Fibromyalgia

Cannabidiol (CBD) oil and product FAQs: Fad or effective? Legal or not?

Trending: Cannabidiol (CBD) oil, gummies, tinctures and more. Why are cannabis products gaining popularity as medical treatments and in general? As more states have legalized medical marijuana, more people have shifted their views on cannabis treatments (like former Speaker of the House John Boehner’s recent change of heart). And last month, an advisory panel at the U.S. Food and Drug Administration (FDA) unanimously recommended a medication made from CBD for some forms of epilepsy. CBD comes from cannabis/marijuana but has some key differences. So, let’s take a closer look at CBD products and some FAQs, like, do they work and are they legal? What is CBD? Short answer: Cannabidiol (pronounced canna-bid-EYE-ol) or CBD is a chemical found in cannabis plants that does not produce a “high.” More info: Cannabis plants can produce more than 100 different types of cannabinoids, a type of chemical that reacts with receptors in the brain. The two most common cannabinoids found in medical marijuana are THC (delta-9-tetrahydrocannabinol) and CBD (cannabidiol). THC is responsible for producing the mental and physical effects of medical marijuana. CBD has many of the same therapeutic qualities as THC, but without psychoactive effects. (For even more info, read our report called “Weed 101: How and why patients use medical marijuana.”) …

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Defining “good” health care: 2 new studies reveal patient perspectives

Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define “good” care. Here’s the full scoop… Poll results: Good care is harder to get for some conditions Last month, 2,559 PatientsLikeMe members took part in a 6-question poll about doctor-patient relationship and what it means to get “good care.” The results suggest that patients with certain conditions, especially those living with fibromyalgia, PTSD and MDD, are less satisfied with their care. The poll also found that patients with these conditions are less likely to: Believe their provider has fully explained treatment options. Just 47% of fibromyalgia and PTSD patients and 53% of MDD patients agree their provider has done so, compared to 63% of patients living with ALS, MS and Parkinson’s disease. Report that they are receiving the best possible health care for their condition. Only 40% of fibromyalgia patients, 49% of PTSD patients and 45% of MDD patients believe they are receiving the best possible care, …

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“What do you mean I can’t bring my service animal in?” Member Craig talks life with fibromyalgia and service dogs.

Craig Braquet (woofhound) is living with fibromyalgia and severe degenerative disc disease, the result of a multi-car accident in 1979. We first introduced Craig when he joined the 2015-2016 PatientsLikeMe Team of Advisors, but today we introduce his dogs, Luna, Oliver and Dakota (check out their cameo in Craig’s recent #MoreThan video). See what Craig has to say about training his own service dogs, taking them into public places, and how they’ve helped him manage his condition. Craig with his service dogs Luna (left) and Oliver (right). Finding motivation to “get out of bed and rejoin society” “Luna is where we began my journey with personal service animals,” Craig says. Luna, a Great Dane, is now retired from being a service animal, though she’s still one of Craig’s closest companions. “Before Luna, I stayed at home, my pain levels were more than I could handle. I spent most of my days sleeping, trying to heal my body from the stresses of constant pain, my illness had overshadowed me.” Craig says Luna gave him a new purpose in life, and he found that training her to be a balance and stability service animal gave him the motivation to “get out of bed and …

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Let’s make fibromyalgia visible today

“I get so angry when friends come over to visit, after I haven’t been able to get out of the house for a month, and tell me how good I look. Or the idiots who ask you how you got the handicapped parking tag when you look so healthy. People just don’t see how difficult this disease is.” -PatientsLikeMe member living with fibromyalgia “I am so tired of the ‘but you don’t look sick’ comments.” -PatientsLikeMe member with fibromyalgia “I feel like I shouldn’t talk about it because I don’t expect it will make a positive impact on me if I do.” -PatientsLikeMe member with fibromyalgia This is the reality for those living with fibromyalgia – and since May 12 is Fibromyalgia Awareness Day, the fibro community is rallying to make this condition visible. The National Fibromyalgia Association has reported that it is one of the most common chronic pain conditions in the United States, affecting an estimated 10 million adults, with around 75%-90% of the people living with fibromyalgia being women. Because fibromyalgia is an invisible illness, explaining it to others can be even more difficult. That’s why 2015-2016 Team of Advisors member Craig (woofhound), who is living with …

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Meet Lindsay from the PatientsLikeMe Team of Advisors

  Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others.  Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others. What gives you the greatest joy and puts a smile on your face? There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning! What has …

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PatientsLikeMe Welcomes Next Patient Team of Advisors

  CAMBRIDGE, Mass, November 14, 2016—PatientsLikeMe has named 11 members to its patients-only 2016–2017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners. “Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.” More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington. John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and …

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Patients as Partners: Doug on learning about himself through others

Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and find out how Steve inspired him to look inward and re-evaluate what’s important: “I’m electing to dethrone the disease and reassert a part of my former self.” Steve can barely move. Wants to, but he can’t. A burly, silver-bearded, former long-haul trucker, he lives in the senior citizen one-bedrooms next door. Had to throw in the towel several years ago when inexplicable, undiagnosed joint pain made it impossible for him to drive safely. Retired early, Steve lives on a carefully-measured monthly Social Security payout. He knows enough to call what he’s got “fibromyalgia,” and he’s tried to get help for it in our rural, medically-underserved corner of California desert, but he simply doesn’t have the means. Even after Obamacare. Every day, he shuffles out his front door, gingerly lowers himself into the folding chair outside his apartment entrance, and chats with passersby. All day. Won’t …

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Patients as Partners: An open letter from Craig to the “normals”

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes, we can bring about more compassion and understanding for patients. Below, Craig illustrates the need for open, honest partnerships with “normals” in an open letter, dispelling some misconceptions and vividly describing a day in the life of someone with fibromyalgia. What You Don’t Know About Your Friend’s Fibromyalgia So, someone you know (and possibly love) has told you they have fibromyalgia. With all of the medical information available today and A-list celebrities like Morgan Freeman announcing that they have it, most people have an idea of what this disorder is. I’d like to help with that understanding by telling you about the things you probably DON’T know about this very complex condition. Let’s begin by listing some of the famous people you may know who have fibro. Susan Flannery, Sinead O’Conner, Michael James Hastings, Frances Winfield Bremer, Morgan Freeman, Mary McDonough, Janeane Garofalo and AJ …

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Food for thought: healthy eating in 2016

A lot of people talk about smartening up their diets at the start of a new year. Over the past month, many PatientsLikeMe members have shared eating habits they’re going to keep and the new ones they’d like to start in 2016 — everything from cutting down on salt to going vegan. Take a look at what some people said below: “I’m not changing my eating patterns. I eat anything I want, just in moderation. I shy away from processed food, limit my salt intake and eat lots of fruits and vegies. I try and snack healthy, although this is hard.” -MS member   “I am going to be taking a complete overall look at my diet, as I don’t look after myself anymore, and I am going to try and get back on track!” -Fibromyalgia member “My diet excludes all animal products. That means no dairy, no eggs, and no meat or fish. I eat a wide variety of grains, legumes, vegetables and fruit. I avoid processed sugars and use coconut sugar or agave, for example. I made these changes approximately three years ago. I am healthier because of my vegan diet.” -Major Depressive Disorder member “I’ve been gluten free since …

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Meet Craig from the PatientsLikeMe Team of Advisors

We recently sat down with Craig, one of your 2015-2016 PatientsLikeMe Team of Advisors. Craig is living with fibromyalgia and severe degenerative disc disease, the result of a serious car accident in 1978. Craig is active on PatientsLikeMe and other online communities, where he adds his voice to discussions about chronic pain, healthy living and LGBTQ issues. He’s also written essays to raise awareness about life with fibromyalgia, a “hidden disability” he feels is commonly misunderstood. In this interview, Craig shares how important it is to have a community he can turn to for support and to remind him he’s not alone. What gives you the greatest joy and puts a smile on your face? It’s a mixture of both smiles and sadness when I think of my greatest joys. I tragically lost my mother in a traffic accident when I was 19 years old. We had started a conversation the week before where I was trying to “come out” to her (that I was gay). I procrastinated and when she asked if I was, I said I wasn’t sure, that I was working on that answer, and that I’d tell her more next week. Well that conversation never happened, …

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