Fibromyalgia

Recapping with our Team of Advisors!

Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team is wrapping up their year-long term as advisors, we wanted to make sure we update the community on all the hard work they’ve done on your behalf! First Ever In-Person Patient Summit in Cambridge Your team of patient advisors travelled from all over the country to join us for 2 days here in Cambridge. They met with PatientsLikeMe staff, got a tour of the offices and began their collaboration together as a team! Blog Series The advisors have also been connecting with the broader community as part of an ongoing series here on the blog! This is an impressive group and we hope you’ll read through to learn more about the team.  Some of the interviews featured so far include profiles on Becky, Lisa, Dana, Emilie, Karla, Deb, Amy, Steve, Charles, Letitia and Kitty. If you haven’t had the chance to read their stories and what they’re passionate about yet, feel …

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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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2014 recap – a year of sharing in the PatientsLikeMe community

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes. A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015. Team of Advisors In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015. Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and …

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Making fibromyalgia visible this May

The National Fibromyalgia and Chronic Pain Association (NfmCPA) is recognizing Fibromyalgia Awareness Month with an awesome theme – “C.A.R.E. & Make Fibromyalgia Visible.” C.A.R.E. stands for Contribute, Advocate, participate in Research, and Educate others about fibromyalgia, and that’s exactly what’s going on throughout May. Fibromyalgia (commonly shortened to “fibro”) causes widespread body pain or aching muscles – myalgia – that can be localized to specific areas called tender points. Other symptoms include tingling, numbness, fatigue and sleep disturbances.1 In most cases, fibromyalgia is limited to women, but men and children can also be affected – it’s estimated that 3% to 6% of the world’s population has the condition, and about 1 in 50 Americans are living with fibro at any given time.2 3 So how can you help raise awareness for fibromyalgia in May? Participate in the NfmCPA’s Fibromyalgia Awareness Day on May 12 Find a Fibromyalgia Awareness Month event in your home state Share your personal pledge to care about fibromyalgia Read PatientsLikeMe fibro member DarkAuburn’s blog interview and get the patient perspective The fibro community on PatientsLikeMe is one of the largest on the site, and it’s growing by the day – this time last year, there were about 30,000 in the …

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Healthy meal on table

Food for Thought: Recipes, Diets and Tips

What’s for dinner? Does this phrase haunt you the same way it does us? It is hard to come up with something to eat for every meal each day, especially if you have dietary restrictions due to your condition. If you feel like you are stuck in a meal rut, the PatientsLikeMe community is here to offer up some healthy and easy recipes! Everyone’s got a favorite dish (pizza is one of ours), and many PatientsLikeMe members like to share their favorites across our condition-specific forums. So we decided to create a mini virtual cookbook by highlighting some of the hottest – or maybe the coolest, if you like gazpacho – conversations from PLM. Get inspired for your next meal by reading through what people are saying in different condition communities. Fibromyalgia forum thread: What did you make for dinner tonight? “Leftover sage and rosemary soup – I added mushrooms and scrambled egg batter. Stirred until cooked, added sea salt and pepper. Yummy!” If you are looking to warm up and calm down with an easy soup recipe, try this protein-rich lentil soup from the USDA’s healthy recipe finder. “I LOVE to make crockpot lamb shanks and salad. The crockpot …

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A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn

Did you know we now have more than 30,000 members in our fibromyalgia community?  In honor of this major milestone, we decided to interview DarkAuburn, who joined in 2009.  She’s a three-star member, which means she’s earned our top star rating for sharing complete, in-depth information about her fibromyalgia symptoms, treatments, quality of life and much more.  In addition, she has opted for a public profile, which means that anyone on the Internet (whether a PatientsLikeMe member or not) can learn from her detailed condition history.  Check out our interview with this veteran member below. 1. Tell us a little about the PatientsLikeMe fibromyalgia community. I was not expecting much when I found the site. I thought it would be more of an informational, non-involvement sort of site. I was surprised, as in a good surprise. I don’t know many people where I live that have fibromyalgia, and I didn’t realize how welcoming this site would be. I found people who, like me, wanted answers. The sharing of information and support was a nice thing to find. 2. What’s it like to have access to the experiences and data of tens of thousands of other fibromyalgia patients? It’s staggering. I …

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Coping with Changes in Physical Appearance

When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful? Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues: Using attractive scarves or hats to cover thinning hair or bald spots Experimenting with different cosmetics to see what works best Treating yourself to a spa manicure and pedicure as a pick-me-up Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses Soaking in a scented Epsom salt bath to ease pain and relax Consulting with a hair stylist about better styles for thinning hair Using gentle, non-drying facial cleansers and lotions Switching to an …

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