Fibromyalgia: The Long Road to Treatment

It took 21 years for her finally get the right diagnosis

Carolyn Bishop, now 38, first began having symptoms of fibromyalgia when she was 14. “It’s really hard to be an honor student,” she says, “if you go to school for eight hours a day and you come home exhausted, and you have five hours of homework.” She skipped classes and her grades suffered.

Her symptoms got worse as she grew older. When Bishop was pregnant with her son, she developed severe pain in her left shoulder blade. After he was born, she says, “The exhaustion was just complete. There were things I wanted to do with him and I couldn’t because I was tired.” She felt like a horrible mother. “When he was two years old I would sit him in front of the TV with a bowl of Cheerios and then I would lie down and fall asleep.”

When her daughter was born, the fatigue was diagnosed as postpartum depression. “My husband at the time would leave for work and come home 10 hours later, and I’d still be in the same spot in my pajamas.”

Bishop also experienced memory problems. One November, when filling out Christmas cards, she says, “I literally forgot who I was—what my name was, where I lived, what my address was. I didn’t know, and it scared the hell out of me. I was never so scared.”

Finding help, at last
Bishop just didn’t know what was wrong. Doctors continually attributed her symptoms to other conditions, like depression. They prescribed antidepressants, but those made Bishop feel worse.

“My doctor was just so adamant that it was depression,” she says. “That was the way he wanted to treat it. I never could make him see that I was not depressed. Treating my illness as depression wasn’t helping because that’s not what it was.”

Her own mindset wasn’t always helpful either. “I was one of the people who thought fibromyalgia didn’t exist,” says Bishop. “So I just didn’t attribute my symptoms to that, because, for me, it just wasn’t a possibility.”

It wasn’t until Bishop came across a tender point diagram while investigating another condition online that she began to see the possibility of the truth. But her doctor, who did not recognize fibromyalgia as real medical condition, couldn’t be convinced.

Bishop was desperate. After realizing that she suffered from pain in many of the places mapped out on the tender point diagram, she researched fibromyalgia on her own, and discovered a local doctor who was running a clinical study on fibromyalgia treatment. She signed up and was diagnosed during the evaluation. “I don’t even know how to explain how freeing it was to finally have a diagnosis,” she says. Bishop was 35 when she was finally diagnosed—21 years after the first signs of her fibromyalgia.

The study that Bishop participated in was for a newly-approved medication for fibromyalgia. For Bishop, it was extremely effective. “For the very first time in my life I didn’t have any pain. I just didn’t know what to do with that. It’s pretty amazing.”

Now, Bishop has her life back and can hardly remember the last time she had a flare up. The pain is gone and she can think clearly again. She’s active and she has a job. She home schools her daughter and takes care of two dogs and cat, and was even able to remodel her kitchen. “I went from having three good days a month, to having three bad days a year.”

Spreading the word
With her symptoms finally under control, Bishop tries to reach out to others interested in fibromyalgia by talking about her own experiences. “I get really frustrated with myself due to the way I used to be, with what I thought was real and what wasn’t,” she says. “I want people to be humble enough to realize that you’re not necessarily right—that there really is something wrong with this person who you’re saying is lazy.”

She stresses the importance of getting the right diagnosis. “If your doctor is not willing to learn about your condition, or is not able to treat it, find a different doctor. Keep looking. Find a care provider who knows how to treat your illness instead of trying to force a diagnosis on you that isn’t necessarily the right diagnosis.”

Bishop knows what it’s like to live with fibromyalgia—and what it’s like to live symptom free. “I tell people if you’re still having symptoms of something else, keep tweaking it until you get full relief of all of your symptoms. No one deserves to live in pain.”

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