DATE: Saturday, May 4, 2019
TIME: 8:30 AM Registration Begins; 10:00 AM Opening Ceremonies
LOCATION: Shady Oaks Baptist Church
ADDRESS: 1336 Cavender Drive, Hurst, Texas 76053
JOIN CONVERSATION: https://www.facebook.com/events
DATE: Saturday, September 22, 2018
LOCATION: Between the bridges (On the corner of Claiborne Avenue and Grand Boulevard)
9:30 Early-bird registration & check-in
10:00 Registration & check-in
11:00 Education & inspiration program
12:00 1K/5K fibromyalgia awareness walk
2:30 Closing ceremony awards & raffle
ADDRESS: 8701 McAfee Street, Parkville, MO 64152
JOIN CONVERSATION: Together Walk Facebook Page
Brittany Lee, LPN. Golden Age Nursing Facility. “Caregiver Burnout”
Kimberly Mitchell, Advocate. “Living with Fibromyalgia and Sarcoidosis”
Hal Haney, Coach. Greenwood High School. “Easy and Safe Exercises for People with Disabilities”
Today a woman with fibromyalgia called my office frantically searching for legal guidance. In the midst of a contested divorce, Julie (not her real name) was experiencing fibro flares exacerbated by a car accident two weeks earlier. Earlier that day, she was seeking a delay from the court for the divorce proceedings while she recovered. After explaining that she had fibromyalgia and was in more pain since the accident, the judge asked her, “How did you get to court?”
“Since you were able to drive, and you look just fine to me, I deny your petition to delay the divorce proceedings.” And the judged closed her case, changing her life forever.
Through her tears on the phone, Julie told me what she had wanted to tell the judge. “Your honor, I didn’t sleep last night because I was afraid if I used my prescription sleep medication, I’d sleep through my alarm to wake me for this hearing. And then I drove here two hours early and waited in the parking lot so that I wouldn’t be late. I am not able to defend myself and cannot afford an attorney to help me with the divorce.”
My heart could feel her anxiety, fear, isolation, and fresh insults. I also knew that she was in serious emotional distress. After talking together, I took a walk for a drink of water and reflected on how often insensitivity and judgment about debilitating and life-altering pain play out in everyday life. This stigmatization is often internalized by the person in pain–by thoughts that they did something wrong, or they are emotionally unbalanced, or they are too sensitive. Stigmatization increases stress and results in higher pain levels with less functionality.
The skin on my back usually feels sunburned. The carefully chosen, padded cushion on my work chair and the lumbar support cushion are ergonomic adaptations I need to work at my desk, which is personalized with sawed down legs. Desk lamps provide soft light to work by because the blinds on my window are closed; the sunlight and overhead fluorescent lights tire me easily. Few people know of the extra effort and unconventional adaptations (like Julie’s and mine) that people with fibromyalgia must expend to participate in society and meet responsibilities.
I knew exactly why Julie had stayed awake all night and had driven to the courthouse early. And her impending divorce affirmed the findings by University of Michigan researchers in 20 years of data on 2,717 couples (where at least one of the partners was over 50). They found that not only did 31 percent of marriages involving at least one sick partner end in divorce, but the risk of separation for older couples was higher when the wife, not her husband, was ill.
You’re not alone in your struggles with fibromyalgia. Living with this life-altering condition is very challenging. Judges and officials who create policies and won’t listen to the lived experiences of people with chronic pain conditions and include their expertise in consideration when rendering decisions and recommendations are guilty of perpetuating stigmatizations at the highest levels of authority where mutual respect and leadership are expected.
Changing American cultural perceptions and stigmatizations about pain must start with making it visible. Your voice matters. Please join us in a Together Walk near you or support a virtual walk. Thank you.
Welcome back to the Together Walks Blog! We wanted to create a simple checklist of some things that you can do to prepare for your upcoming together walk. Here we go!
- Go follow us on Facebook, Twitter, and Instagram.
- Check out the blog posts. (Which we see you have already found :P)
- Clear your schedule for May 12th
- Register for a Together Walk!
- Invite your family members to join you.
- Invite your friends to join you.
- Invite your…….how about you just invite anyone and everyone you know.
- Spread the word. We want to make the world more aware of exactly what fibromyalgia and chronic pain is. YOU can help us do that.
Chronic Pain and Fibromyalgia are difficult but are made easier with people to help along the way. Support the community by inviting everyone to come be educated and walk together with us!
(Part 1 of this blog was published on March 18, 2018. Please click here to read it.)
If you wonder at times if you’ve got brain fog, it’s probably your brain saying hey – you better change something because my connections aren’t working so well today.
Unexpected physical symptoms will occur: low grade fevers, food intolerances, migraines from bright lights, feeling agitated, ringing ears, extreme tenderness to touch (even your scalp), deep physical fatigue, and funny, rearranged words like kin pushion instead of pin cushion will pop out of your mouth during conversation. Don’t be alarmed. Take a few deep breaths and center yourself. Then immediately get some rest. These are FM symptoms that come and go. There are too many additional physical sensations to list, so I’ll just encourage you to lovingly accept yourself, stay positive, and think about something that you enjoy.
Surround yourself with uplifting beauty. Be honest about setting health goals – walking for two minutes daily and cutting out wheat are realistic places to start. Keep moving because your muscles will stiffen up after staying in one position for more than 15 minutes. Stay hydrated to lessen your headaches.
After enduring the brain-seizing pains and life-altering symptoms, you still have two big, hard things to do. Eliminating both toxic relationships and allowing a period of grieving over “what could have been” will improve your health. Connect your mind and body and spirit. Learn to love yourself.
Recognize when depression sets in and let someone know what’s happening. Be open to talk therapy. Tools—ways of changing how you see things—will free your mind of cultural taboos about being sick.
Be present. Regularly let yourself be off duty and watch clouds. Your brain needs a rest because it’s been so busy managing the extrasensory perception and overload of neurochemicals.
A different, interesting, and purposeful life is ahead of you. Your life will be enriched in ways you cannot anticipate now. Hang in there. Connect with others who understand. Together you’ll learn to love life again.
Someone asked me what I wish I had known about fibromyalgia at the height of my misery and pain, and when I first suspected that I had FM symptoms. So, following the suggestion I’ve read time and again in books, I wrote two letters to myself–looking back with advice and looking ahead with hope. I hope you’ll comment and share your thoughts of what you wish you had known earlier about fibromyalgia.
In the coming months, you will be walking a unique and unfamiliar path. Nothing in life so far has prepared you for the changes your body and spirit will endure.
Take heart, because others will reach out and encourage you to trust your intuition. Be still and listen carefully despite the searing, stabbing, and throbbing pains. Quiet your mind when the world spins madly around you with a confusion of sound and light. And when you feel your life force slipping away, gently evaluate why. Have a touchstone to stay grounded when nothing makes sense and mixed-up words roll off your lips. You’ll be okay.
The bizarre sensations like when your hair hurts, or you feel like screaming after sitting on a hard chair for a few minutes, are symptoms of central sensitization. This means your central nervous system responds to your environmental stimuli in a heightened and hyper-vigilant state. Learn what calms your body and keep it nearby–lavendar and a silk scarf in your purse. Give yourself permission to stand and walk anywhere at any time.
When you’re feeling really out of whack, strike a Tibetan bowl to the beat of shamanic drumming. You’ll laugh about this suggestion because you always liked the Beatles over earthy music. Crying over changed life dreams will help. More sunshine improves your pain and spirits.
For a couple of years record your daily activities and their effect on symptoms. And for heaven’s sake, wear a loose dress when your bra and pants cause your back to feel like it’s sunburned. Little steps really do lead to big changes – for both good and bad. Don’t get lazy about eating nutritious food or going to bed on time.
(to be continued…)
“Imagine having pain all over your body, constant headaches, feeling exhausted all of the time, and your mind always in a fog,” Terry McSweeney recently told a local audience. “Now picture that no one believes you, not even your doctor. That is what fibromyalgia is for many.” Terry lives with this disease every day.
A severe shortage of pain specialists in the U.S. means patients have to rely on primary care physicians who are not trained in treating pain, including the integrative, multidisciplinary pain approach that patients with fibromyalgia need.
Pain is the number one reason people seek medical treatment. Yet U.S. medical schools allot a median of nine teaching hours on pain and its management, or .03 percent of the total curriculum hours over four years of training. Canada provides 19.5 hours.
“Untreated chronic pain conditions like fibromyalgia have a devastating impact on individuals, often resulting in disability. Careers are cut short, lives are derailed. No one is immune from developing chronic pain,” said Jan Chambers, founder and president of the National Fibromyalgia & Chronic Pain Association.
Myths and stigmas about fibromyalgia influence how people with this neurological disease are treated. Many patients report that it’s like the worst flu you’ve ever had, but it lasts forever. Some patients recall their severe pain starting after motor vehicle accidents, surgeries, or serious illness, and never leaving.
Volunteer Together Walk organizers are trying to break the myths and stigma, and they need your help. Please register for a Together Walk because together we’re stronger. And if you’d like to be a volunteer to spread the word even farther, we’ll ply you with gentle hugs!!
Research shows that 14 adverse childhood events occurred more frequently in people with fibromyalgia than a control group. This population has heightened sensitivity to pain, more additional symptoms of other diseases, and a greater consumption of analgesics. Adaptive techniques, cognitive behavior therapy, and association with supportive social circles can improve the severity of fibromyalgia symptoms.
Are you an inspiring akoya pearl, a brilliant diamond, or a fine wine? Known for their character, each overcame nature’s adversity. What about ACEs in fibromyalgia?
Pearls are formed as an oyster protects itself from irritating grains of sand. Diamonds are formed under crushing pressure and intense heat. The best grapes come from deep mountain slopes with rocky soil that stresses the roots.
Adverse childhood experiences (ACEs) are fairly common in the United States, with 46 percent of the population witnessing a parent’s divorce, living with someone who has a drug or alcohol problem, sexual abuse, verbal battering, etc., according to a recent report from Child Trends.
ACEs commonly occur for all, but trauma is different for each person. Genetics, biology, and temperament play a part in how people respond to these cirumstances. The degree to which a person overcomes the negative impact of ACEs is affected by how they narrate their life. That story can sound like “nothing good happens to me” or “life has its ups and downs.”
The National Institute of Medicine report “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research” confirmed the relationship between ACEs and chronic pain conditions in adulthood.
In a key European study, 14 specific ACEs were found to occur almost twice as frequently in FM patients than the control group, leading to the finding that critical life events influence FM symptoms exhibited by patients. Traumatized FM patients demonstrate a heightened sensitivity to pain, more additional symptoms of other diseases, and a greater consumption of analgesics. Of interest, the group noted that compared to the control group, parents of FM patients were not able to express affection through physical care three times more frequently, and physical violence between the parents was reported roughly seven times more frequently.
It’s natural to draw on life experience to make sense of the world. But what if those experiences are maladaptive and perpetuate the cycle of chronic pain conditions? Cognitive behavior therapy has shown sustained improvements in pain, coping strategies, and overall physical function for fibromyalgia, and particularly with juvenile fibromyalgia.
In speaking about his ACEs with Oprah Winfrey, Tyler Perry commented that “what you feed will grow in your life, and what you don’t will starve.” Perry credits Winfrey for inspiring him to start writing down all of the things that happened to him as a way to start untying the holds ACEs in his life had on him. A simple journal or more sophisticated online apps work to start writing about ACEs.
People with FM are not alone in their challenges and experiences. Reaching out and finding others who relate, understand, and inspire are critical to living well with fibromyalgia.
Come celebrate victories and find reliable information and local resources at Together Walks on May 12th, Fibromyalgia Awareness Day. Be inspired by others and share your thoughts to inspire others. Together we make a difference!
All of our presidents have a story to tell, and this snapshot tells how one impacted recognition of chronic pain.
We say “thank you” to President John F. Kennedy on this Presidents Day for inspiring us to keep trying when it seems impossible. Kennedy was our 35th president and the youngest ever elected. Presidents Day is an American holiday observed on the third Monday in February annually to commemorate all U.S. presidents though it originally celebrated George Washington’s birthday during his presidency.
According to Men’s Health, the image Kennedy conveyed was of a “young, vigorous man.” However, the lively man portrayed to the public had another part of his life that wasn’t as visible. J.F.K. suffered from a series of medical issues, the worst being his chronic lower back pain.
One of the doctors who had a hand in helping this president was Janet Graeme Travell.
An American physician and a medical researcher, Dr. Travell studied and practiced in many different places including Wellesley College, Cornell University Medical College, New York Hospital, Seaview Hospital, and Beth Israel Hospital. Travell was a leading pioneer in the study of referred pain and the discovery of trigger points in musculoskeletal pain. Her many different techniques for the treatment of myofascial pain led to her becoming the first female physician to Senator John F. Kennedy. When Kennedy was elected for president, she was then called to be his personal doctor.
While at the White House, she became an Associate Clinical Professor of Medicine at George Washington University. After leaving the White House, she continued to teach, attend conferences, and write articles. Travells’ research and over 100 scientific articles contributed to furthering the concept of myofascial pain syndrome (MSP) secondary to trigger points and the recognition of symptoms like muscle pain, spasms, and tenderness.
The cause of MSP is unknown but is a chronic condition that affects the fascia (connective tissue that covers the muscles). Pain can be referred to the soft tissues, and inflammation is often present.
Trigger points (TPs) or “knots” in the muscle are sensitive spots in soft tissue which can lead to the chronic condition of MSP. Optimal treatment of MPS is a multi-faceted approach including TP injections, stretching of fascia, stress reduction, physical therapy, sleep improvement, and medications. MSP is generally localized muscle pain affecting one side of the body or one side more than the other. The symptoms often mimic fibromyalgia, where muscle and soft tissue pain is diffuse and symmetric, involving both sides of the body.
Travell’s work advanced research for fibromyalgia and chronic pain, but it has it should have. We want to change that. Together Walks is a way to support this research. The money raised will go to the further research for fibromyalgia and chronic pain. We hope you will take the opportunity to make a difference.