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Living with Fibromyalgia

 Fibromyalgia  Symptoms. • Pain & tender points • Fatigue • Sleep problems • Concentration and memory problems, known as “fibro fog” • Anxiety or depression • Morning stiffness • Swelling • Numbness, and tingling in the hands, arms, feet and legs • Headaches • Irritable bowel syndrome • Problems with urination­­­­­­­ • Painful menstrual cramps • Restless legs syndromeHair stylist Natalie Hale was good at her job. She was fast and highly skilled. But one day, she realized she was slowing down. Instead of doing five men’s cuts in an hour, she was struggling to do two.

“I started hurting and needing a break,” she said. “Doing a full foil highlight, haircut, style-out all in less than two hours would take me two and a half to three and a half hours, and I wouldn’t be able to do anything else for hours at all.”

Hale went to the doctor and was diagnosed with fibromyalgia, a genetic disorder that attacks the nerves and muscles. Fibromyalgia affects 6-12 million people in the US according to the American Chronic Pain Association. According to the ACPA approximately 90 percent of fibromyalgia sufferers are female, anybody can be affected by this disorder. There currently is no cure as every case is drastically different. 

“It’s an invisible disease that effects the nerves, making you ache and hurt in ways you could never imagine,” she said. “You always feel like you have the flu on a good day — on a bad day, it’s a hundred times worse.”

Since being diagnosed six years ago, Hale has struggled to maintain a normal lifestyle. The disorder makes it highly difficult for her to hang out with friends or do normal everyday tasks, such as grocery shopping, because afterwards she is in extreme pain.

“How does it affect my day-to-day life? — I don’t have a life,” she said. “The moment I was diagnosed my life ceased to exist, at least the one I knew. I have more bad days than good, where I stay on my heating pad all day and all I can do is feed and take my dogs outside. (There are) days where I literally curl up into a ball and cry myself to sleep because the pain’s too hard.”

On Sundays, Hale likes to go bowling. This, however, can cause her to be in severe pain for the next couple of days.

“If I have a day where I’m out doing something fun like bowling, I lay in bed all the next to recuperate,” she said. “I have to push myself to do things like go to dinner with my husband. There’s a lot of anxiety, self-doubt and hate — no clue if I’ll be able to hug someone or if even a simple little touch will make me cringe because it hurts so much to be touched.

“My husband’s family talks badly about me and my illness when I’m not around. They’ve even tried to convince him to leave me because, ‘I’m just using him.’ The same goes for his friends. My friends have disappeared because you can’t count on me when plans are made, because I usually cancel or I’m sick. Or don’t want to go out (or) want them to come over where I’m comfortable.”

As well as depression and anxiety, other disorders that are caused by fibromyalgia. Insomnia, irritable bowel syndrome, interstitial cystitis and chronic fatigue syndrome are just a few issues linked to fibromyalgia.

“I personally suffer from chronic vertigo and migraines, as well as chronic fatigue syndrome, thoracic outlet syndrome, IBS, detreating vertebrae, MS,” Hale said. “Lately, I have also been waking up from my sleep screaming because I’m in so much pain.”

There is no cure for fibromyalgia, eating a healthy diet and maintaining a workout regimen can alleviate some symptoms. Fibromyalgia patients may also find different treatments through medications, therapy, alternative medicines and home remedies.

The disorder has become more high profile as celebrities such as Morgan Freeman, Lady Gaga and Selena Gomez have come out as having fibromyalgia. However, Hale said that a cure is unlikely because of the individuality of the symptoms.

  “Unless it puts me back behind a chair doing what I love doing, it wouldn’t matter,” she said.

Hale said she hopes people will take the time to learn about the disorder.

“Respect that person enough to ask and learn about their disease, don’t assume you know how it affects them even if you have the same thing,” she said. “Remember, we are all different.”

Category: Features