Fibromyalgia: A Life Sentence Of Pain
It was 1991 and Paula Thibault was working as a nurse in a local hospital when she suffered an injury. The injury itself was not too traumatic and she figured the pain would pass once it healed. But despite getting treated for her injury, the pain never went away. Soon, the pain from the injury site spread to all four limbs and her internal organs. As the weeks turned into months, the pain settled itself into her body and took up a permanent residence. She didn’t realize it at the time, but she was suffering from fibromyalgia, a disease so baffling that many of the doctors she went to see considered it a phantom syndrome or a figment of her imagination. “Over the years, doctors kept telling me that my pain was in my head,” explains Paula. “They said I was too stressed with the kind of job I had and that there was nothing they could do for me. I was told to find a way to live with it.”For patients with fibromyalgia, the process of convincing doctors and others that the pain is real and should be treated can be as difficult as enduring the constant pain in their bodies-receiving a diagnosis and getting treatment becomes a battle of wills.
The key symptoms that doctors use to diagnose fibromyalgia include three months of unexplained chronic pain that spreads over the entire body. The difficulty in recognizing it may explain why fibromyalgia remains undiagnosed in roughly three-quarters of patients and often takes five years before the proper diagnosis and treatment are discovered.
Women are seven times more likely to suffer from fibromyalgia than men, although experts say this may have more to do with the way women experience pain as they are more likely to feel intense pain and therefore more likely to seek treatment. Researchers from UCLA hypothesize that the differences in pain perception may stem from our caveman days when women took care of the babies and therefore had to develop an emotion-based response to pain and stress while men had to push aside feelings of pain in order to fight and hunt.
Considering the criteria for diagnosing the disease has only been around since 1990, it’s not too surprising that fibromyalgia often goes undiagnosed. And even when a patient gets a diagnosis, there is no gold standard treatment for it and there is no cure. “A correct diagnosis of fibromyalgia means that a reasonable goal of discomfort reduction is 50 percent,” says Jeffrey Gould, M.D., neurologist and Chief of Medicine at Westfield Hospital. “More pain relief would be terrific but it’s just not typical given the current therapies and understanding of the disease.”
This difficulty in diagnosing the disease and the limitations in treatment options create a complicated puzzle for patients-the mind and body are so closely connected that the lack of hope of a cure, or even a break from the pain, can itself become a stumbling block to healing. “I spent eight years being misdiagnosed,” explains Paula. “I saw 21 physicians in various specialties to try and understand why my body was not healing, knowing that I was once perfectly healthy.” And while she was running from doctor to doctor seeking answers and a respite from the pain, the pain got worse and more debilitating.
Ask a fibro sufferer how it all began and they can pinpoint the day that they realized their life as they knew it would be over-the day their health took a permanent turn for the worse. Fibromyalgia is often triggered by something, like an injury, which may cause the body to misunderstand the “normal” response to pain. While experts aren’t quite sure what happens in the disease, a theory is that the patient’s brain and spinal cord suffer a communication breakdown with the nervous system so that pain messages are cranked up way too loud. These constant loud messages of pain don’t correspond to any stimuli-it’s like the brain is telling the body that it’s been engulfed in flames when all you are doing is walking to the car. The pain can wreak havoc on a person’s life, affecting sleep, work and digestion.
And while there is no cure, there are treatment options. “Medications available to treat fibromyalgia include Cymbalta, Lyrica and Savella,” says Dr. Gould. “Each of these medications has its own benefits and risks so the treatment needs to be tailored to the patient’s needs.” It’s a good idea for fibro sufferers to try and minimize stress and get into a good sleep schedule. Dr. Gould also suggests that patients “continue mild to moderate exercise routines as part of the therapy.” Patients might also find solace in alternative therapies like yoga and acupuncture.
Because fibromyalgia is such an emotionally taxing syndrome, it’s important to get support. “Chronic pain can have an emotional toll,” says Paula. “It affects everything from your marriage and relationships to your career to simply enjoying life..” She explains that whether the diagnosis is fibromyalgia or another condition, patients just want to be heard and believed. This is why she started a support group in 1999 called Compassionate Friends Network. If you suffer from chronic pain, it doesn’t matter it’s important to find a doctor who will listen to you and help you find some relief.
To join Paula’s free, informational and educational network, e-mail your first and last name, address and telephone number to her at [email protected] Paula’s list is confidential and will be used only to contact people for meetings, events and mailings.
SOURCES:
Paula Thibault
Compassionate Friends Network for RSD/CRPS and Fibromyalgia
[email protected]
Jeffrey Gould, M.D.
Neurology And Sleep Medicine, P.C.
510 Delaware Avenue, Bethlehem
610.866.6614
nsmpc.com
