By Loretta Gillespie
The Cullman Times
For some people life is a little more complicated than the normal rushing around with kids, doing errands, being on time for work and other everyday routines that consume most of our waking moments.
Imagine, if you will, doing all of these things with a pain that crops up unexpectedly, sometimes so severe that it affects your ability to think clearly. This mental state, or fugue, is referred to as “fibro fog” by people who suffer with this debilitating “invisible” disease.
This is the world of someone who has fibromyalgia. It does not go away, it does not respond well to medications, and it is often completely misunderstood by family, friends and co-workers. Learning to deal with its pain and various other symptoms is a lifelong process.
Jennifer Lane of Hanceville is a “Fibro Fighter.” “I was a very healthy 30-year-old with a promising paralegal career,” says Lane. “Then, in 2009, I was stricken with devastating fatigue and debilitating pain.”
Lane struggled for a long time with the dilemma of whether this pain was just a phase or a lifetime problem. The pain started in her hands and continued into her arms. “We were on vacation at the resort where ‘Dirty Dancing’ was filmed,” she recalled. “On the way there, the pain in my hands was like a pain I had never felt. When we got home, we had a yard sale and required lifting, standing and squatting. At the end of the day I felt horrible and had to go to bed. In the next few weeks, the pain was all over my body and I was so exhausted. The fatigue was like how I felt in the first trimester of my pregnancy.”
Lane went to her family doctor, who told her right away that he thought she had fibromyalgia, but wanted to test her for Multiple Sclerosis, just in case. “It was really scary because in the previous month I was doing great and this month I didn’t feel like I had control of my own body,” she related. “I went to a neurologist who thought it was fibromyalgia, but she wanted to do a brain scan. That was one of the scariest moments of my life. The next week I had the brain scan and it was negative for MS. I was really excited but I was not happy with the diagnosis of fibromyalgia.”
Her doctor then referred her to a rheumatologist, who did the pressure points test. “I had all 18 of the pressure points that showed that I indeed had the dreaded fibromyalgia diagnosis,” said Lane.
However, she could not accept that the doctors failed to do anything else for her. “They just gave me a light pain reliever and a prescription for Lyrica and told me to exercise,” she said in exasperation. “Are you kidding me?” she would say. “You want me to exercise and I can't bend to touch my toes? None of these suggestions even touch the pain or helped with the horrible fatigue.”
At one point Lane got so bad that she was sent to a physical therapist who prescribed a walker. “A walker?” Lane questioned. “I couldn't believe that I had gone down so fast.”
Now, sometimes she sits with tears in her eyes because it was such a time of suffering and turmoil in her body. “I felt like my life (as it was) was over,” she said softly.
“Up until that point, I had only gone to doctors in my small town and in Birmingham,” she continued. “I wanted to see a specialist at a progressive, larger, more knowledgeable hospital. I wanted someone to help me!” she declared.
Finally, she decided to go the Mayo Clinic. “My mother and I drove to Jacksonville, Florida, in search of an answer. We walked into this beautiful modern building where everything was very organized. The fibromyalgia specialist did the pressure points test and took approximately ten vials of blood. Right beside the lab conveniently was a food court. I had to fast all day so after all that blood being taken and the fasting I barely made it to the restaurant.”
For three days Lane was tested by a psychologist, a sleep physician and the fibromyalgia specialist. “On the final day, all of those physicians confirmed that I had fibromyalgia.”
The experts confirmed the exact same diagnosis that the doctors in her area had. They advised that she should take the same medications. “I had been trying those for months and they weren't working. I felt absolutely doomed,” whispered Lane. “Fibromyalgia, to me, seemed like a life sentence.”
One of the things she learned is that this disease never ends. “Would I have this all the way to my retirement years? I already felt like I had the body of a 90-year-old,” said an exasperated Lane.
It took almost three years to get to the point where she could accept the fact that she had a very real disease. Now she had to learn to deal with the depression, pain and horrible fatigue that manifest themselves in this disease. “Finally, the day did come when I felt better about my situation,” Lane reflected. “I’m doing a blog to help others who are going through the same thing,” she said. “I also started the fibromyalgia support group to help others. That makes me feel better, helping others and using the talents that God has given me make me to be more confident in my pain-filled, everyday life.”
One of the hardest things about fibromyalgia is that you don’t obviously show your symptoms to the world – you aren’t bruised, broken or bleeding. “You can’t tell by looking at me but I feel as though I have the flu every day,” described Lane. “After much testing and many doctor visits around the south, I was finally diagnosed with fibromyalgia. The pain was so unrelenting that I had to quit my job and become a stay-at-home mother.”
Although she is in pain throughout her body, every day, she now works part-time, and is a charter member of the Cullman Fibro Group and attends the Garden City Church of God.
Her final diagnosis was severe fibromyalgia with complications from bulging discs and dysautomonia, which is a rare disorder of the autonomic nervous system that manifests itself with high heart rates, low blood pressure, dizziness, and other various symptoms.”
Lane, along with her friend, Christina Taylor, started a fibromyalgia support group called Cullman Fibro Group. “We have been meeting in the Hanceville Library, but we want to reach out to the whole community and offer support for all those living with fibromyalgia,” Lane explained. “I have also started a blog called Jennifer’s Fibro Story to inspire people with this disease to find what it is that God has planned for them.
“On my blog, the first thing you see is a sign that says, ‘You are not alone and this is not the end of your story’, to me that says it all,” she said. “Although fibromyalgia can take your health, your employment and your quality of life, you still have a life to live and a work to do. God tells us that He will not forget or forsake us. He promises that we can have life and have it more abundantly.”
May 12 is Fibromyalgia Awareness Day. This disease is a very real, frequently misunderstood problem among both women and men. One in every 50 people in the U.S. suffers with this unseen and often misdiagnosed disease. “It is more prevalent in women than in men, 7:1. Based on Census and CDC information, there are around 1,900 people living in Cullman City and Cullman County alone that have fibromyalgia. Five million people in the U.S. have fibromyalgia, which equals to 2 percent of the population,” Lane stated.
The Cullman Fibro Group will meet at Ryan’s Family Steakhouse on May 20 at 6:30 p.m., in an effort to share awareness about fibromyalgia. Also monthly meetings. For more information, contact Jennifer Lane at 256-338-4950 or visit her blogspot at www.jensfibrostory.blogspot.com.
The Cullman Fibromyalgia Group meets on the last Monday night of each month at 6 p.m. in the meeting room at the Aquatic and Wellness Center in Cullman.
Symptoms of fibromyalgia include:
· Chronic muscle pain, muscle spasms or tightness
· Moderate or severe fatigue and decreased energy
· Insomnia or waking up feeling just as tired as when you went to sleep
· Stiffness upon waking or after staying in one position for too long
· Difficulty remembering, concentrating, and performing simple mental tasks ("fibro fog")
· Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
· Tension or migraine headaches
· Jaw and facial tenderness
· Sensitivity to one or more of the following: Odors, noise, bright lights, medications, certain foods, and cold
· Feeling anxious or depressed
· Numbness or tingling in the face, arms, hands, legs, or feet
· Increase in urinary urgency or frequency (irritable bladder)
· Reduced tolerance for exercise and muscle pain after exercise
· A feeling of swelling (without actual swelling) in the hands and feet