Amy Richardson, a 30-year-old mom from Lido, California, has dealt with the debilitating pain of fibromyalgia since childhood. Like many with fibromyalgia, she has another overlapping chronic pain condition, mandibular joint disorder (TMJ), which causes pain and dysfunction in the jaw joint and the muscles that control jaw movement. She spoke with NIH MedlinePlus magazine about her conditions.
When did you start having symptoms of fibromyalgia?
I actually think I've had it since I was a kid. After just doing normal kid stuff, I would wake up the next day and my ankle would hurt for the next two weeks. That kind of thing seemed to happen pretty often. I have had problems with my right wrist since the third grade.
Did your problems become more severe over time?
Yes, it seems like it became more noticeable on a day-to-day basis in high school. When I was 19, I was diagnosed with TMJ after I started having pain in my jaw when eating. Sometimes I had to go on a liquid diet to avoid the pain.
I have wondered whether my pregnancy impacted my condition, because since I got pregnant with my daughter I've had to think about being in pain every day. My daughter is now 8 years old. When she was little I felt terrible because often I couldn't read her a book at night because of the pain from TMJ.
What process did you go through to get diagnosed with fibromyalgia?
Many doctors saw me over the years. Some were dismissive of my symptoms. I had been tested for lupus over and over and arthritis.
I wasn't diagnosed with fibromyalgia until I was 26. A wonderful new primary care doctor was very thorough and referred me to the appropriate specialists. They did specific tests for fibromyalgia, including pressure point tests. They asked me where the pain was and I said it is easier to tell you where it is not.
When you got the diagnosis, what was your reaction?
I had a split second of relief that I finally knew what it was, and then I just had a flood of emotions. Because of my history, I was skeptical. But after a few more visits it was clear that the diagnosis was correct.
What treatment did they prescribe for you? How has that helped?
The doctor started me on one medication, but that didn't help. Then they started me on gabapentin. It took four to five months to get the right dosage. I have a little bit of pain, but few side effects. I have been on this medication for almost three years now. And I feel like myself again. When I was having pain on a regular basis, I didn't feel like myself.
I am a school bus driver now. I know that without the medication I wouldn't be able to work. I tried to be more active but it just knocked me out.
What do you say to others who might be experiencing these kinds of symptoms?
Try to find the right doctor who is willing to work with you and listen to you. Keep trying to find what works for you even though can be a tiring and frustrating process. Medications are scary, and they don't work for everyone, but for me the right one made me feel like myself again.
What Research Is Being Conducted on Fibromyalgia?
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) sponsors research that will improve scientists' understanding of the specific problems that cause or accompany fibromyalgia, in turn helping them develop better ways to diagnose, treat, and prevent this syndrome. For example:
Scientists are seeking to determine the extent to which chronic pain in people with fibromyalgia is associated with the activation of cells in the nervous system and the production of chemical messengers, called cytokines, that regulate immune cell function.
- Researchers are using imaging methods to evaluate the status of central nervous system responses in people diagnosed with fibromyalgia.
Investigators are seeking to identify markers of fibromyalgia in the blood that might ultimately lead to more targeted and effective treatments.
- Studies are examining the use of cognitive behavioral therapy and transcutaneous electrical nerve stimulation (TENS) in people with fibromyalgia, which researchers hope will result in better management of the disorder.