ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Woman's struggle brings disease to light
Monday 27 December 2010
Woman’s struggle brings disease to light
When Charles Town resident Claudia Patterson first started experiencing the symptoms of fibromyalgia, one of her biggest fears was that she would have to abandon the stage.
"I work for a living, but my degree is in music education, so music and musicals have always been a huge part of my life," Patterson said. "It was scary, it was frightening. The stage was something I didn't want to give up."
Fibromyalgia is a medical condition with symptoms ranging from chronic, widespread pain and tenderness to decreased physical function to a "fibro haze," which can cause sufferers to have trouble with their memory and to feel not themselves.
"I was almost afraid to get back on stage because I was having trouble remembering my lines," Patterson said about her issues with fibro haze.
Patterson, who also is a Hodgkin's lymphoma survivor, knew something was wrong about five years ago after putting her mother in a nursing home. Patterson was experiencing pains, which she attributed to physical exertion, and then she started suffering from the haze.
"I went to the doctor and asked what was going on. I just thought I was getting old," she said. "They ran tests to eliminate other things and sent me to a physician to treat the fibromyalgia. Prior to that, I'd never even heard of fibromyalgia."
Patterson's experience with the condition can be seen as a microcosm of a national fibromyalgia problem. An estimated six to 12 million Americans, mostly women, suffer from fibromyalgia and as many as three fourths of those afflicted may be under-diagnosed, according to HealthyWomen.org, which recently released the results of a fibromyalgia study sponsored by Forest Laboratories Inc.
"Fibromyalgia can present (symptoms) in a number of different ways," said Dr. Nathan Wei, a rheumatologist out of Frederick who treats a number of fibromyalgia patients and who participated in the study. "Depending on the presenting symptoms, a person can see any number of different specialists. It's not one of those diseases that you hear a lot about."
While fibromyalgia typically isn't a life-threatening condition, it can lead to multiple physical and mental problems if left untreated.
"I think the major problem is what it does to the patient's self esteem and psyche," Wei said. "They have a very real problem but are sometimes blown off by doctors. If they have these debilitating symptoms and nobody understands, they can become depressed. Symptoms will worsen and the patient may develop other symptoms."
"The impact is felt not only on a person's career but on their ability to do household activities. That can be really important in the long haul," he added.
One of the reasons a patient with fibromyalgia may be "blown off" by a doctor is that it is such a difficult disease to diagnose.
"Fibromyalgia is a diagnosis of exclusion," Wei said. "There's no simple blood or imaging test that can make the diagnosis. You have to be pretty aggressive with treatment once diagnosed. It's very challenging, there's no one treatment. Treatment has to be highly individualized."
Treatment for fibromyalgia can include aerobic and cognitive exercises, and there are numerous medications available.
"I got on medication and that's working well," Patterson said. "The haze and aching is gone as long as I take my meds and I'm not willing to go off the meds to find out if I'd still have symptoms."
Patterson takes two pills each day, one in the morning and one at night. "I can still screw up and end up in pain, but it's mainly if I overdo something, and it's no more than someone else my age."
The proper treatment has also allowed Patterson to continue her work in local community productions. She performed at a dinner theater for 16 weeks earlier in the year, and she just finished with "White Christmas" at Charles Town's Old Opera House, a production in which she had a song and dance number. She usually tries to perform in at least two productions a year.
"Some movements were definitely more difficult," Patterson said. "(In) White Christmas I had a dance number that, five years ago, I'm not so sure I could have done. But the theater is important, and I like doing it. It's something that really makes me feel good. It's my reward in life."
Patterson considers herself lucky that she has had the support of her family to get her through everything, and that her doctor was competent to know what was wrong with her.
"Where I was the most fortunate was that my doctor recognized it," she said. "From what I've heard, fibromyalgia can go undiagnosed for a long time. I did a TV spot about a year ago for fibromyalgia awareness, and someone I worked with came to me and said their mother had seen the spot and recognized that that's what she had."
Wei said he has had patients come in for fibromyalgia because someone who knew what the disease was told them the symptoms.
A patient's outlook greatly improves the sooner a diagnosis can be made and treatment is started, he said.
When it comes to medication for fibromyalgia, it's important for people to be patient until they find the correct medication, Patterson said.
"I know what I'm on doesn't work for everybody, but keep trying until you find something that works for you," she said. "And the more people who are aware that it's (fibromyalgia) out there, the better the chance they have of recognizing it and getting help."
The above originally appeared here.
blog comments powered by Disqus