Photo Credit: Courtesy of Monica Chuhna
About four years ago, Monica Chuhna started to have difficulty sleeping. She experienced numbness and tingling in her hands, feet and face, but she didn’t know what was wrong. She was tested for arthritis, diabetes, and other conditions, and even feared that she might have a brain tumor. As test after test came back negative, her symptoms didn’t go away, and more symptoms appeared. “I’m actually a very healthy, happy person,” Chuhna says. “It was very frustrating because there were things that I wanted to do. I wanted to live life and enjoy being out, but I just didn’t have the energy to get out of bed.”
Getting the diagnosis
Chuhna’s sister, Dianne had been diagnosed with fibromyalgia following a car accident 18 years ago. The symptoms that Chuhna was experiencing were very similar to those Diane had gone through. “When she and I started talking about similar symptoms, I realized, perhaps I have fibromyalgia as well.”
When Chuhna spoke to her doctor about her suspicions, he listened to her symptoms and family history. He admitted that he probably wouldn’t have two years earlier, but he'd heard a lecture on fibromyalgia that had opened his eyes to the disease. He was able to refer Chuhna to a neurologist who gave her a diagnosis and set her on the path to treatment. “For the first time, I felt like someone really understood what I was experiencing and really was going to do everything that he could to help me.”
Chuhna and her doctors, including her neurologist and general physician, are still working on finding the treatment that’s best for her, but she says, “On a scale of one to ten, I put myself at an eight.” She has had a lot of success with complimentary treatments, such as stretching, exercise and relaxation techniques, but she and her doctors still haven’t narrowed down the most effective medications for her. While she finally has the energy to live her life and do the things she wants to do, she still has flare ups. “About twice a month it’s so bad that I don’t even want to get dressed,” she says.
Even with her flare ups, Chuhna finds the strength to make each day her best. She gathers strength from her work as a behavioral therapist, and feels blessed to have the support of friends and family. Sometimes she can’t do everything that she wants in any given day, but she makes the most of what she can do. “You make your list and you prioritize.”
A helping hand
The fibromyalgia community has also been an incredible source of strength for Chuhna. “I’m so proud to be part of the National Fibromyalgia Association, and trained now to be a leader against pain,” she says. “I feel like I can make a difference.” Chuhna was one of 65 people chosen from 14 different countries by the National Fibromyalgia Association to attend the Fourth International Leaders Against Pain conference. She is even thinking about starting a support group in her area.
It was Chuhna’s involvement in the community that opened her eyes to the actual prevalence and diversity of the disease. She’s had a chance to talk to many different women—and men—who have it, and has even made some dear friends. “I think of people with fibromyalgia as snowflakes or thumbprints, because none of them are exactly the same.”
Now she helps to spread awareness. “I would like to help people become more aware of fibromyalgia as a true diagnosis. It really exists. There are people living their lives who have fibromyalgia, and just because they look good doesn’t mean that they feel good.”
Chuhna also does her best to reach out to other fibromyalgia patients, and people who think they might have the disease, both through the National Fibromyalgia Association and outside of it. She says, “You need to change your mindset from being a victim to being a pro-active person who’s going to deal with whatever you get when you get up in the morning—whatever symptoms you have.”
Hope and a positive attitude are both very important to Chuhna, and she stresses their importance for other fibromyalgia patients, both diagnosed and undiagnosed. “Don’t give up, and don’t despair,” she says. “You will find help.”