Do I Have Fibromyalgia? Or Was I Misdiagnosed?

We talk a lot about sufferers of Fibromyalgia and Chronic Fatigue/Pain Syndrome not being heard, but what about the patient who is having similar symptoms but being misdiagnosed. I read an article on WebMD that shares a story of such an event as well as some other people who are in search of answers that I though I would share with you.

"One member of WebMD’s fibromyalgia community wonders if it's possible that she has been misdiagnosed with fibromyalgia. “My pain is centered in my lower back. I was under the impression that fibromyalgia affects the whole body,” she says. She has back spasms and can’t sit for an extended amount of time. Some days her spine is tender to the touch. A set of X-rays showed she had a curvature in her spine and an MRI showed multiple bulging discs. But her doctor says her back pain is due to fibromyalgia, not the discs. “My doctor says the discs are not the problem,” she says. “Per my doctor, I have over 17 pressure points.”

Her other symptoms include extremely dry eyes, mostly in the morning. “Both eyes feel dry and feel as though there is something in them.” In addition, she has difficulty sleeping and often feels fatigued. She is taking pain medication and a medication for anxiety, but she is no longer doing any type of therapy because it caused too much strain on her back. She wonders if any other community members have experienced similar symptoms.

One man responds that he had a similar experience when he was first diagnosed with fibromyalgia. “My intro was just in my chest muscles -- I thought I was having a heart attack at the time.” He suggests she see a rheumatologist, if she hasn't already, for an accurate diagnosis. But he says it’s important to find a rheumatologist who is experienced in treating fibromyalgia. “Call around. Your first question should be, ‘Does the doctor treat fibromyalgia?’ Unless you get a definite YES, keep dialing.”

Another community member agrees that the symptoms described sound like fibromyalgia. She says that in her experience, fibromyalgia symptoms can vary a lot from day to day. “I know that in the many years I have dealt with fibromyalgia that there aren’t many days that are the same or many areas of my body that acted or reacted the same time after time,” she says.

One member wonders how to find a doctor in her area who will diagnose fibromyalgia. “I live in the Louisville, Kentucky area and have yet to find any doctor within 100 miles who will diagnose or believe in fibromyalgia,” she says.

Two community members say that diagnosing fibromyalgia can be a long and frustrating process. One of them adds that it took her three years to get diagnosed.

Another woman suggests consulting with her primary care doctor and voicing her concerns about fibromyalgia. “You have to keep at it until someone listens,” she says. She suggests writing down a list of all her symptoms and giving the list to her doctor. “That way you don’t forget anything, and if you are shy or nervous then it is in plain English for the doctor to see. Usually it starts the process of questions by the doctor.”

Two other community members also suggest trying to find a rheumatologist to diagnose fibromyalgia. They say that in their experience, rheumatologists generally seem to know the most about fibromyalgia and are more likely to diagnose it correctly. “Don’t give up, ever. Keep asking until you have an answer and a diagnosis,” one says."

It is just as important to be proactive in your healthcare as it is to be hesitant when the pieces don't fit together. I am the first to admit it is frustrating to want a name, a diagnosis for all the pain that you are in and sometime we get desperate and when the Dr. says it's Fibro, well it must be Fibro, right? Well, it's not always the case and as some of you already know many autoimmune disease symptoms run parallel to each other (ie:Lupus,etc) and when not treated correctly the long term damage can be scary. 

The lesson here once again, is to find Dr.'s and specialists you not only trust but come recommended, but to trust your gut. If you feel as though things just aren't adding up, speak up and keep pushing forward until they do.