In the video below, U.S. Pain ambassador Mia Maysack talks about many issues all patients can relate to – from the struggle of keeping up with medical appointments, to step therapy, to unaffordable treatment options.

The video was recorded as part of our INvisible Project: State Advocacy Virtual Campaign in honor of Migraine and Headache Awareness. (Mia was featured in the most recent edition. You can read her full story here.)

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by Gwenn Herman, LCSW, DCSW

Many patients are trying out telemedicine for the first time as a result of COVID-19. But figuring out the technology can be overwhelming, and you may find it difficult to get your concerns and needs across in a remote setting.

Below, I’ve outlined some tips for how to get the most of your virtual appointment.

  • Before you have your appointment, take the time to write out your questions and concerns.
  • If possible, don’t attend the telemedicine session alone. It is helpful to have someone with you. Sometimes it is hard to remember everything that is said to you when you are in pain and nervous about a visit.
  • If a caregiver will be on the call with you, share your list of questions with them. Have them write down the doctor’s instructions. They can also be an advocate for you. Remember to introduce your caregiver to the doctor.
  • Situate your webcam where you feel comfortable, for example, lying on a mat on the floor, propped up in bed wearing your street clothes, sitting in a chair with pillows, leaning against a wall. If needed, have a glass of water or tea with you. It is an important opportunity for the doctor to see how you acclimate in everyday life and not in an office setting.
  • Secure a private place for the appointment whether you are in your home, office, or car. It is important not to have distractions or background noise. Ensure that there is adequate lighting, so the doctor has a clear view of your face. Have ready X-rays, MRIs, medical reports, a list of medications, herbs, oils, vitamins, supplements, medical cannabis, and reactions to them ready for your provider.
  • A medical appointment can be very intimidating when pain is invisible, especially if this is your first time using telemedicine. Remember, it is your body and you have a right to quality care.
  • It may also be the first time that your provider is performing a telemedicine appointment, so your provider may also feel uncomfortable or awkward. It is a new development and there is a certain amount of trial and error. Be patient with each other.
  • It may be helpful to role-play how you will speak to your provider. This might be necessary in helping you work on needed assertiveness skills.
  • If this is a first visit, feel free to ask the doctor about prior experience with your specific condition.
  • When you talk about your pain, give concrete examples of how pain impacts you, such as sleep issues, missed days at work, family life, cooking, cleaning, sexual intimacy, hobbies—what it feels like, what activity makes it worse, how long the pain lasts.
  • If your doctor orders tests, ask about the following: what the tests are, the actual procedures, recovery time, if a caretaker is needed to provide transportation, aftercare, how to contact your doctor in case of emergency, and follow-up.
  • If you are prescribed medication: ask what it does, write down how and when to take it, ask about possible side effects, find out what to do in the event of a bad reaction, ask how to contact the doctor.
  • You may request that copies of office visit records and medical results for your personal records be sent to your home.

I’ve also developed a handout that can help you organize your questions and concerns before and during your appointment. You can download it here.

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By: Ellen Lenox Smith

When it was first suggested I try medical marijuana to see if it would relieve the pain being experienced, I thought the doctor was nuts.

Back in 2007, I had never once even thought about that as an option. I had tried marijuana recreationally in college and hated the feeling of being out of control of my body. I was desperate, however, and had to consider this as a possibility because, at that time, I was not taking anything for help with two painful, incurable conditions. Since birth, I negatively reacted to most medications. I had gotten to the point where it was better to learn to live with the pain instead of the pain and a reaction to a medication. In time, these reactions were justified through the DNA drug sensitivity testing. (You can learn more about drug sensitivity testing through a past webinar, here.) It showed that I was not able to metabolize most medications, including all opiates and even over-the-counter drugs like aspirin and Tylenol.

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A sign created by pain warrior Sherrie Johnson.

Last month, the U.S. Pain Foundation rallied a total of 761 pain warriors nationwide to urge Congress to allocate funding for the Pain Management Best Practices Interagency Task Force report, a federal blueprint for improving pain care. Cindy Steinberg, National Director of Advocacy and Policy, served on the task force that developed the report.

Through U.S. Pain’s action campaign, 738 individuals sent 2,452 emails to Congress, and 71 individuals made 167 calls. Meanwhile, the hashtag #aplanforpain was tweeted out roughly 1,000 times across social media platforms. People from across 49 states and D.C. participated (if you live in South Dakota, or know someone who does, please join the campaign!).

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A statement from U.S. Pain Foundation

As an organization, the U.S. Pain Foundation strongly condemns racism and inequality in all its forms. We are heartbroken at the unjust and unfair challenges that Black, Indigenous, and People of Color (BIPOC) as well as LGBTQ+ individuals in our community have to face—on top of dealing with the difficulties of living with chronic illness. Studies repeatedly show that BIPOC and LGBTQ+ individuals are more likely to face barriers to health care and be undertreated for pain. (You can read more about health care disparities from the Agency for Healthcare Research and Quality.)

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The Pediatric Pain Warrior Program’s virtual retreat, which began in May, has been busy providing education, interaction, and social events for kids and their families. Among the many activities is an awareness campaign featuring, “Pediatric Pete the Penguin Warrior,” an adorable mascot who has begun making his way throughout the United States.

So far, Pete has traveled to 23 states as well as British Columbia, Canada. Pete’s adventures with different pediatric pain warriors have been documented and can be seen in the slideshow below.

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Pain Connection continues its interactive series, “Building Your Toolbox,” this Tuesday, July 7 at 7:30 pm ET. The meeting will focus on acupressure with Lisa Marie Price. In private practice in Chinese Medicine for 25 years, Lisa Marie Price is a national board-certified acupuncturist (NCCAOM) and received her master’s degree in Acupuncture at the Traditional Acupuncture Institute. For eight years, Price served as faculty and Dean of Students at the Tai Sophia Institute for the Healing Arts, but now devotes herself full-time to her patients. As a founding member of U.S. Pain’s National Coalition for Chronic Pain Providers and Professionals, Price advocates both locally and nationally for improved services and treatment options for chronic pain patients.

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City & state: Los Angeles, CA

Age: 37

Role: U.S. Pain ambassador/advocate since 2019

Health conditions: Anxiety, endometriosis, spastic pelvic floor syndrome, IBS, Sjogren’s, and vestibular and chronic intractable migraine.

Tip for pain warriors: “I bought an Acceptance and Commitment Therapy (ACT) workbook from Amazon and write in a daily gratitude journal that both helped tremendously with my depression and anxiety.”

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Approximately 5,400 individuals and organizations responded to the Centers for Disease Control and Prevention (CDC)’s call for public comment on acute and chronic pain management and whether the CDC should update and expand its 2016 Guideline for Prescribing Opioids for Chronic Pain. Cindy Steinberg, National Director of Policy and Advocacy, submitted a five-page comment on behalf of the U.S. Pain Foundation, which you can read here.

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