Sharing insights from the road to recovery
Sharing insights from the road to recovery
One CM returns with wisdom and compassion
There's an adage that rings all too true for Barbara Luttrell, RN, BSN, ABQUAR, CDMCS, nurse consultant in Atlanta: What goes around, comes around. "I believe nothing in life happens by accident," she says.
"I remember as a case manager in the 1980s seeing a diagnosis like chronic fatigue syndrome [CFS] or reflex sympathetic dystrophy and groaning. These types of diagnoses are like trying to nail down Jello," Luttrell says. "A diagnosis like that always caused sparks of doubt about the validity of the claim."
Today Luttrell finds herself on the other side of a disability claim. "Here I sit 15 years later wondering if God doesn't have a sense of humor. And I can say this pain, this disability, is very real."
After months of recurrent viral infections, debilitating pain and fatigue, Luttrell was diagnosed with fibromyalgia and sarcoidosis, an accumulation of inflammatory cells that occur in tissues throughout the body, most often in the lungs, lymph nodes, eyes, and skin. "I often have the feeling that if I had tried to fix this sooner, I wouldn't be where I am. Now, I would tell any person who told me they felt tired all the time to be responsible for their own medical records. If you keep your own medical records, the story unfolds and the diagnosis comes quicker."
An experimental treatmentLuttrell has two primary care providers - a rheumatologist and a pain specialist, who is a psychologist. Her treatment plan includes:
· physical therapy:
· guaifenesin, to thin the mucous associated with her sarcoidosis;
· a mild antidepressant to promote deep, stage four sleep;
· plasmapheresis, an experimental treatment that filters her blood to remove viral antigens.
"My rheumatologist recommended the experimental treatment program, and it's wonderful. The day after a treatment, I feel very refreshed."
Luttrell receives plasmapheresis treatments twice a week and physical therapy sessions with a fibromyalgia specialist three times a week. In addition, she consults with a chronic pain specialist. "He's helping me identify my limits. For example, I sometimes don't realize that I've overdone my physical therapy until I wake up exhausted and stiff the next day. I don't recognize my own limits," she explains. (For more information on the treatment and symptoms of fibromyalgia, see pp. 77-78.)
"I've learned that pain is designed for our benefit. It tells us when it's time to stop pushing and take care of ourselves. I've looked down the road I've traveled and seen my progress," Luttrell says. "I do plan on coming back and helping other patients with what I've learned. I cannot wait to be a blessing to my first fibromyalgia patient."
Among the new insights Luttrell plans to share with patients are these:
1. Lower your expectations. "The first step is to help patients move the bar down," she says. "It's the realization that you will not get everything done that you must and that it's OK. That's a very hard concept for an intelligent, ambitious person to accept."
2. o one recovers from fibromyalgia alone. "I was ashamed of my limitations. I tried to hide my pain and fatigue for far too long. I continued to come into work even when I wasn't feeling well or functioning at my best. One of the biggest gifts a case manager can give a client is to remove the stigma associated with these types of disabilities. As case manager, we must learn to let that one potential malingerer go by and work for the other nine patients with legitimate disability who need your help."
3. It's important to maintain your own records and coordinate your care. "I was moving from one specialist to another having different tests ordered," she explains. "The results of tests from one specialist were supposed to be sent ahead to my appointment with the next specialist. However, most often the results weren't there when I came in.
"I started asking for copies of my own test results and keeping them in an organized notebook which I always bring with me to appointments. In addition, if I have a test done in one office, I personally fax the results to other members of my treatment team."
When providers questioned Luttrell's request for her own records, she told them, "I have a brain fog, I can't remember everything you tell me. I need to take these with me, so I can read them later."
Pay attentionLuttrell's advice to case managers is to pay close attention to any indications that suggest a client may develop CFS or fibromyalgia.
"These types of conditions often begin with an injury or illness," she says. "If you have a carpal tunnel patient, ask them about sleep disturbances. Intervene early with a sleep aid or other mild antidepressant. Teach them coping techniques before you send them back to work. Work with them on stress management issues.
"And, whether you believe they are as in as much pain as they say, treat them with respect. Validate their experience. It's an important part of developing the relationship of trust necessary to affect small positive changes," she says.
Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.