SAVANNAH, Ga. (WSAV) – Thursday, May 12, is Fibromyalgia Awareness Day in the United States, and WSAV NOW spoke with two local residents about their experiences with the condition.
Fibromyalgia is a disorder that causes pain throughout the body, sleep problems, fatigue and a myriad of other symptoms.
“It’s like the ultimate bully,” Lisa Griffin-Barrow said in an interview Thursday morning.
Griffin-Barrow lives in Port Wentworth and moved to the area from Kentucky. She developed symptoms of fibromyalgia when she was 19.
“When I was first diagnosed, I was actually in high school,” Griffin-Barrow said. “I was very active. I was a cheerleader.”
She said that at first, she did not want to accept her diagnosis, partly due to the way the disorder was treated socially.
“Everybody just deemed it as the disease that was pinned on you when they couldn’t figure out what was wrong with you,” she explained.
Griffin-Barrow did not want to have the condition, so she decided to pretend she never had it.
“I was like, ‘You’re not going to pin that on me,’ you know?” she said, recalling not wanting to be seen as someone who was attention-seeking or just trying to get drugs.
Even though she tried to deny she had the disorder, things gradually got worse. Eventually, Griffin-Barrow went to the Mayo Clinic in Rochester, Minnesota, where she was diagnosed with the condition again.
“That is where I accepted my diagnosis,” she said. “Because when the Mayo Clinic tells you that you have something, well, it’s so.”
Griffin-Barrow said the symptoms that impact her the most are migraines, constant pain and fatigue.
“I have a daughter who has Down syndrome, so it is absolutely imperative that I have energy,” she said.
This fatigue is only made worse by Griffin-Barrow’s other diagnosis: lupus.
Those with lupus are more likely to be diagnosed with fibromyalgia. Griffin-Barrow was recently diagnosed after years of struggling with the disease.
She said that having both conditions made her feel like she was living with a death sentence.
Fibromyalgia is not deadly, however, lupus is a potentially dangerous autoimmune disease that attacks the body. This disease can impact the heart, lungs, brain, kidneys and other parts of the body. This condition also causes fatigue, confusion and headaches, like fibromyalgia.
Griffin-Barrow said she’s persevered with her faith, her cats and with love and support from her husband.
“If it wasn’t for the way he loves me and understands, I honestly would’ve given up years ago,” she added.
Her biggest suggestion for those who were recently diagnosed with fibromyalgia is to allow themselves to grieve the body and person they were before they developed the condition.
“I’ve never allowed myself to grieve the loss of who I was,” she said. “Allow yourself that process.”
Paula Smith said her biggest struggle as a homeless person with fibromyalgia in Savannah has been finding access to medical care.
“I am unable to get my medication for my fibro because the free clinics are not allowed to write scripts for just about everything,” she said.
When she can get a prescription written for medication, she can’t afford it. Smith makes around $5 to $10 a day and from that, she can barely afford to eat, let alone pay for a $20 a month prescription for Gabapentin, a medication that is commonly prescribed for those with fibromyalgia.
Smith said the other medications she’s able to get do not help her and cause her to fall asleep instead, getting in the way of her productivity.
“It’s a roller coaster,” Smith said.
She said that when she was first diagnosed, her pain was so bad that she couldn’t walk. Today, pain remains to be her biggest symptom.
“Imagine the worst case of the flu you’ve ever had,” she described. “For me, it’s that, plus just feeling like I’ve been beaten from head to toe.”
She echoed Griffin-Barrow’s sentiments that people oftentimes believe those with this condition are faking it for attention or to get medication.
“We’re not lying. We’re not trying to get attention. We’re not trying to get out of doing things,” she said.
Smith explained that she would much rather be able to do the things that everyone else does — but she’s in so much pain that she physically can’t.
“I’ve been living with this since ’09. It’s not getting any better,” Smith said.
She hopes that one day, fibromyalgia will get the spotlight it deserves, with more funding for research into the condition.
Smith was also concerned about the suicide rates among those with fibromyalgia. According to the Centers for Disease Control and Prevention (CDC), those with fibromyalgia are three times more likely to have major depression. Women with fibromyalgia are also more likely to die by suicide than those without the condition.
If you would like more information about fibromyalgia, you can click the link here to visit the CDC page on the condition. You can also check out the Mayo Clinic page through the link here for further information about fibromyalgia.