Get Advice and Support From Other Fibromyalgia Patients
By Mary Gustafson. A fibromyalgia diagnosis raises as many questions as it answers, leaving sufferers feeling frustrated and alone. But support is as close as the nearest fibro blog. Here, top bloggers with the condition share their best tips for feeling healthy and hopeful.
When Felicia, 28, was diagnosed with fibromyalgia in 2001, there was little information available to patients.
She found medical articles in magazines, but not first-hand advice from others going through the same experiences. So she started a blog to support and educate fibromyalgia sufferers.
Besides blogging about relatable topics like pain, fibro fog and fatigue, she provides a list of household products for fibro sufferers, from braces and orthotic slippers to bottle openers and veggie peelers.
Felicia (who doesn’t reveal her last name or image to protect her privacy) is part of a growing community of fibromyalgia bloggers, for whom sharing experiences is a valuable treatment tool. Many expand their reach through Facebook and
“Any kind of experience, good or bad, is improved when it’s shared,” says Nora Ishibashi, Ph.D., a Chicago-based clinical psychotherapist in private practice. “When we’re understood, it’s easier to deal with problems.”
Unlike traditional support groups, blogs offer immediate gratification and a range of experiences.
If you’re frustrated, sad or so sore you can barely move, empathy and advice are only a few clicks away.
But blogs shouldn’t replace professional medical care. Talk to your doctor about managing your physical and mental symptoms of fibromyalgia.
Here, we asked top fibro bloggers for their best tips for dealing with the condition. Plus, we introduce you to the women behind the words and tell you how to find them online.
Bloggers say: Sharing personal anecdotes can help you connect to others with the same condition while exploring your own feelings too.Dannette Rusnak, who was diagnosed with fibromyalgia in 1997 after enduring a head trauma, created www.fibrohaven.com to better understand her emotions during a difficult period.Her blog gets several thousand visitors a month. Responses from the fibro community not only raised her spirits but gave her new inspiration.“I have a sense of responsibility to improve my health – not just for me, but also for everyone who reads [what I write],” Rusnak says.
Her blog encourages others to open up: “We’re all so connected in so many ways, and if we don’t share or talk about it, how would we know?”
Experts say: Online support groups, like blogs, offer an outlet for the frustration many fibromyalgia sufferers feel, Ishibashi says.
“The person who can understand a dysfunction best is someone who has the same experience.”
Bloggers say: Regular, gentle exercise makes it easier to manage fibromyalgia symptoms.“I do yoga and walk my dogs every day,” Tyler says.“If I skip more than a day or two, my pain is worse. I then get so stiff I can barely move or stretch.”Tyler was diagnosed with fibromyalgia in 2006 after suffering a bout of chronic fatigue syndrome, which she and her doctors think stemmed from a viral infection.
In addition to her blog, Tyler maintains a Facebook support group called The Fibromyalgia Fun House.
Kimberley Linstruth-Beckom of the Fibro and Fabulous blog, who was diagnosed in 2005, advises to keep activity low-impact to avoid injury.
“I’m mindful of my limits,” she says. “I practice gentle yoga, even if it’s only five minutes a day. Stretching sore muscles in my back and neck really helps keep flares at bay.”
The first, The Fibro Hand, was about her journey to being diagnosed with the condition. Her second, about fibromyalgia and relationships, is titled Fibromyalgia and Sex Can Be a Pain in the Neck. She also published a spin-off of her blog, called Fibro and Fabulous: The Book.
Experts say: Yoga is a good choice, says Ishibashi, because it can be modified to suit each fibro patient’s needs.Many sufferers develop muscle tension as a defense against physical pain, says Ishibashi. “The tension can become habitual and lead to uncomfortable, unnatural positions. Yoga restores mobility and flexibility.”Plus, yoga doesn’t stress bones and joints the way high-impact activities – like jogging and aerobics – can.
The practice offers emotional benefits for fibro sufferers too.
“Moving your body through a range of motion releases tension in your mind,” Ishibashi says.
“Often, yoga is taught as a way to make friends with your body, learning what it can do, and gently encouraging it to do a bit more.”
Bloggers say: “If someone regularly hurts your feelings, stresses you out, belittles you or gets angry about how you’ve had to change your life, they’re only going to make you worse,” says Adrienne Dellwo, who runs About.com’s Fibromyalgia and Chronic Fatigue Syndrome channel, including its blog, forum and weekly newsletter, which has thousands of subscribers.“Of course, we’re stuck with some people, but you can limit your contact,” she adds.Experts say: Depression is prevalent among patients with fibromyalgia, says Patrick Wood, M.D., a fibromyalgia specialist who practices in Mississippi.It can arise as a co-existing condition or as a result of struggles with symptoms.
Avoiding exposure to negative people and situations can help ward off feelings of sadness or anger.
Bloggers say: Fibromyalgia’s mysterious aches may seem like they’re taking over your life.But bloggers say it’s possible to regain control.“I tell anyone who will listen that life is a beautiful, painful and exquisite condition that only leads where you take it,” Tyler says.Experts say: If you’re recently diagnosed, it may take time to feel like your pre-fibro self, Ishibashi says.
Studies have shown that people “revert to their normal feeling of happiness or unhappiness within a year of even a very major event,” she says.
Bloggers say: Food sensitivities, such as excessive swelling or irritable bowel syndrome, are common with fibromyalgia.But keeping track of what triggers your ailments can help you avoid them.“Write down your reactions to foods when you eat them. Do you feel tired or sluggish? Did you become bloated or swell up? Were you feeling more pain than usual?” says Linstruth-Beckom.By tracking foods she ate, Linstruth-Beckom discovered that carbonated beverages and prepared foods with MSG and other additives made her hands and ankles swell. White pastas and bread left her tired and sore the next day.
Experts say: Reactions like Linstruth-Beckom’s aren’t uncommon among fibro patients, says Christine Gerbstadt, M.D., R.D., a doctor and registered dietitian based in Maryland.
“Many highly processed foods contain ingredients – such as fatty acids, fructose and excessive calories – that are pro-inflammatory,” she says. “Any food that promotes inflammation will exacerbate fibro symptoms.”
Bloggers say: Herbal medicine, supplements, vitamins and regular trips to the chiropractor and acupuncturist can be important tools to battling fibromyalgia, according to the bloggers we interviewed.Rusnak, for example, regularly visits a holistic chiropractor to ease symptoms.Experts say: “Eastern, alternative and holistic practices triumph in those gray areas in which medicine fails,” says Robin Mayfield, D. C., an Austin, Texas, chiropractor.When treating fibromyalgia patients, she uses chiropractic adjustments, acupuncture and herbal supplements to address the digestive, immune-system and emotional issues common with the condition.
“Any relief in these areas will improve the body overall,” she says.
Described by Hippocrates in ancient Greece, fibromyalgia is one of the world’s oldest medical mysteries. The disease – a complex illness marked by chronic muscle, tendon and ligament pain, fatigue and multiple tender points on the body – affects about 2% percent of Americans, most of them women.