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Become a support group leader

Pain Connection, a program of U.S. Pain Foundation, will host a two-day training program for support group leaders in mid-March in San Francisco. The dates are most likely to be March 15-17, but will be confirmed in the coming week. All are welcome to apply to attend.

The trainings are designed to teach peer leaders and/or health professionals to work with individuals with chronic pain in a group setting. Attendees leave feeling empowered to begin their own local support groups, with ongoing guidance and help from Pain Connection. Presently, U.S. Pain and Pain Connection offer support groups in 14 states, in addition to three monthly conference call support groups.

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Full name: Nancy Harris Bonk

City & state: Buffalo, NY

Age: 56

Pain warrior role: U.S. Pain advocate since 2014

Type of health conditions: Migraine disease, intracranial hypertension, fibromyalgia to name a few!

Favorite tip for others with chronic pain:  Living with migraine, a neurological brain disease, can be overwhelming and frustrating but, accepting our diagnosis is important and doing so enables us to become educated and empowered patients!

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Rare Disease Day is Feb. 28

The National Organization of Rare Disorders’ (NORD) yearly Rare Disease Day will be observed on Feb. 28, 2019. Rare Disease Day is an annual celebration the 25-30 million Americans living with one of the over 7,000 rare or orphan diseases. One in ten Americans suffers from a rare disease, a disease affecting less than 200,000 people.

This year’s campaign, “Show Your Stripes,” calls for the rare disease community to proudly dawn stripes on Rare Disease Day. Patients with rare diseases are sometimes referred to as “zebras.” The term comes from the aphorism coined in the late 1940s by a clinician who instructed his medical interns: “When you hear hoofbeats, think of horses not zebras,” meaning that they should consider the most likely or common condition when diagnosing patients. With rare disease patients, however, clinicians must think of more rare conditions, or zebras.

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Social Security Disability Insurance (SSDI) can be a lifeline for individuals who are disabled by chronic pain. If approved, it can provide monthly insurance benefits to those whose disabilities are so severe that they cannot work a substantial amount. However, the application and approval process can be rigorous, and because assessing pain can be extremely challenging — given that it is invisible, subjective, and stigmatized — this may mean that some individuals with pain are incorrectly denied benefits.

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A new video about the Pediatric Pain Warrior retreat in Disney World is now available. Held last November, the weekend brought together 142 kids with pain and their family members from across the country. The event was the official kick-off of U.S. Pain’s new Pediatric Pain Warrior program, which is dedicated to the unique needs of children with chronic illnesses and their loved ones.

The video was created by Yellow Dog Productions and highlights the kids’ experiences and why the weekend mattered to them.

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Navigating school systems on your child’s behalf can be overwhelming and confusing.

On Jan. 28 at 12 pm EST, the Pediatric Pain Warrior Program will host a webinar, “School accommodations: A parent’s guide,” to help parents and caregivers understand and advocate for their children at school.

The webinar will feature Mari Franklin, JD, an attorney specializing in children’s rights in the education system. Mari has experience with IEPs, 504s, and FAPE both professionally and personally–she has a daughter with Ehlers-Danlos syndrome.

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On Jan. 31, U.S. Pain Foundation’s Advocacy Network will host a free training session for existing advocates and interested volunteers to learn what it means to be a patient advocate.

Attendees will learn about issues impacting Americans with chronic pain and what patient advocacy really means.

Those who register will also learn about:

  • How decisions are made at the state and federal level
  • Building relationships with lawmakers
  • Various ways to advocate
  • Why sharing patient stories matter

To register, click here.

Learn more by watching a video here.

Register here

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Most 16 year olds are focused on their cellphones and televisions. But not 16-year-old Tyler Cashman, of Tewksbury, N.J. Tyler will host two “Points for Pain” fundraiser basketball games at Old Turnpike Middle School on Jan. 24 at 5 pm and at Voorhees High School on Jan. 29 at 7 pm. [PLEASE NOTE: The Jan. 29 game has been reschedule to Feb. 11 due to inclement weather.] All proceeds benefit Pediatric Pain Warriors, which provides support for children with chronic pain and their families through weekend retreats, education days, a magazine highlighting pediatric patient stories, a pen pal program, and more.

Tyler raises funding by asking sports fans to pledge donations based on the number of points their team scores. In the last four years, he has raised more than $100,000. For his hard work, in 2017, Tyler received an award and $10,000 grant from the New York Yankees as part of HOPE Week.

While the focus of Points for Pain is fundraising, it’s also a great chance to raise awareness about pediatric pain. At the beginning of each game, Tyler explains the challenges these children faces and why support is so important.

Tyler established the program in honor of his mom, Casey, who lives with chronic pain. He witnessed her work with U.S. Pain Foundation, the leading nonprofit for children and adults with chronic pain, and wanted to help. Together, he and Casey collaborated with U.S. Pain Foundation to create the Pediatric Pain Warrior Program.

Unfortunately, Tyler is no stranger to chronic illness himself: He lives with a condition that is causing him to gradually lose his vision. But even his own personal challenges can’t get in the way of his dedication to helping others through Points for Pain.

For more information about Points for Pain, click here or email pointsforpain@uspainfoundation.org. Read More

A high-ranking federal task force has released its much-anticipated draft report with recommendations for improving the management of chronic and acute pain. The public is being asked to provide feedback on the report by April 1.

On Jan. 16, Cindy Steinberg, National Director of Policy and Advocacy for U.S. Pain Foundation and the only patient and patient advocacy representative on the task force, presented a webinar on the report, why it matters and how to weigh in.

Her discussion covered the following questions:

  • Why was this report created?
  • What was the charge to the PMTF?
  • Who created the report?
  • Was there public input?
  • What is in the report?
  • Why does this matter/what does it mean for me?
  • How does it differ from the National Pain Strategy (NPS)?
  • How do I get a copy? How do I comment?

To access a recording of the webinar, click here. A copy of the slides is available here. To learn more about the report or submit comment, visit our toolkit.

Watch the recording

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By Brent Wells, DC, a chiropractor and founder of Better Health Chiropractic and Physical Rehab

If your child feels tired and achy, you may not worry initially. After all, there’s nothing urgent about what seems to be mild, general discomfort. However, if your child is constantly in pain, exhausted, having trouble sleeping, and experiencing intense moods, he/she may have fibromyalgia.

This condition is fairly common in adults, but parents and clinicians may overlook the possibility of juvenile primary fibromyalgia syndrome — that is, fibromyalgia in children.

Juvenile fibromyalgia symptoms to watch out for

Fibromyalgia is a chronic condition characterized by pain and fatigue. According to experts, children will often describe this pain as “stiffness, tightness, tenderness, burning or aching.” This pain can last for months and is often accompanied by other sympt

oms that affect a child’s overall well-being, energy level, and emotional health, including:

  • Tender spots on muscles
  • Difficulty sleeping and fatigue
  • Aches, including stomachaches and headaches
  • Lack of focus or memory
  • Anxiety and depression

If your child is experiencing these symptoms, you should see a doctor. There’s not one test to confirm it, so he/she will go through a range of tests to rule out other conditions.

Unfortunately, there is no one “cure” for fibromyalgia, which can be frustrating for patients, especially children. If left untreated, symptoms can lead to issues at school or making friends. Many parents describe this as a “vicious cycle” where symptoms continue to feed the condition.

Experts still aren’t sure what causes fibromyalgia or how it develops in the body. Some believe that mixed-up pain signals in the brain cause greater pain chemicals and/or overactive pain receptors. Others think it might be triggered, in part, by an emotional event like an illness, injury or psychological stress. But even if the cause involves emotions, the pain is still real.

How children can cope with fibromyalgia

It’s important to create a support team and get your child’s primary care doctor, pain specialist, psychologist, physical therapist, and teachers on board. The more people are aware of your child’s condition, the more they can help him/her cope with symptoms at home and school. You may also want to look for pain support groups near you, for both your child and you as a parent.

Your doctor can help you decide whether medication, such as anti-inflammatories, antidepressants, or nerve pain medications, may be right for your child. He or she also may recommend therapies like injections or topical creams. In conjunction with these interventions, your doctor will probably prescribe treatments like physical therapy and behavioral changes, which are crucial to long-term management of fibromyalgia.

Let’s go over some nonpharmacological strategies for coping with fibromyalgia.

Five strategies for improved symptoms

Although fibromyalgia may disrupt your child’s life, affecting school and friendships, you may be able to improve your child’s quality of life with these natural therapies and changes. Of course, there’s no cure for fibromyalgia, but by managing symptoms, you can help your child get back to some sense of normalcy.

  1. Get moving!

Exercise can be incredibly valuable for managing your child’s fibromyalgia symptoms. Exercise can relieve muscle stiffness and tire out the body physically so that your child can fall asleep more easily. In particular, pool exercises have been shown to help patients because the warm water can have a soothing effect on pain and also promote blood circulation.

Consider signing up your child for swim class to get regular exercise that is both fun and good for symptoms. Start with limited intervals of exercise at first, and slowly increase them as symptoms allow. Aquatic physical therapy can be extremely beneficial for patients whose fibromyalgia is too severe for regular pool activities.

  1. Incorporate meditation methods

While your child may not be interested in meditation, try to incorporate some of the practices in your child’s daily life. After playtime, encourage your child to take a moment to relax and reset. In addition, teach your child how to use relaxing breathing exercises when he/she feels overwhelmed during school or before bed.

Studies show that meditation can help reduce fibromyalgia patients’ stiffness, anxiety and depression. In the least, promoting a stress-free environment and creating a sense of relaxation will help your child feel less anxious.

  1. Say goodnight to fibromyalgia

Your child’s sleep routine is essential for improving fibromyalgia symptoms. Chart out the best routine for your child together. Make sure he/she goes to bed at the same time every day and start “sleep-ready” habits an hour before bed. This routine could include a break from screen time, reading a story together, listening to a relaxing song and/or taking a hot bath. Promoting a relaxing environment will help your child get to sleep.

Make sure you’re not giving your child food late at night, especially items with any caffeine or sugar. Also, be sure take away tablets and cell phones. The blue light can wake up your child instead of helping him/her get sleepy. Sufficient sleep is essential to managing pain.

  1. Change your child’s diet for success

Some experts recommend following an anti-inflammatory diet to prevent aches and pains. In general, an anti-inflammatory diet is based on the Mediterranean diet, which emphasizes fish, fish, vegetables, whole grains, and olive oil.

Update your child’s lunch to include a handful of nuts, or add an apple for a snack. Anytime you can add fruits and vegetables to his/her diet, do it! This boost of nutrients will fuel your child for success. Try to limit junk food as well, which has no value and could actually inflame your child’s pains.

  1. Schedule your child for a physical therapy session

Your child could benefit from seeing a physical therapist or chiropractor near you. Recent studies show how physical therapy or chiropractic can have a positive impact on fibromyalgia patients. Finding the right physical therapist is important. Call in advance to ensure they have experience with fibromyalgia and/or with children. Specific exercises in physical therapy can help to improve your child’s core strength and incorporate techniques to soothe muscle aches and pain.

Similarly, regular massage therapy sessions with an experienced masseuse can improve your child’s exercise, sleep and mood.

Talk to your doctor

A fibromyalgia diagnosis can be challenging, but doesn’t have to take over your child’s life. It’s a good idea to talk to an expert to come up with the most effective care plan for your child, one that ideally includes a diverse range of strategies, like those listed above. Together, you can talk about your child’s specific issues and needs, and figure out the best way to improve symptoms.

 

About Dr. Brent Wells

Dr. Brent Wells is a graduate of the University of Nevada where he earned his bachelor of science degree before moving on to complete his doctorate from Western States Chiropractic College. He founded

Better Health Chiropractic and Physical Rehab in Anchorage

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