Fibromyalgia 101: Where to Find Reliable Information Online
Take two steps in the shoes of someone suffering from fibromyalgia and you’ll quickly realize it can be a painful, lonely road filled with more questions than answers. Fibromyalgia is often referred to as an invisible illness because the symptoms usually aren’t readily apparent to an outside observer. These symptoms include widespread pain, chronic fatigue, sleep problems, cognitive problems (i.e. memory loss or difficulty focusing), mood issues and much, much more.
Facing these symptoms and the uncertainties of life with an invisible illness can be overwhelming – as those of us with fibromyalgia can readily attest to. Knowing where to find the best information about fibromyalgia as well as finding avenues to connect with fellow fibro warriors can make a world of difference as you face the journey ahead. With that in mind, we’ve pulled together some of the best fibromyalgia resources, blogs and support groups on the Internet today.
FIBROMYALGIA ASSOCIATIONS & ORGANIZATIONS
The National Fibromyalgia Association (NFA) is a non-profit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. It was founded in 1997 by two women suffering from fibromyalgia who, after meeting in an online fibromyalgia chat group, recognized a need for a more reliable source of information about the condition.
NFA’s website provides valuable information and resources for those coping with fibromyalgia. Membership with the NFA is free and grants you access to various tools and perks to help you on your journey with fibromyalgia.
The National Fibromyalgia and Chronic Pain Association is a non-profit, global community whose mission is to unite patients, policy makers, and healthcare, medical and scientific communities to transform lives through visionary support, advocacy, research and education of fibromyalgia and chronic pain illnesses. Their website provides a myriad of free resources for people coping with fibromyalgia and chronic pain.
The National Fibromyalgia & Chronic Pain Association has two different membership levels. Free membership gives you access to the online version of their magazine, Fibromyalgia & Chronic Pain LIFE. You also get a free monthly newsletter as well as e-alerts about any important news that could affect you. For $50/year, the paid membership offers all the benefits of a free membership plus a 4-issue gift subscription of quarterly print copy of Fibromyalgia & Chronic Pain LIFE magazine. You also gain access to member-only website resources (i.e. webinars & podcasts). Your $50 membership fee is actually considered a donation and is tax deductible
The Fibromyalgia Network offers free articles and information about fibromyalgia. The resources available on the Fibromyalgia Network’s website range from articles about fibromyalgia basics to specific tips and best practices for coping with fibromyalgia (and everything in between). A few of our favorite resources on the Fibromyalgia Network website include their treatment survey to help you determine how your treatment measures up, the daily living section (which provides tips for everyday coping) and the disability section (which outlines how to pursue Social Security Disability benefits).
The Fibro Center is another great website with tools and information to help you understand your symptoms and get the most out of your treatment plan. One of the valuable (and FREE) tools they have is a Fibromyalgia Pain Assessment Tool. The assessment consists of 12 questions to help you better analyze and understand the pain you’re experiencing. At the end of the assessment, you can even print off your results so that you can take them to your next appointment to discuss them with your doctor.
Fibromyalgia and chronic pain blogger Julie Ryan gives readers an honest glimpse into life with a chronic illness with her compelling blog, Counting My Spoons. The title of her blog is a reference to the famous Spoon Theory often used to describe life with a chronic illness.
For those suffering from a chronic illness – be it fibromyalgia, chronic fatigue syndrome, lupus, lyme disease, migraines or any other chronic condition – Julie’s blog is full of worthwhile tips and advice on how to cope with your illness in a positive way. Combining her incredible writing talent with her life experiences suffering from multiple chronic illnesses (including fibromyalgia), Julie is able to put into words what many of us wish we could articulate.
In 1997 – at the age of 25 – Jenni (a.k.a. Chronic Babe) was diagnosed with fibromyalgia. Nearly a decade later, she dreamed up the idea of creating an online gathering place for younger women suffering from chronic illness and her blog, ChronicBabe.com was born. Her blog offers a fresh, humorous and frank perspective on life with chronic pain.
One of our favorite installments on the blog is AWAP Wednesdays (stands for: As Well As Possible) – where Jenni addresses various aspects of life with a chronic illness and how she handles them. Jenni video blogs her AWAP Wednesdays and posts them on her YouTube channel.
The team at FibroDaily.com provides a wealth of information and weekly articles on anything and everything related to fibromyalgia. Their goal is to bring together the latest fibro news, research, and information all in one place to make your search for information easier. From symptoms and treatments to specific tips for men and women, you will find useful and up to date information that can help you as you cope with your fibromyalgia.
FACEBOOK SUPPORT GROUPS
The Fibromyalgia Support Group on Facebook is an open group where fellow fibro warriors can gather to share stories, ask questions and offer support. With over 53k members, there is a wealth of knowledge and experience from fellow fibromyalgia sufferers. Whether you’ve just recently been diagnosed with fibromyalgia and are looking for answers or you’re a fibro veteran just looking to connect with others, the Fibromyalgia Support Group
I Have Fibromyalgia But Fibromyalgia Doesn’t Have Me (Support Group)
For those looking for a closed group, this support group is a great place to go. To join the group, you simply go to the page and request to join. Once one of the group or page admins approves your request, you can post within the group. The major benefit of a closed group is that your posts to the group won’t be visible to your Facebook friends or followers (unless they’re also members of the group). Many fibromyalgia sufferers may be hesitant about asking questions or sharing information if their Facebook friends can see it – so this group offers a way to do so with a little more privacy.
Learning how to cope with a chronic illness like fibromyalgia is no easy task. Having access to reliable information and the ability to connect with fellow fibromyalgia sufferers can be a lifesaver for anyone struggling to cope with the many symptoms and uncertainties of fibromyalgia. The websites, blogs and support groups above are a great place to start as you begin building your knowledge and expanding your network of fibro friends.
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