomplishments, I’m still inclined to measure them with the golden boy’s yardstick.  He thinks I’m ten years behind.  He looks around and sees the New York City streets teeming with far more awe-inspiring success stories; wünderkinds impress him the most.  There isn’t a place on my résumé where I can crow to him or anyone about what a feat it is to confront a chronic illness and soldier on with virtually no outside support.

The golden boy wouldn’t have let go of his dreams and made do with a revised plan B.  He wouldn’t stop several times in the middle of the day to tend to his aches and pains.  He wouldn’t get as much sleep as he can.  He wouldn’t devote the weekends to decompression.  He wouldn’t take time for friends and other enjoyable things that make him happy.  He wouldn’t put down his work at three o’clock in the afternoon to go to ballet class and to yoga and to lift weights.   The fact that all of those physical and emotional outlets form an effective arsenal against my physical pain is irrelevant to him.  I enjoy these activities way too much.  And they have too many frivolous benefits, like making me look fit, healthy and attractive; so they must be bad.  The golden boy thinks he would’ve been able to keep logging in the hours, never mind the pain.  In fact, doing so in the face of pain would’ve made him all the more golden; it is indeed virtuous to suffer.

The golden boy is the one who can’t forgive me: for living here in this revised reality.  He deals in fantasies.  He doesn’t see context; he sees petty excuses, laziness and, yes, hedonism.  Unfortunately for him, though, he’s long dead and gone; like a pair of mythical conjoined twins, he and I were cut in two long ago so that one of us could live.  But I imagine I will always wrestle with his ghost.

MY FIBRO STORY: “My Purpose, Revealed” by Cynthia Mittel

8 Nov

 

Cynthia (left, standing next to NFA president Lynne Matallana) at the National Fibromyalgia Awareness Day 2009 march on Sacramento

In 2001, after a work injury led to a cervical fusion, I returned to the surgeon for a post-op checkup and told him I had little bruise marks all over my body. It turned out they were right on the tenderpoints. The orthopedic surgeon asked me if I had ever heard of fibromyalgia. I had not, so he sent me to a rheumatologist for a diagnosis. I was actually very fortunate—I was diagnosed right away.

 

Before
I was working two jobs—I was a secretary for a psychologist and a bookkeeper at a college bookstore—and in what little free time we had, we would get together with friends and barbecue, go to Disneyland, do some light hiking, or just fill the house with family and friends.

After the surgery, I could no longer do even the simplest things. I had pain over every inch of my body, and the same pain in my neck and my left shoulder that I had the day I was injured. The doctors kept telling me, “You have a sprained neck,” completely disregarding the fact that my left arm felt as though it was withering away.

My social life came to a dead halt, but I tried to work for two more years. I finally had to quit and go on SSI and workers compensation. My life became an endless round of doctor visits and surgeries from complications from fibromyalgia.

After

Realizing that I needed to take charge of my health, I went online and looked up “fibromyalgia.” The first entry was the National Fibromyalgia Association! I went to the section to find a support group, and found a group in my town. At my first meeting, they needed somebody to be vice president, so I raised my hand and volunteered. I had never done anything like that before, but I thought, “What the heck? I’ve never had fibro before, either.”

When I moved in October 2008 to Vacaville, in Northern California, I immediately began to look for a support group. The closest that I could find was about 45 minutes away. Driving can be difficult for me, so I decided to start a group in Vacaville. I went to the local hospital to see if we could use a conference room for our meetings, picked a date, and made a bunch of fliers. I took the fliers to local physicians and the library, and ran a couple of ads in the local newspapers. After contacting the NFA for information to share with the group, we had our first meeting in January 2009.

Working with support groups has given me my life back. I now find myself taking on new tasks with a joy that I never found in my work—because I am doing things that are meaningful to me, such as sharing new information with the support group and helping newly diagnosed people find resources.

When I joined a support group, I found my purpose: I want to help people learn how to LIVE—with capital letters—with fibromyalgia. Don’t crawl in a hole; don’t lie in bed and plan to never get up again. Don’t say, “When I feel better I’ll go out and do something.” That may never happen. Go out now.

I have found that helping people really helps me. In my previous life, I had a job and raised my kids, but after the kids were gone, I had no real “purpose.” I never would have imagined going to Washington D.C. for Awareness Day, or joining a candlelight vigil on the steps of California’s Capitol. I have discovered that I am far more capable than I ever gave myself credit for.

I’ve had more blessings since I got fibromyalgia than I ever would have imagined. In spite of the pain, I would never go back!

Click here to watch Cynthia at the Sacramento march for National Fibromyalgia Awareness Day!

My Fibro Story: Marie Macken, founder of Ireland’s Fibromyalgia Support Group Droghed

27 Sep

Members celebrate Fibromyalgia Awareness Day

By Marie Macken, Founder of Fibromyalgia Support Group Droghed
Member, NFA International Leaders Against Pain 2008

I was so lucky to have been awarded the International Leaders Against Paint (ILAP) scholarship in 2008 to go to Washington D.C., and that completely changed my life. Meeting others with fibromyalgia for the first time was so overwheleming! I am in touch with a lot of the group support leaders that I met there.

I learned SO much at that conference that on my return to Ireland I set up my support group which now has over 90 members. We took the summer break and I started back with my next meeting on 18th Sept. Fibromyalgia Support Group Droghed is for family and friends of Fibro sufferers to learn what we suffer from. I am also involved in the Irish Arthritis Association as they also look after Fibro folk here in Ireland. To give something back to them I have joined up and got involved in their group.

So only for the NFA, I would not have got the help, knowledge and courage to do what I do now. The NFA has changed my life, and the lives of those I am able to help now with Fibromyalgia.

I tell my group and new members about the NFA. You are my inspiration and support in my work. All thanks to Lynne! She has helped so many people worldwide. People that she does not know about are all getting support from the NFA! Maybe one day you will have an ILAP conference in Ireland – would be so happy to set it up for you if you ever think about it!

So many thanks again for all your hard work and to all over there in NFA!

Fibro hugs,

Marie

Members getting ready to do a marathon to raise funds for our support group!

Marie (left) with Pam Stewart from Fibro UK (taken in April 2010) at the UK Conference in Bracklesham Bay in Chichester UK (the two met at the ILAP Washington conference 2008)

My Fibro Story by Adrienne Dellwo: “Fibromyalgia may have taken away the TV career that I loved, but it also gave me an opportunity to do something much more personally rewarding.”

18 Aug

As About.com’s  “Guide” on Fibromyalgia and Chronic Fatigue Syndrome, Adrienne Dellwo is one of the top writers and bloggers on CFS and fibromyalgia, regularly bringing her readers the latest news on groundbreaking research, treatment options and tips on managing the chronic pain illnesses.

We are very fortunate that Adrienne took some time out of her busy schedule to write “My Fibro Story,” an exclusive on FibroBlog!

My Fibro Story
By Adrienne Dellwo

I used to be a TV news producer. I thrived on stress, juggled multiple tasks and tight deadlines with ease, and loved working in a noisy, chaotic environment where I never knew what would happen next.

Then, the fibromyalgia that had been creeping up since the birth of my second child leapt onto center stage in my life. My dream job became a nightmare — the stress caused intense pain to ricochet through my abdomen; I lost the ability to multitask; the constantly looming deadlines threw me into a panic; my short-term memory was gone; and the general hubbub surrounding me all the time overwhelmed my brain and left me, on some days, unable to do even the basics of my job.

I’d arrive home (on the days I didn’t call in sick) only to have nothing left for my family, collapsing on the couch in agony instead of cooking dinner or playing with kids. My husband was left with all the work of running a household and raising two young children, as well as taking care of me.

We needed my income, so when I finally decided I had to leave TV news behind, I had two options: applying for Social Security disability, or becoming a freelance writer. It was scary, because I had no idea whether I could be successful with either option.

Right away, my health improved tremendously. I spent what time I could preparing a Social Security claim and scouring the Internet for writing jobs. I also did a lot of research on my illness.

Then one day I came across a job listing: About.com Guide to Fibromyalgia and Chronic Fatigue Syndrome. I said to myself, “That’s my job.” After a rather long and grueling process that involved a lot of writing, research, and tinkering with technology, About.com agreed and I became the new Guide. That was almost three years ago.

Staying on top of research and talking to other fibromites has helped me find treatments that work for me, and of course it’s incredibly helpful to communicate with people who truly understand what you’re going through. When I started, though, I had no idea how rewarding this job would be — I’m regularly brought to tears by stories from readers who say I’ve made a difference in their lives. That’s an amazing thing. I’ve learned that some of the most powerful words in the English language are, “I’ve been there, I believe you, and I understand.”

My blog is one of the more important aspects of my job and takes the largest chunk of time. Even with major improvements in my health, some days I just don’t have the energy to write, or the fibro fog is too thick. Fortunately, I have the freedom to work when I’m able and rest when I’m not, and I can read emails from readers or comments left on my blog for inspiration.

About.com is a great company to work for. They provide all the high-tech tools and support, as well as an amazing platform for unique voices. Even though I work from home, I don’t feel like I’m in this alone. Also, where else can you get a job because you have a chronic illness? Fibromyalgia may have taken away the TV career that I loved, but it also gave me an opportunity to do something much more personally rewarding.

For the chronically ill, blogging is a powerful thing. We often feel isolated and invisible, but when we put ourselves out there in a blog, we suddenly have a voice, and we start to build a community. It does take a lot of energy, especially when you explore topics that are emotionally taxing, but the end result is worth it. I know I’m never alone in this, and I can help other people see that they’re not alone, either.

Today, I’m actually grateful that my life didn’t continue on its original path. I went into news because I wanted to make a difference in people’s lives, but I touch more people in a more meaningful way now. The time I can now spend with my family is invaluable, and I’ve even managed to cobble together a social life, with friends who understand my limitations.

While I’d like to be in perfect health, I’ll settle for making slow, steady progress. The people I’ve met on this journey have enriched my life more than I could ever enrich theirs. Even if I were suddenly in perfect health, I would never go back to my old life. I was forced to slow down, re-prioritize, and simplify my life, and I’m happy for that. It’s given me far more than my illness has taken away.

My Fibro Story: “Despite all of my pain and daily depression, nothing makes me feel more alive than to watch my children smile!”

12 Aug

Norma with husband, Preston and their children, Donovan, 9 and Noelani, 4

My name is Norma Occhiline and I am a 32 year old woman who was diagnosed with fibromyalgia in October of 2007. I believe my fibromyalgia was brought on by stress. I never considered my body as being a living organism needing plenty of food and rest to work properly. As a younger adult I kept this sensation of not needing certain things to push on through life; with little money following my parents’ divorce I learned of hunger and that I could work with it when necessary.

I had just started a new job as an office manager of a dental practice in June of 2007 and was also a mommy to a one year old who slept in two hour intervals since birth. Since my husband and I brought in just enough money to cover living expenses, keeping daycare costs low was a top priority. We had a family member willing to watch our daughter and take our kindergarten son to a nearby school for cheap. However, she lived 20 miles west from our home in Phoenix, Arizona and I worked 20 miles east from our home. I would leave the house at 5:00 am to arrive to open at 7:00 am four days a week.

That doesn’t seem like such a bad exchange at all; a little longer drive to save money. What I haven’t told you yet is that I was also a full time student at Arizona State University’s West Campus in Glendale. Three days out of the week I would drive straight from work to school, approximately a forty minute drive, and then arrive home around 10:00 pm. If you add the drive, work, school and baby schedule all together, you get one unhappy and very tired momma.

But being the fighter that I was, already beating Uterine Cancer at 20, preeclampsia with my son’s pregnancy and gestational diabetes with constant nausea during my daughter’s pregnancy, I had no choice but to continue on every day. Sleep or no sleep and food or no food, I kept on each day.

Then in the fall I started to notice changes in my body. My legs hurt every day, like waking up feeling as if I had run a marathon in my sleep. I was not just tired anymore, but physically exhausted. I was falling asleep everywhere and sometimes during class I couldn’t even get the energy to move my pencil. One of my teachers returned an essay and asked who wrote it because it wasn’t up to my usual standard. I read the paper and couldn’t understand what it meant either. I started to get scared. Then one evening my skin felt as if it was on fire. Anything that touched my skin felt like a hot iron. By then I was terrified.

I had been seeing my primary care physician and he finally referred me to a rheumatologist. He diagnosed me in October as having fibromyalgia and suggested life changes. So I quit my great job and became an inbound call representative for a nearby business and dropped school to half time. Gradually things were getting tolerable because I got more time to sleep. The leg pains never left and more often than not I could barely make it to work, especially in the summer heat. However, as usual I kept pushing myself and got my daughter on a sleep schedule. By early 2009 things started to stabilize health wise. My flare-ups were coming if I didn’t get enough sleep, with hot or humid weather, right before and during my menstrual cycle. But sometimes they were random and took me down for no reason. All of these are my current status, except for the leg pains. Since being prescribed an approved medication for fibromyalgia, I do not have leg pains as often, which I am very grateful for.

Another thing different a year later is that I am now disabled. In April of 2009 I was rear- ended by a woman who was talking on the phone. I now have three bulging disks in my neck and damaged ones in my lower back. This constant pain had caused me to lose my job and all of my income. I am on several medications for both conditions. I have lost 40 pounds and weigh only 115; that is what I weighed at 16.

Every day is a struggle to go on; of course some are worse than others and I can only watch life go by. On the few days I can push myself to get out of the house I enjoy every minute of it. I am still in school by taking online courses through A.S.U. but had to change my major. Who knows if I’ll ever get to use my diploma, but I’m not going to let anything stand in the way of achieving. I want to achieve healing (both mental and physical), my diploma and being the best mom and wife I could have been.

My husband, Preston is my best friend and my ’caretaker’ as I like to call him. He has been with me and continues to support and help me in any way he can. I also have the best support system with friends and family, especially my mother who calls daily to see how I am doing.

I don’t blame anyone for the suffering I have and will continue to endure. I am reading on Buddhism and how to create an inner peace to help me through those dark hours of pain. I also listen to the Beatles and when I am vomiting from the pain I rock back and forth while singing the first song that comes into my head.

Despite all of my pain and daily depression, nothing makes me feel more alive than to watch my children smile. I am also very lucky to have such an adoring husband by my side. My life is worth living and I am going to live it the best way I can.

—–

Share your story: NFA@fmaware.org

My Fibro Story: Recipe for Fibromyalgia Management presents “many opportunities to overcome adversity”

2 Aug

By Diane Thompson, Guest Blogger

Over the past four years, Fibromyalgia has completely changed my life. Though all of my experiences with the Fibromyalgia are not wholly negative, learning to live with Fibromyalgia has certainly presented, as my good friend says, many opportunities to overcome adversity.  Fortunately, I’ve met some fantastic patient advocate folks along the way and have some wonderful family members and friends who have helped me find the path to a greater quality of life.

As with most Fibro patients, the road to my diagnosis in 2006 was a long and frustrating one, and the lifestyle changes required to manage my health are still somewhat of a work in progress. My doctors believe the onset of the syndrome was due to severe emotional trauma I suffered after the accidental death of one of my young cousins in concert with a plethora of other medical maladies, which had gone largely undiagnosed through my childhood and which started to present themselves in synchronicity over the past five years. For now, lifestyle changes and symptom-management are the key ingredients in maintaining a healthy, sustainable, and enjoyable life with Fibromyalgia.

In addition to changing my work environment and recreational activities, I have found there are five main ingredients that make up what I consider to be a successful Fibro management recipe: healthy eating, exercise, sleep, communication, and rest. Success in this case is defined as feeling good and being functional. Though, it can be elusive; I strive for this success daily. A self-management plan for dealing with Fibromyalgia can help individuals achieve an improved quality of life.

Ingredients for Fibromyalgia Management Recipe:

  • Healthy eating is the foundation for the five ingredients. The positive effects of giving up fast food and processed foods and in eating whole foods, will astound you. It makes perfect sense though. Your body is what you put into it. Clean fuel for the body is important for everyone but even more so for those with Fibromyalgia. 

 

  • Reducing stress through daily exercise really helps me. Yoga (or even just good stretching) and reflexology are my favorite combo. Yoga promotes flexibility, circulation, and improves overall state of mind. I also enjoy a nice, long, brisk walk. When it’s time to relax, reflexology does wonders. It’s believed that Fibro patients’ muscles do not heal after deep massaging as non-Fibro patients do, so instead of being restorative, the deep tissue massage can, actually, be somewhat harmful. The last deep tissue massage I had left me hurting for almost 10 days, so I opt for reflexology. A hot bath or shower can also ease sore muscles and joints.  

 

  • Obtaining restful sleep is the most daunting challenge in my own personal Fibro management as well as the most important ingredient to my likelihood of success. If I achieve deep, restful sleep, I’m usually feeling at least human and am mostly functional.  If I add in effectively managing stress and eating cleanly, I feel pretty good. Admittedly, I don’t achieve total success every day…or even 50% of the time, but it is always the goal. 

 

  • Communication is important in many aspects of the life of a Fibro patient. Employers, family members, friends, doctors, etc. have expectations of us, and a flair that lands you in bed can seem like an excuse to skip out on responsibilities, especially because the situation is likely to occur so frequently. Subsequently, feeling like you are constantly letting folks down can drag you down. Set clear and realistic expectations in your career, at home, and with other individuals with whom you are close. It’s also helpful to let your family and friends know where you are with regards to pain on a daily basis. If you’re having a 2 day (1 to 10 – 10 being the worst), folks know you’ll be up and around and able to do more, but if you’re having a 6 day, let people close to you know you’ll be taking time to rest. Ideally, the patient and the individuals in his/her life have an open line of communication and an understanding of realistic expectations.

 

  • Finally, when I have a painful day, I rest. It took me a couple of years to realize just how important rest is in maintaining a healthy and balanced life for someone with Fibromyalgia, and being a Type A personality, it was (and still is) difficult to make myself rest when I need to. Additionally, it’s not always easy for others to understand the unpredictability in this part of managing Fibro, but it is critical for successful management – both physically and emotionally. The mind rests more easily when the body rests. It’s frustrating to feel limited in what we, as Fibro sufferers, can do on a daily basis as it is, so taking additional time to heal is sometimes difficult to manage. Listen to your body. You’ll be glad you did.

Additionally, I do take medications for sleep, pain, and anxiety management, but I don’t include them in the plan above as each Fibro patient is so different and requires an individualized management plan that may or may not include medications. Talk with your doctor. Some individuals may be fortunate enough to successfully manage symptoms without medication.

Finally, though Fibromyalgia does cause physical, emotional, and social challenges, and though we have a long way to go in researching and creating awareness among society, employers, and even doctors as to the reality of pain and limitations presented by Fibromyalgia; there is hope. By taking an active role in managing your Fibromyalgia symptoms and through open communication with your doctors and individuals close to you, you will feel empowered and will be able stave off depression more easily and feel better more often.

About the author:
Diane Thompson is owner of and agent at Thompson Insurance Agency in Liberty, MO, a homeschooling mom, a language arts tutor, and a some times freelance writer. 

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Do you have a story to share with My Fibro Story? Send your story and photo to: NFA@fmaware.org.

My Fibro Story: “As a Native American male, I think the greatest challenge is making people believe that we develop fibromyalgia, too”

21 Jul

By Ken GreyEagle Wiens
Member, Western Band Cherokee

Age: 58 yrs

Year diagnosed with fibromyalgia: 2009

Occupation: Writer

I am Cherokee Indian background, and am among the rare males who have been diagnosed with fibromyalgia. I was adopted when I was seven years old by a family who took care of welfare children. I have been married 36 years to Evelyn. She is Norwegian background. We have two children, Melanie, 33 and Charles, 30. Melanie has Multiple Sclerosis. We have two grandsons by Melanie, James and Shane.

Was there a specific trigger? How did symptoms first appear?
I have had two cervical spinal surgeries in the past two years due to Degenerative Disc Disease. I have one more to go where they are going to take two discs out of my neck and put in titanium plate and screws. The surgeries probably triggered the fibromyalgia.

How do you want to bring awareness of fibromyalgia?
Writing is what I’ve always done best. I am currently in a correspondence writing course. I intend to write stories, essays and articles, often with themes where fibromyalgia is prominent. This is how I intend to make this condition more widely known.

What are some unique challenges you face as a male and as a Native American with fibromyalgia, and how do you deal with them?
I am not able to participate in tribal cultural/spiritual experiences as much as I’d like. For example, I cannot dance in pow wow’s. As a Native American male, I think the greatest challenge is making people believe that we can develop fibromyalgia, too, and that it is a real and physical condition with lots of pain.

I feel a general sense that even my family members have felt fibromyalgia is not a serious condition. My daughter has MS. I cannot speak with her of the pain I experience with fibromyalgia. She just responds that she thinks her pain is so much worse, and thus mine is not worth talking about.

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Do you have a “Fibro Story” to share for FibroBlog?  Email your story and photo to: NFA@fmaware.org

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