Living with fibromyalgia and chronic fatigue syndrome can be trying and painful, even on the best of days. Just ask 58 year-old Daniel Hanson from Ohio, who is all too familiar with the devastating effects of these illnesses.
“Some days it is hard to even function at all. I get tired so easily,” says Daniel. “I wish I could do all the things now that I could do before. It gets very frustrating.” During the interview, he doesn’t have to tell me how frustrated he is. I can hear it in his voice.
Daniel, who used to work in a steel mill making approximately $60,000 per year, is now unable to work outside the home and has filed for Social Security disability benefits. “Stress makes this condition worse, and I am very stressed out waiting to hear if I will get my disability or not. For now, I am living off of savings, but I don’t know how long that will last,” he says. “What is really frustrating to me is the fact that I need to go to the doctors in order to get all the documentation I need for disability, but since I am not getting benefits and I can’t work, I have no money to pay a doctors with. I was turned down for disability the first time I applied, but then I got an attorney,” he says. “Every day I am anxious to go to the mailbox to see if I got an approval letter or not, but so far, nothing. When the phone rings, I want it to be my attorney calling with good news.”
What is fibromyalgia and chronic fatigue syndrome?
Generally speaking, fibromyalgia is chronic, widespread pain that affects the joints and muscles, usually in specific areas called “tender points.” It is often debilitating and tends to walk hand-in-hand with depression. Whether depression is a by-product of fibromyalgia, or a direct cause, seems unclear at this point.
Fibromyalgia is often accompanied by chronic fatigue syndrome (CFS), which is generalized fatigue accompanied by flu-like symptoms; again, this can be debilitating.
Along with the aforementioned symptoms, a patient can also experience panic attacks, seizure-like episodes, heart palpitations, stomach problems, and a vast array of other issues.
What causes fibromyalgia and CFS?
The cause of fibromyalgia and CFS has been debated for years, although there appears to be a possible link between these two illnesses and the Epstein-barr virus, which is the virus that causes mononucleosis . There is no cure for fibro or CFS; it is managed with diet and exercise. Some medications such as Lyrica have proven to be somewhat helpful.
Daniel Hanson is among a growing number of people to come down with fibro and/or CFS. “There is not a pill I can take to make this all go away, or to feel better. I can’t take Lyrica . I just have to deal with it on a daily basis,” says Daniel.
He also talks of “brain fog,” which is a feeling of being unsettled, losing track of time, feeling light-headed, and basically being in a “Twilight Zone” state of mind. This can become a huge problem for patients when it comes to balancing a checkbook, remembering to pay bills, etc. “I don’t know how many times my utilities have almost been shut off because I forget where I put the bills, or even that I got them to begin with,” says Daniel. “The short-term memory loss is terrible. I will go to the store for one item, and by the time I get there, I forgot what I was there for. I can’t remember the things that most people remember really easy. I just want my life back. There is no cure for this, and a lot of days I can’t even function normally,” says Daniel. “I went to give my cats a treat today and I had to look for the treats…I couldn’t remember what I had done with them.”
Although Daniel tries to stay optimistic, he admits there are times when he breaks down. “Sometimes it is just too much to take,” he says.
Knowledge is key!
First, talk with your healthcare professional if you suspect you have mononucleosis, fibromyalgia, or chronic fatigue syndrome. Educate yourself by reading up on these subjects.
My doctor says I have fibro and CFS. What now?
First, don’t panic. Keep all your appointments with your healthcare professional. He or she will help walk you through the process of learning to live with fibromyalgia and CFS. You can also find online support by going to the following websites:
National Fibromyalgia Association
Sources: Interview with Daniel Hanson, 12/16/2010