Fibromyalgia

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

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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

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“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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“My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory

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Meet Alex Bromley, a PatientsLikeMe software engineer who’s living with gastroesophageal reflux disease (GERD) and whose mother has fibromyalgia. He recently shared some insight on his and his mom’s conditions, his experiences as both a PatientsLikeMe employee and member and what he enjoys outside of work. What first drew you to working at PatientsLikeMe? Can you describe what you do in your role here?  A former employee and friend of mine, Joe, first introduced me to PatientsLikeMe in 2012. I decided to sign up as a patient and see what it was all about. When I saw that it included a robust fibromyalgia community, I was touched personally by the fact that someone like my mother, who has this mysterious condition, could talk and learn about it from other people. In my current role as a software engineer, I provide technical leadership to the PatientsLikeMe client team. We focus on supporting outside partnerships and collaborations, especially when it comes to custom software development. How does living with GERD affect you day to day? How do you use PatientsLikeMe as a patient? For a while, GERD started to change my life. I was no longer able to drink coffee, eat anything with tomatoes …

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Meet Lindsay from the PatientsLikeMe Team of Advisors

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  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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Top Rheumatoid Blogs of 2016

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Today is Rheumatoid Awareness Day and this year we wanted to share some of the top rheumatoid arthritis blogs that were included in Healthline’s 16 Best Rheumatoid Arthritis Blogs of 2016 list: Itis Stay up-to-date to learn about RA’s long-term effects and practical tips for living with RA. This blogger’s socks help treat the pain of RA and of Raynaud’s, (an autoimmune blood vessel dysfunction that sometimes co-occurs with RA). 2. All Flared Up This blog is about “living rather than wallowing” with RA. Check in to see how blogger Amanda is learning to understand her body and how it works with RA. 3. Arthritic Chick Before Arthritic Chick was finally diagnosed with RA, she suffered with pain in her hands, feet and ribs for years. On her blog, she shares the good days, and her bad days with openness, honesty and strength. 4. An Attitude of Gratitude Julie Faulds’ easygoing blog gives us a peek into her life with her family, thunder-phobic dog — and, her RA and fibromyalgia. Julie chooses an “attitude of gratitude” and her bad days make her good days better and brighter. Always an advocate of finding the positive, she suggests thinking of your RA downtime as a …

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

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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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Raising awareness for immunological and neurological health in May

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Earlier this year, we interviewed Team of Advisors member Craig, who’s living with fibromyalgia. Craig talked talked about the need to raise awareness for “hidden disabilities” like his condition. So today, we’re doing just that. May 12 is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs), which include fibromyalgia and myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). Those living with fibromyalgia or ME/CFS can have many symptoms that aren’t always easy to explain to others. Below, Craig describes a typical day for him in vivid detail: “Imagine that you’ve just worked one of the hardest days of your life. You are so tired that you can hardly walk. Just changing your clothes is almost more effort than you can handle. Every muscle in your body is aching and tired, and the slightest movement of some of them sends them into a tight painful spasm.”   But while fibromyalgia and ME/CFS are both chronic pain syndromes, they aren’t exactly the same. Patients living with ME/CFS experience five main symptoms1, 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 …

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Food for thought: healthy eating in 2016

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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

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

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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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