It hurts to walk. It hurts to sleep. It hurts to hug.
And it hurts when people don't understand.
You must be a complainer or a hypochondriac, they think. Maybe it's all in your head.
You look fine — why don't you get better?
If there is a form of purgatory on Earth, many fibromyalgia sufferers believe there might be a corner reserved just for them.
The inexplicable pain, the challenges of getting through a day and the skepticism of doctors, family and friends can become overwhelming.
There are no biopsies, no x-rays or cheek swabs that can diagnose fibromyalgia — a syndrome associated with long-term pain, often accompanied by fatigue, sleeplessness and depression.
And its symptoms can mimic other medical problems, making the diagnosis even more difficult — especially when the symptoms come and go.
For years, many doctors dismissed fibromyalgia, chalking up concerns to anxiety or stress.
But thanks to a growing understanding of the condition and new drugs, patients are less likely to encounter the lack of answers to their pain.
Robin Kellick spent years trying to find her own answers.
She knew what she was experiencing was real. It was a matter of finding a doctor who believed her.
Kellick, 55, said she had always been an active individual — a cheerleader in high school, an aerobics instructor, a wife and mother who, at one time, held down two jobs but always had a spotless house.
"I was busy, always on the go," the Williamsport resident said.
But in 1997, while working at North Hagerstown High School, Kellick began experiencing leg pain.
As it worsened, she went to her gynecologist, who did some testing.
It was the beginning of a long list of doctor appointments — family physicians, a surgeon, chiropractors and a spine specialist — where there was never a solution to her problem. None of the remedies they recommended helped.
Eventually, the pain began to spread through her body, making her unable to work or do simple chores.
It was a Hagerstown rheumatologist, Dr. Steven Klein, who finally made the diagnosis, Kellick said.
After listening to her relate her symptoms, Klein left the room and returned with a handful of pamphlets.
Kellick was told she had fibromyalgia.
"It wasn't well known at that time," she said. "So the doctor explained what it was all about."
Although it was scary, Kellick said she was relieved to finally have her answers.
"It had been very frustrating. All those years, I knew something was wrong. I was glad to know that someone finally believed me. Someone knew it was something that wasn't just in my head," she said.
Following her diagnosis, Kellick said she was put on various medications in an attempt to find out what would work.
In the process, she noted, she also was diagnosed with lupus — a result of how her body reacted to prednisone.
She started swimming in a warm pool to ease her symptoms and began seeing a physical therapist who was familiar with fibromyalgia, Lorraine O'Neill in Hagers-town.
"She and her staff really made a difference," Kellick said. "They gave me exercises to do, deep tissue massages, meditation tapes to soothe me and encouraged me to rest and listen to my body."
Kellick said fatigue is one of the symptoms of fibromyalgia and she has learned to take naps whenever she feels herself slowing down.
"That's a big thing," she stressed. "You have to get your rest. You can't fight fatigue because it only makes the pain worse."
Kellick said she was never the kind of person who put herself first, "but when you have fibromyalgia, you have to take time out for you."
Kellick said she can sympathize with other individuals who are dealing with constant pain and are desperate for help.
So eager to find relief, she went to some specialists. But they did more damage than good.
In one instance, she underwent a laser procedure to her lower back that resulted in a second degree burn and a trip to the emergency room and treatment at Meritus' Wound Center.
Before the diagnosis, she also had been overmedicated and had to be weaned from the drugs she was taking.
"No matter how much you want to find help, you have to be careful about who you turn to," she noted.
While the pain initially began in her legs, Kellick said today she has pain in the 18 pressure points associated with fibromyalgia.
"I hurt all over," she said.
"When you have fibromyalgia, your days surround your illness," Kellick said. "Sometimes, the pain is so great I can't even sweep my front porch. What I'm able to do during a day depends of the level of pain."
But, regardless of how tough some days can be, Kellick said she won't let fibromyalgia get her down.
"I try to keep a routine, which I think is important," she noted. "It keeps me from thinking and worrying. I get up in the morning, let my dogs out, have a cup of coffee and, when the weather is warm, sit outside. In the afternoon, I lay down and if I do have to go out, I pace myself, which is true of everything I do during the day."
Kellick said she relies upon her faith, which helps her maintain a positive outlook on life.
"I've always had a strong faith, but it has deepened now more than ever. I have that higher power," she said. "I believe that there's a reason for everything."
Kellick said she currently takes several medications each day, uses a heating and cooling pad on a regular basis and always has a pillow close by for support —including in her car.
Along her fibromyalgia journey, Kellick said she has met some wonderful people, "who help boost my spirits and lend a sympathetic ear. It's important to have someone you can talk to."
But she couldn't get through her days, she added, without her husband.
"He has been my rock," she said. "He helps me in any way he can. He's been wonderful. No one can understand the pain, but he never doubts what I'm going through. I don't know what I'd do without him."
Since the diagnosis, Kellick said she has learned to eat better, take time for herself, have more patience and cry when she needs to.
"I also pray that it might not be like this forever," she added. "I'm hopeful that I'll be able to at least manage future pains that come with aging. And as far as my future? When I'm 70 or 80, I'll be so used to having pain that I'll tell everyone else, ‘get over it.' I think I'll be stronger than ever."
The main symptom of fibromyalgia is pain, but not everyone experiences it the same way. Fibromyalgia pain may be felt as:
- Chronic pain
- Deep pain
- All-over pain
- Aching pain
- Radiating pain
- Shooting pain
- Tender pain
Additional common fibromyalgia symptoms may be felt as:
- Sleep disruptions
- Chronic fatigue
- Problems with memory and thinking clearly (sometimes called "fibro fog")
- Problems with depression and/or anxiety
- Overlapping conditions such as irritable bowel syndrome, restless leg syndrome, migraines and others.