Fibromyalgia

PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care. PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care. More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis …

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Food for thought: August (diet) edition

Many mothers have told their children “you are what you eat,” but some PatientsLikeMe members have taken that idea one step further and are using their diets to try and manage the symptoms of their conditions. People have been sharing about everything from gluten-free to vegan diets – check out what some people said in the conversations below: “I truly believe, after 50+ years of fibromyalgia symptoms ranging from pain and depression to migraines, irritable bowel, and low thyroid, that the biggest help of all is to watch my diet, get in lots of fruits and vegetables, and limit sugar and alcohol. I supplement my fruits and veg intake with a whole food based supplement. This has allowed me to reduce medication to thyroid supplementation and a very occasional sumatriptan.” -Fibromyalgia member on her “detox” diet “My diet is greens, beans, nuts and seeds. Favorites are kale, spinach, cucumbers, tomatoes, carrots, celery, cauliflower, broccoli, sweet potatoes, black, pinto and kidney beans, lentils, black-eyed peas, cashews, almonds, peanuts and pistachios, flax and pumpkin seeds. I also have occasional sweet potatoes, apples, oranges and watermelon. Grains are consumed about once a week and are usually Farro or Quinoa.” -Diabetes II member on …

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Arthritis Awareness 101

You may have heard that arthritis affects the joints, but did you know that it’s an umbrella term used to describe over 100 medical conditions and diseases (known as rheumatic diseases)?1 Conditions that fall underneath forms of “arthritis” include rheumatoid arthritis, gout, lupus, and fibromyalgia. And the symptoms can vary depending on the type of arthritis and the person living with the condition. May is dedicated to raising awareness for arthritis (along with schizophrenia, lupus, CINDs, ALS…) – the people in the following video shared with the United States Congress what it’s like to live with arthritis: May is drawing to a close, but it’s not too late to share your story on social media through the #ArthritisAwarenessMonth and #ArthritisMonth hashtags. And if you or someone you know has been diagnosed with any form of arthritis, the Arthritis Foundation has put together a collection of resources for everything from pain management to treatment options. Don’t forget to visit the various arthritis communities on PatientsLikeMe – 7,488 people are sharing about living with rheumatoid arthritis, 4,795 with osteoarthritis and 1,527 with psoriatic arthritis. Share this post on Twitter and help spread the word for arthritis. 1 https://www.rheumatology.org/about/arthritismonth.asp

Coming together for immunological and neurological health in May

If you follow PatientsLikeMe on social media, you might have seen a few “Pop Quiz Tuesday” posts. Today, here’s a special pop quiz – what do fibromyalgia, myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have in common? The answer is that they are classified as Chronic Immunological and Neurological Diseases (CINDs). And since 1992, every May 12th has been recognized as International Awareness Day for CINDs. Today, in conjunction with Fibromyalgia Awareness Month, it’s time to recognize everyone living with a CIND. While fibromyalgia and ME/CFS are both CINDs, each is a little different. Check out some quick facts about each condition: Fibromyalgia1 Affects 5 million Americans over the age of 18, and the majority are women The cause of fibromyalgia is unknown Common symptoms include insomnia, headaches, pain and tingling in the hands and feet ME/CFS2 Affects between 836,000 to 2.5 million Americans The large majority of people living with ME/CFS have not been diagnosed There are five main symptoms of ME/CFS, as opposed to the more general symptoms of fibromyalgia: Profound fatigue that impairs carrying out normal daily activities Unrefreshing sleep Cognitive impairment Symptoms that worsen when a person stands up Symptoms that worsen after exerting any …

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Getting to know our Team of Advisors – Karla

This past Monday on the blog, Emile shared about her fibromyalgia and what being a part of the PatientsLikeMe Team of Advisors means to her, including how she hopes to help doctors understand that patients need to be treated as individuals, rather than just disease names. Today, we’re featuring Karla. She’s also a member of the Team of Advisors living with fibromyalgia as well. Read below to learn Karla’s views on patient-centeredness, open communication and healthcare in a rural community. About Karla (aka kam-turtle) Karla refers to herself as a Southern Gram, who tries not to let her fibromyalgia get in the way of having fun with her grandkids. Karla served as president of a community college prior to retiring from full-time employment in 2010. She has led volunteer boards and fundraising groups, worked in public relations and advertising, and actively worked in a variety of roles in her church. She continues to work part-time as a grant writer, researcher, and owner of a chicken farm where she has a rooster named Handsome. 🙂 After spending a long time finding treatments that worked for her, Karla is passionate about helping others shorten the time between diagnosis and condition management, and she would like there …

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Getting to know our Team of Advisors – Emilie

If you’ve been following the blog, you’ve already met three members of the PatientsLikeMe Team of Advisors – Dana who is living with bipolar II, Lisa who is living with Parkinson’s and Becky who is living with epilepsy. Now, we’d like to introduce Emilie, a social worker and therapist who is living with Sjogren’s Syndrome and fibromyalgia. About Emilie (aka Memmie) Emilie is a Licensed Clinical Social Worker (LCSW) who works with children living with chronic illnesses and their families. She’s also been a therapist for both children and adults with chronic illness and in her work has developed a pediatric diabetes pain management program. Emilie herself has an autoimmune disease, fibromyalgia — and recently had to resign from this work that she loves due to the pain, fatigue, and subsequent emotional strain. She hopes to return to doing similar work once her medical issues are more manageable. Emilie on patient centeredness Emilie believes the question should be asked, “what are the ways your health care provider(s) could be more helpful to you?” to better our understanding of patient centeredness. She believes that doctors need to listen to and respect that their patients know their bodies best. Emilie on being part …

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Food for Thought: September weather and autumn recipes

Around the PatientsLikeMe office in Boston, the leaves are beginning to turn red, yellow, orange and gold, and everyone is starting to bundle up as the weather gets colder. In turn, PatientsLikeMe members have been sharing their favorite fall recipes and some thoughts about how the weather impacts the conditions they live with. Here’s what some have been saying:   “I love fall. Cooler temps, brisk breezes, my favorite earth colors and long-sleeved tops with soft vests. The more clothes I put on, the better I feel. [I made] creamed chicken and peas with garlic toast. One of my favorites I only make when the husband is off visiting family.” -Fibromyalgia member “I love recipes from Real Simple because they tend to be very…ah…simple. This is a crock pot one (yay!) and the potatoes are totally unnecessary if you are avoiding them.” -Mood member “I will be making sautéed Kobach squash w/ onions, broccoli and some Jasmine rice. Spices turmeric, paprika, salt and pepper. Maybe a little scrambled eggs added.” -Fibromyalgia member Share this post on Twitter and help spread the word. And don’t forget to check out our other Food for Thought posts if you missed them.

“In my own words” – PatientsLikeMe member Tam writes about (your) life with MS

If you were living with multiple sclerosis (MS) and someone said to you, “Well I get tired too, but I don’t go lay down in bed all day,” how would you respond? Invisible symptoms like pain and fatigue are hard to describe to someone who doesn’t get it or isn’t living with MS. But to try and help everyone better understand, PatientsLikeMe member Tam recently wrote a description of what life might be like for you if MS was a part of your day. Read her post below. The private, invisible pain of MS Let me take you on a journey; on my journey. I’m asking for a few moments of your time to take a glimpse at what I experience each moment of each day. I was given an example, which I will start with. We’ll begin at 8am on a Monday morning by clipping a clothespin on the end of each of your fingers. Not so bad, you may be thinking. Shower, do dishes, get dressed (fasten a bra, zip and button your pants, tie your shoes), make coffee, pick up a medication and take just the one pill you need to take … do all the normal things …

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Food for thought: June edition

For the past couple months, we’ve been sharing about different members’ favorite foods and recipes, and we’re keeping it going with multiple sclerosis members discussing the pros and cons of smoothies, ALS patients talking about getting sleepy after steak, and the fibromyalgia community sharing about cutting foods out of their diets. MS forum thread: Nutrition questions anyone? “And on the other hand, some people, (myself, for instance) have resistance to green smoothies…” “We love green smoothies. I think they taste best if you use 1/3 green stuff, 1/3 banana, and 1/3 other fruit, like berries, peaches, etc.” “I can understand the value of smoothies, which have all the fiber blended into the drink, but juice? Not only no, but hell no.” ALS forum thread: Could a steak make you lethargic? “I get really tired after chewing. Steak would knock me out!”  “My hubby has always asked for steak dinners since his dx. He says it makes him feel more energetic.” “Try really small bites and/or mix with mashed potatoes.” Fibromyalgia forum thread: gluten/sugar/alcohol free “I have cut out soda and now drink seltzer water. (I like the bubbles).” “I had to cut out the alcohol, sugar, red meat and a gluten …

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Food for thought: May edition

Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or cold if you like a good scoop of ice cream, forum threads to share. (If you follow our blog, that hot/cold play just made you smile… again. ☺) ALS forum thread: tips on how to gain weight while eating healthy? “… the bottom line is that I need to put on weight. I eat organic foods when possible, no sugar and a little if any wheat.” “I rely on high calorie fruit (but all are good) such as bananas, mangoes, blueberries, etc. I just blend them up (using one fruit) to make smoothies.”  “You might try using Ensure, Boost or other nutritional food extras.”  Idiopathic pulmonary fibrosis forum thread: Primal blueprint “The basic premise is that we should be eating like our pre-agricultural ancestors and eliminate grains and sugars from our diet. I need to lose weight to get on the transplant list…” “And it …

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