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Dealing with Pain: One Woman's Experience with Fibromyalgia

Seven years ago, after falling in the bathtub, Judith Steiner (her name has been changed for purposes of privacy) started to experience intense physical pain and extreme discomfort. She would later be diagnosed with fibromyalgia, a diagnosis that offered her little consolation since not much was known or understood about the condition.

At first, Judith found little solace among medical professionals. "There's nothing worse than being in extreme pain and having a doctor tell you it's all in your head―it's literally adding insult to injury. I did not appreciate the reductionist view that many doctors had that this illness is purely psychosomatic." In addition to persistent muscle pain throughout the body, sufferers of fibromyalgia often experience severe fatigue, insomnia, bladder irritation, headache, diarrhea, and abdominal bloating.

Today, more than 12 years after its arrival on the medical scene, fibromyalgia is still a mystery to many, doctors and patients alike. According to the National Fibromyalgia Research Association, a survey done in 1998 by Dr. John Renner, president of the National Council of Reliable Health Information "showed that 50% of American medical doctors do not view fibromyalgia as a credible, physical malady." Some activists fear this is because a great majority of those afflicted with the condition are women. Others assert that because it is an illness that is hard to pin down, both its treatment and diagnosis are often not taken as seriously as they should be.

Because the condition still mystifies many, it is regularly featured on talk shows, in newspapers and magazines, and is the focus of hundreds of Web sites, all trying to ferret out the true nature of the disorder. The sheer amount of often unreliable information only adds to the confusion of those looking for answers. So Judith decided to try to find some answers on her own.

"The trigger for my own pain syndrome was a blow to the upper part of my spine (the dorsal horn), which is the most common precipitant for this sort of pain dysregulation experience," says Judith. "When I fell, I suffered a number of injuries, but it was the trauma to three cervical vertebrae that really got me into trouble." Judith decided to interview other patients, to collect an oral history of what prompted their systems and which treatments worked for them.

"Other people I've spoken to in the course of my investigations reported onset following repetitive strain injuries, hormonal disruptions involving HRT (Hormone Replacement Therapy) before or during menopause, and in the case of two men I interviewed, a long flu-like illness. However―and this is important―none of the people I spoke to reported the feeling of being ill or in a mental fog, as one hears from people diagnosed with chronic fatigue syndrome." Fibromyalgia is often lumped in the same category as chronic fatigue. "In all cases, my own included, pain was the issue―pain that could not be explained on the basis of clear diagnostic evidence such as blood tests for arthritis, lupus, MS, or X-rays or MRIs, or nerve conduction tests for neurological disease."

Fibromyalgia has caused a heated debate among medical professionals, polarizing the medical community. They contest almost every aspect of its treatment and diagnosis. Judith's case was no different. She went to a variety of doctors and tried a battery of treatments.

"From my experience, the diagnosis up until now has been based mainly on rule-outs of what it is not. In addition, doctors check for a series of 17 tender points in the body that are characteristically painful to the touch, and they do an interview to get the overall clinical picture." Still, the diagnosis remains mysterious and controversial. "My own hunch is that judging from demographic evidence and in-depth interviews," (that Judith performed herself) "some individuals (mainly women) are more vulnerable than others to developing this type of pain syndrome, and that I am one of them. Something― not necessarily the same thing―knocks out the person's pain feedback system, which is a complex neurohormonal feedback loop, and then it's the devil's own work to get that system back on track."

Judith's path to recovery was a long one. She tried a number of treatments—traditional and alternative, pharmaceuticals and therapies. But she suffered for five years before patching together a treatment that worked for her. "For me, a combination of things finally began to work at the five-year mark: water therapy, meditation/relaxation, and walking. I kept trying for the best possible balance of exercise and rest, with a lot of setbacks along the way. Acupuncture helped for a little while, regular physical therapy made me worse, and Prozac (antidepressants) did nothing. Ativan (lorazepam) helped me to sleep when the pain was bad. NSAID's (nonsteroidal anti-inflammatory drugs) messed up my innards."

"Everyone has a different experience with these therapies, but I do think that the key to breaking out of the pain cycle is to find the maximum number of ways to interrupt the pain so that the pain feedback system can reset itself." While Judith has discovered a lot about the disorder through personal experience and interviews with others, she doesn't claim to have any "official" answers. "To this day I am not sure exactly what is or isn't true about fibromyalgia, and I wouldn't want anyone to take my ideas about the illness as dogma. What I do think is that the neurohormonal bases of chronic pain are poorly understood and just now beginning to be seriously researched."

The condition is receiving more attention now than ever before. Fibromyalgia clinics have been founded, and, due to the persistence of advocacy organizations and lobbyists, the National Institutes of Health is now spending millions on fibromyalgia research. Hopefully it will lead to some concrete answers for those who have to suffer with chronic pain every day. Judith, in the meantime, has more or less returned to a "normal" life and is able to take part in the activities she loves once more.

Making and Supporting Inferences

Inferences are ideas or opinions that are not stated but that can be inferred or concluded from the information given. Put a plus sign (+) in front of the valid inferences. Put a 0 (zero) in front of the statements that are not valid inferences.


1		Most doctors and researchers believe that fibromyalgia is a serious and treatable illness.


2		Some doctors don't take women's pain symptoms as seriously as men's.


3		Doctors agree on the cause and treatment of fibromyalgia.


4		The cause of fibromyalgia could be related to hormones.


5		Nonsteroidal anti-inflammatory drugs can damage the stomach.


6		There is now a proven treatment for fibromyalgia.


7		Until recently, little research was done on fibromyalgia.

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