Fibromyalgia: Common, but invisible illness often misunderstood

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BOONE COUNTY - According to the Centers for Disease Control and Prevention, at least two percent of Americans suffer from fibromyalgia, a chronic illness "characterized by widespread pain, abnormal pain processing, sleep disturbance, fatigue and often psychological distress."

Its causes are largely unknown, but those with the condition say its effects are very real. 

"It hits me really hard with migraines, that's probably my biggest symptom," Samantha Bradley, 30, Boone County resident who was diagnosed with fibromyalgia a few years ago, said. "And then a lot of fog."

Bradley said issues with sleep have also taken a toll on her life. She said for her, sleep feels neither restful nor restorative. 

"It's like you're never recovering," she said. "I could sleep for a day and still be a zombie."

Dr. Celso Velazquez, a rheumatologist with MU Health Care, said new diagnostic criteria highlight not only pain, fatigue and non-restful sleep, but somatic symptoms like headaches, chest pain, abdominal symptoms, numbness and tingling. He said fibromyalgia is more common in women from 25-54 years old, but a common misconception is that it affects only that group. He said the condition impacts men, children and older adults. 

"We try to educate our patients and our medical students and our residents that this is a disease that can affect all ages and all genders, and you have to keep an eye out for it," Velazquez said. "Sometimes, when you don't fit the more common group of people that get fibromyalgia, then it can lead to a delay in the diagnosis sometimes."

Velazquez said he recommends a three-part plan for treating fibromyalgia in his patients. First, he said, patients must educate themselves and others about the condition. Second, he said patients need to incorporate an exercise routine. Finally, he said patients can take medications designed to treat fibromyalgia.

"I tell people it's like a three-legged stool, without the three of them you're not going to stay in place," Velazquez said. "Medications are useful, but oftentimes what helps the most is the first two options."

Bradley said she often encounters skepticism about her condition because she looks outwardly healthy. 

"It seems a lot of people still don't think it's real," Bradley said. "I try to explain: 'I know I look fine, I know that yesterday I was in great spirits and things were wonderful, but today I'm paying for that day.'"  

Velazquez said the most common misconception with fibromyalgia is that it doesn't exist.

"The most common misconception is that fibromyalgia is not a real disease," Velazquez said. "People say 'it's just in your head, you're just pretending, I can't believe you feel like this, I can't believe this is real.' That's the most important misconception." 

Bradley said people who don't think the condition is real should analyze the person before dismissing his or her illness.

"I know there are people who fabricate symptoms," she said. "Before you say something like that to someone, you should analyze who you think they are as a person, do you think that that person would just blatantly lie about passing up things that are extremely fun or profitable? Why would anyone want to do that?"

Bradley said the condition has distanced her from a lot of people. She said she wishes people were more understanding about the condition. 

"The hardest part is not being able to just go and do things with people, I've become really reclusive," Bradley said. "It's hard to pretend like I'm okay all the time and put on a smile."

Despite the illness's effects on her life, Bradley said she works a full-time job. She said being able to sit down in an office helps her do her job well. She said her employer affords her the ability to work from home if she needs to, but she said luckily, she hasn't had to yet. 

"My supervisor knows I'm going through this. She's very understanding and sympathetic to it," Bradley said. "I've had jobs where after a while they think I'm using it to get out of work, it's like 'no, trust me, I need that money, I need to pay the bills, I have prescriptions to pick up.'"

Velazquez said despite misconceptions about patients with fibromyalgia, most are able to work and do well if they follow treatment. 

"We have many patients who are professionals who have fibromyalgia, or people who work full-time with fibromyalgia," he said. "They do very well, as long as they get treatment and they follow treatment."

Bradley said she's found support through friends, family and online resources. She said she is a part of multiple Facebook groups for people living with fibromyalgia and is able to share tips and support with others around the world who live with the illness. She also said talking about the illness through social media helps her educate people who don't have fibromyalgia. 

"It's funny how much more people are learning about it because I talk about it," she said. "Some that were skeptical before. It seems like they're slowly coming around or they believe me more."

She said using social media helps her show the efforts she's making in her life.

"They see me trying, not that I'm just sitting around and wanting attention, they see me wanting to be out there and trying my best," she said. "I feel like they understand that it's not made up, that I'm pushing it to the limit sometimes." 

Velazquez said online resources are an important aspect of patient education. But, he cautioned some websites may not offer accurate information.

"There's just a lot of stuff online that's not reputable, and you should try to avoid," Velazquez said.

Bradley said she used to live a much more active life but tries to stay as active as she can, which she said helps minimize her symptoms. 

"My goal is to learn to swim," Bradley said. "I feel like it would be a good form of activity for me that won't put a lot of pressure on my body." 

Bradley said ultimately, people with invisible illnesses need to know they have support.

"They need to know that someone believes them because that really is the number one, for me it is," she said. "I don't think I could imagine being by myself in all of this." 

KOMU 8 News reached out to viewers, asking them to share their experiences with fibromyalgia and got a large response. Here's some of what respondents had to say. 

Amber Sears, Columbia:

"I struggled with sleep issues, chronic back pain around my neck, shoulders, hips for years. Have done multiple rounds of physical therapy, massage, acupuncture, and some medications. For me, it's been a challenge, but I have remained pretty active because I feel like it helps. "

Hayley Neebe, Columbia: 

"You end up seeing doctors more often than you see some of your friends and family, because until you get to the right 'cocktail' of medication that helps you do even the most normal things, you're constantly changing medications and dosages. There are some people out there that call you 'drug-seeking', when you really don't want to be polluting your body any more, but if it can get you to a point of being able to do everyday things...

And the looks people give you because you have a handicap license plate, but you're only in your twenties and you look normal, you look healthy. Sometimes, it's more than looks, and you get told that 'you should be ashamed of yourself, taking away a parking spot from someone who really needs it' or accused of taking a much older family member's car just for the 'privilege' of having to park closer. Living with an invisible illness is always a crap-shoot of whether someone will 'see' it, 'see' past it, or even 'see' that you're still you, that you're not just your illness."