Lupus and fibromyalgia sufferers join together in fighting the pain

Published 5:00 pm Thursday, May 1, 2008

SEASIDE – Life can be incredibly lonely and difficult for people suffering from lupus and other chronic autoimmune diseases such as fibromyalgia.

For Ilwaco, Wash., resident Donna Magnuson, having lupus (systemic lupus erythematosus) for the past 18 years means her formerly active life is on hold, perhaps permanently. She began having joint pain, weakness in her arms and legs, dry eyes, mouth and skin after a bout with mononucleosis which she thinks triggered the disease.

She is just one of many Pacific and Clatsop county residents who must cope with devastating autoimmune illnesses in the region. Patients like Magnuson and Sheila Sanderson of Ocean Park, Wash., have been forced to create their own support network.

The Northcoast Lupus and Fibromyalgia Support Group was founded 20 years ago to help people confronted with the difficult-to-deal-with diseases, which affect mostly women. But just getting to the meetings, held at Providence Seaside Hospital, is a major chore, especially for people on the Long Beach Peninsula.

Getting to the meetings, though difficult, can be helpful, if only to provide social contact with other people suffering from the painful symptoms. “The meetings force you to go out,” Magnuson said.

For the many sufferers of fibromyalgia, the support group can also be a lifeline. Fibromyalgia, formerly a syndrome, was recently officially declared a disease.

Complex diseasesMagnuson has overlapping autoimmune diseases – painful arthritis in her feet and calves, fatigue, chronic nausea, dry eyes, mouth and skin, chronic esophagitis, pain in most of her joints and muscles, achy all over, difficulty with memory and concentration, and migraine headaches, all of which interfere with daily life. In addition, like most people with lupus, she has numerous diseases such as Sjogren’s Syndrome, Hashimoto’s, inflammatory arthritis, degenerative disc disease and ruptured disc in her lower back and sleep apnea. She has not had a pain-free day since 1988. Medication takes the edge off but never takes it away completely. Not all people with lupus have all the additional diseases but most have some of them.

It’s possible there’s a genetic cause, too. Her aunt had a multitude of autoimmune diseases very similar to what Magnuson has. Also, her son has fibromyalgia and she’s sure her mother had some autoimmune disease because she suffered from chronic pleurisy, pneumonia, dry eyes, mouth and skin, etc.

“It’s a fine line,” she said. “I’m either too sick to push myself, or the best I feel is what someone else would feel with a low-grade flu. It’s hard to know from day to day if I should push myself or go ahead and take it easy and hope tomorrow is a better day. Sometimes when I push myself I crash and end up spending several days in bed. “The biggest thing is coming to terms with all the things I used to do and can’t do any more. I was really active – hiking, tennis, swimming, activities with my daughter. I walked five miles a day. Now it’s just too hard.”

Magnuson takes about 20 medications just to keep the pain at bay and the diseases close to manageable.

One, prednisone, keeps her from having life-threatening problems, has serious side effects and puts her between a rock and a hard place. She’s gained a tremendous amount of weight due to it, it thins the skin, causes easy bruising, yeast infections, diabetes, heart problems, etc. Her doctors are constantly having her taper her dose to keep her from suffering some of these side effects. Every time she gets to a certain dose, she crashes and has to increase her dose again, starting the cycle all over.

“I’m hopeful,” she said. “I’m seeing a doctor in Vancouver who is giving me nutritional infusions that were helping. And I’m getting infusions of MSM for my pain, which also has helped.

“I’d love to be able to take art classes,” she said, “but I can’t. And I’d love to do volunteer work, but I can’t be on a regular schedule because I never know how I’m going to be feeling. I feel bad just about every day. Some days are worse than others and I have to stay in bed all day. I feel physically sick, like I have the flu, and I can’t drive long distances for doctor appointments. I’ve tried, but I have a hard time getting home.”

One of the worst effects on victims of chronic diseases like lupus or fibromyalgia is that they feel “invisible.” Looking healthy on the outside and feeling lousy on the inside makes it difficult for people to understand just how painful lupus symptoms are.

“It’s very frustrating. People think if I’d just go ahead and push myself, I could do more,” Magnuson said. “But I can’t push through when the fatigue gets to a certain level. People who haven’t had fatigue think it’s like being very tired. It’s different and when it gets to a certain level it’s just not possible to push through it. I look okay (sort of), so people think I’m complaining about nothing and I’m not seriously ill.”

Friends and family are affected, too. “My husband, Matt Winters, and my daughter, Elizabeth, have to deal with my illness, too,” Magnuson said. “My husband has to do almost everything. It’s very hard on them. My daughter worries that I’m going to die. She is very sweet and compassionate though and doesn’t complain when I can’t do things with her because I don’t feel well enough. It’s hard for me to ask for help and I feel a tremendous amount of guilt for not sharing my weight in the family. I’m not a lazy person. I used to be dynamic and energetic and interested in so many things. Lupus just wrecks all that.”

Sheila SandersonSheila Sanderson of Ocean Park, Wash., has had fibromyalgia for 20 years. The disease was triggered by a hormone imbalance that created a shock to her body and tipped doctors off to what she had, she said. “In the ’80s, I went off the deep end with pain and depression and was starting to sleep too much,” she said. “I started finding places to hide – the closet, the bathtub.” About three years after moving to the Peninsula in the mid-90s, she went to the late Dr. Tom Valentine, a rheumatologist at the O’Donovan Clinic in Seaside, who diagnosed her.

There’s no single test for fibromyalgia. Symptoms, which can be severe and disabling or cause only moderate discomfort, are aching and burning pain in muscles, tendons and ligaments with different parts of the body affected at different times. Other symptoms can be fatigue, bruising easily, headaches, lightheadedness, abdominal discomfort, numbness, chest wall pain, a high startle response and restless leg syndrome. And, there’s what Sanderson calls a “fibro fog. I forget what I’m saying and get lost in the middle of a conversation. I forget more than a normal person and start thinking that two plus two equals seven and nobody can tell me I’m wrong.”

Like Magnuson, Sanderson takes numerous medications. Many people with fibromyalgia seek help in alternative medicine such as Chinese herbs, acupuncture and chiropractors.

“Almost all people with fibromyalgia are ‘Type A’ people,” Sanderson said. “They’re great at their job, perfectionists, full speed ahead all the time.” She said before fibromyalgia she worked for cruise lines doing documentation for passengers, itineraries, organizing buses and was a purser on the Queen of the West Columbia River cruises. “I found I couldn’t do it anymore,” she said. “I was afraid I’d send people to the wrong place.”

Donna WrightDonna Wright, of Astoria, was a teacher before being diagnosed with fibromyalgia and still teaches English writing at Grays Harbor College. She said a head injury in 1997 triggered the disease.

“I started sleeping all the time. Doctors gave me different diagnoses but I didn’t get better. I had lots of pain.”

She, too, saw Dr. Valentine, who diagnosed fibromyalgia and saw that she got into the Oregon Health Sciences University fibromyalgia clinic and saw an occupational therapist, had myofascial massage and water therapy and saw a psychiatrist. “Most people with fibromyalgia see a shrink,” she said. “It was a great relief when it was classified as a disease about three years ago. We knew it was all along. Now it’s covered by insurance.”

It doesn’t help that there is no rheumatologist practicing in Clatsop, Columbia, Tillamook, Pacific or Wahkiakum counties and adds insult to injury that, while suffering the debilitating symptoms of these diseases, patients are forced to drive long distances to see a doctor. The closest is in Longview.

Like Magnuson, Sanderson says the disease affects relationships with family and friends.

“They try to understand, but really can’t,” Sanderson said. “We have pain we can’t account for and exhaustion. It’s an illness that cuts us off from family, friends and the rest of the world.”