Struggling to break through the pain of fibromyalgia

BY HOLLY KESTENIS, Staff Writer

ST. PETERSBURG – Medical issues affect millions of Americans and each and every day someone is being diagnosed with diabetes, kidney disease or some form of cancer. But there is a class of diseases, those autoimmune in nature, which are relatively new on the scene of medical woes, and masters of medicine are just tapping the tip of the iceberg with how to treat them.

Valerie Dorn-Roberts has traveled a long road over the last 20 years. In her late 30s after two years of doctors handing out prescriptions for painkillers that only numbed her aches and discomforts, she was finally diagnosed with the sometimes controversial affliction known today as fibromyalgia.

A disorder marked by painful and tender points around the body associated with chronic pain, fatigue, depression and memory problems, just to name a few.

Fibromyalgia interrupts, and in its advanced stages, totally disrupts daily activities to the point where the sufferer’s body just shuts down. It’s a disease that doesn’t discriminate—anyone can be affected.

“It’s an invisible illness,” declared Dorn-Roberts who on most days has trouble even getting out of bed. “It’s just a lot of stuff that our bodies go through that people cannot actually see happen.”

So Dorn-Roberts has decided to do something about it. She has created a support group entitled “Keep Hope Alive” in which she aims to bring awareness to the bay area when it comes to fibromyalgia and hopes to end the stigma long associated with diagnosis.

Those afflicted are bombarded with unexplainable pain in their muscles and their joints. Most suffer in silence for years trying to figure out what is ailing them. Activities that take a healthy person a day to finish, may often take someone afflicted with fibromyalgia a week to complete.

“People say, ‘Oh you look fine,’ but you could be in so much pain,” Dorn-Roberts said confiding she used to remain silent about her constant pain. “It feels like this thing is going to kill me, but I’ll fight a good fight.”

Fibromyalgia came into the forefront of American culture in 2008 when the Food and Drug Association approved Lyrica, a drug usually given to diabetics for pain management, to treat chronic pain associated with the disease.

But some doctors are still skeptical of branding fibromyalgia a disease and with no test to prove it exists, have been reluctant over the years to diagnose patients, much like when chronic fatigue syndrome was first introduced as a disease.

“It’s all in your head, or you’re just developing a little bit of arthritis,” Dorn-Roberts recalls her doctor saying as he dismissed her symptoms, while having to go through various diagnoses before finally being referred to a rheumatologist who ruled out lupus and other autoimmune disorders. “There is so much you have to go through to get a true diagnosis.”

In fact, Dorn-Roberts was even told at one point that she may have cancer, although tests finally revealed she did not.

“I was taking all kinds of tests and they all came back negative,” she said remembering the frustration she experienced in those early years living with the then undiagnosed disease. Dorn-Roberts hopes to help others who may be experiencing the same situation. “Don’t keep hurting without knowing what’s going on because it could very well be fibromyalgia.”

Those with the disease find it difficult to remain in a nine-to-five job when the disease progresses and Dorn-Roberts was no different. Once employed in the nursing field, she soon realized that the physical and emotional stress of the job only amplified her symptoms. Throughout the years, Dorn-Roberts has attempted to find work that she can do in the comfort of her own home so she can rest on the days when the disease strikes hard.

Today Dorn-Roberts support group meets once a month with those in need of extra support, whether it is with fibromyalgia, diabetes or even cancer. Although the membership is low, Dorn-Roberts hopes to increase interest in her support group and get the word out to the community that it’s okay to ask for assistance.

Dorn-Roberts admits the disease can be confusing. Some days she finds she has energy to do everything, moving swiftly about her business, only to turn around the next day unable to move, get out of bed and with “fog brain,” another ailment afflicting fibromyalgia sufferers where patients aren’t able to fully concentrate.

“It hits you, your strength, like somebody pulled a plug from the electric socket,” Dorn-Roberts described. “Once that plug is pulled, you’re going down wherever you are.”

Drugs are now approved to help sufferers deal with some of the symptoms of the disease, but Dorn-Roberts warns that taking them could lead to more problems as most of the medications have rather severe side effects. So instead she leads her fellow members down the path of natural healing. Through the changing of diet and increased exercise and meditation, Dorn-Roberts is beginning to regain control of her life.

Whether you subscribe to the skeptic’s view that fibromyalgia is not a disease or if you are living with the chronic pain day to day, it isn’t argued by anyone that those who have the condition experience greater physical distress the more they are stressed out, depressed or experiencing some form of economic or social anxiety.

That in itself should be a sign for those afflicted to slow down.

This past Saturday, Dorn-Roberts held an awareness picnic at Campbell Park to spread the word and offer support for others in the community who may be dealing with fibromyalgia in silence.

“I’m very excited,” said Dorn-Roberts who advertised on radio and by passing out flyers. “I have a passion for what I am dong. I want to take the torch and go and let people know this race is not over in life.”

So if you or a loved one is suffering from fibromyalgia or another chronic pain condition, check out Dorn-Roberts and the Keep Hope Alive members on Facebook for information on joining. There is no fee to be a member.

Currently Dorn-Roberts is working on a book entitled, “Behind Closed Doors and More,” describing how she copes with her condition, her personal life, and who she has had to lose in order to find strength in herself to move on to fight another day.

“It’s going to be a whopper,” she said.