With the number of fibromyalgia diagnosis’s climbing the charts year after year, one would assume there would be a plethora of support groups, or resources with patients spreading the word about their own experiences with the ailment; but that just isn’t always the case. In fact, millions of FM patients are living through their symptoms and struggles with the painful illness totally alone. Fibromyalgia is getting a lot of press currently regarding the high amount of FM patients (predominantly women) that are living in silence about the lifestyle. It’s becoming better known as an “invisible disease” on the streets, and many ladies are not coming forward with their challenges simply because they presume they’re alone in this fight, or because they don’t have the resources to locate a solid support network in their local areas. All very unfortunate news in the FM world, and one group in St. Petersburg is hoping to change all of that.
During the sixth anniversary of the “Keep Hope Alive Fibromyalgia Awareness Day” in St. Petersburg, fibromyalgia patients found solace in numbers. Those who either live with FM, or have family members with the ailment turned up at the Pinecrest Park Church of Christ in the area to show support, and gain encouragement. The event wasn’t just to network and meet friends with similar FM challenges, but also to become better educated about the painful ailment. The founder of the Keep Hope Alive support group is a woman who knows the struggles of living with fibromyalgia all too well, Valerie Dorn.
Ms. Dorn reported to the group that she too like thousands of other patients, went many years without being accurately diagnosed with fibromyalgia. She actually went through living with her symptoms for twenty years before coming to the conclusion that FM was the culprit of her pain. Valerie explained that she is so passionate about her cause because she certainly doesn’t want anyone else to go through what she had to. Hopping from physician to physician seeking a medical explanation is sadly par for the course for so many. There seems to be a lack of education or training occurring for medical providers, which, in turn, equates tons of incorrect diagnoses for men and women on a global scale. Some are commonly diagnosed with chronic fatigue syndrome, or even multiple sclerosis, when they truly have FM.
Fibromyalgia can often be a silent health challenge, which then poses a whole new world of difficulties at home, and within the medical community. Pain is often only internally felt by the patient, and FM rarely has any tangible symptoms in a physical sense, making it hard for others to find compassion or understanding for those suffering with it. Symptoms are not just pain, but also that feeling of being exhausted without ever exerting yourself, as well as memory challenges, and difficulty sleeping. FM patients often have an uncommon method of how their brain processes pain felt within the body. The illness can frequently magnify the pain, and sometimes make it debilitating to get through the day. Doctors tend to mask the issue by simply writing prescriptions for pain medications, or muscle relaxers, but millions of patients live with so many other symptoms, that this practice is often just putting a Band Aid on the issue, versus finding a more long term solution.
The Weekly Challenger reported that FM can commonly arise from a major physical trauma, a medical procedure or surgery, or even an infection. If the patient has lived through a time or significant event that resulted in psychological stress, they can also start seeing other symptoms associated with a full blown case of fibromyalgia. There are so many layers of FM that just going along with any ole diagnosis that your family doctor provides may not be suffice. Many patients advise they only had success after they went to a specialist, such as a rheumatologist to review their case carefully. National Fibromyalgia and Chronic Pain Association advises that it typically takes about five years to come across the FM diagnosis. Five years is a rather long time to find out why you’re waking up every day with pain.
What does the treatment protocol look like? Thankfully, there have been several medications to treat the pain that FM brings, however it can often come with a side effect of weight gain. Changing your diet, trying to stay as active as possible, and aiming to get adequate sleep are also terrific ways to start feeling better. The earlier you can get a true diagnosis, the better as it is less complex to begin treatment if found early on.