For Sylvia Peterson, fibromyalgia strikes without warning – when she's cooking dinner, shopping for groceries or even making love to her husband. The burning, roving pain made her life unbearable, until she got treatment. Find out how one fibromyalgia patient found relief…
Until seven years ago, Sylvia Peterson, 49, of Everett, Wash., was a busy wife, mother of two and licensed practical nurse.
Then, fibromyalgia hijacked her life. She couldn’t pick up her kids or get out of bed. Worse, she was hiding her pain.
Welcome to the world of a fibromyalgia sufferer. About 10 million Americans have this incurable musculoskeletal disorder and 75%-90% are women, according to the National Fibromyalgia Association.
The disease is tough to diagnose. There’s no test to confirm it. And no two women have the same symptoms, which include sleep disturbances, memory problems, pain and fatigue.
Plus, fibromyalgia mimics other conditions – from mononucleosis to rheumatoid arthritis, according to the Mayo Clinic – and doctors often misdiagnose it or dismiss women’s complaints.
That’s what happened to Peterson. Her doctor didn’t detect the disorder and she lived with the symptoms for several more months.
“Some doctors don't understand it and believe it’s just emotional,” Peterson says. “It's real.”
Today, Peterson is nearly back to normal. Find out how she got her life back.
When did fibromyalgia first affect you?
About seven years ago, I was in nursing school and under a lot of stress. As I was studying one evening, I was suddenly hit with severe flu. I passed out from dehydration and was taken to the hospital.
That's when I began to have [fibromyalgia] symptoms. I was tired and I felt bad all the time.
They were mild at first and I thought they would go away. But they got worse. Two years later, it was just unbearable. I could barely get out of bed in the morning, and I was dragging myself around, barely making it through the day.
What did it feel like?
Everything was just a huge effort, from getting up in the morning, to personal hygiene [and] walking down the stairs.
I left a lot of things undone because I was so exhausted. I’d feel achy and my muscles would burn. I’d wake up feeling as if I'd never slept.
[Symptoms] can really vary for people. For me, [the pain] moved around and got much worse over time.
What was it like at its worst?
I was nothing like my old self. I used to be really active. I took the children to all their activities, gymnastics, play dates and the library. I had energy to exercise.
[After I got fibromyalgia,] I'd be in a grocery store halfway through my list and suddenly have to leave. I'd feel like I couldn't buy even one more thing.
It was embarrassing. I couldn't make plans with people because I never knew when it would get really bad.
And it was scary, not knowing whether I'd make it through something I was doing.
How does fibromyalgia affect you mentally?
There were such low, dark times, and I got so depressed [that] I really thought about ending it all.
You sometimes can't think or focus, and you have to search for words. You think you have Alzheimer's. It's horrible and embarrassing.
The pain can make you feel crazy, because you hurt in one place, and you tell someone, "The pain is here." Then it moves to a completely different place, and they’re thinking, “She must be crazy."
That's what really hurts – when people think that you're making it up.
What would you tell them?
It’s real, and it’s terrible for those who experience it daily. They don't want to live like this. They want to be well. Please listen and be supportive.
How did your family cope?
It was really hard on all of us.
I had a lot of guilt about not being able to do more when I was sick and about draining our family's finances. I really wish I hadn't ignored it and tried to deal with it myself.
I don't know what I would have done if I didn't have my husband encouraging me.
How did it affect your relationship with him?
It made me so tired. When you're healthy you don’t realize that it actually takes a lot of energy to be active. If you're sick and don't have that energy, it totally cuts your sex drive.
The joke among fibromyalgia patients is, "What sex drive?"
What did you do about it?
I talked about it with my husband. It's good to assure [a partner] that it's not about how you feel about him; it's the condition.
My husband understood. We talk a lot. We met in college and have been married for 30 years.
How did it impact your kids?
My children were younger then and it was hard for them to understand what I was going through. They’d ask me to do things for them, and I’d be on the couch and have to say, "I need to lay here, I'm too tired. I hurt."
Sometimes, I'd be crabby. I'll never forget when my son said, "Mom, you never can do anything." I felt so bad about that.
It caused the kids to grow up a lot.
Also, when I was just doing the bare minimum, their father [was] supportive, understanding and helping a lot. He was right beside them when I couldn't do anything. They got a chance to be with their dad more.
Do certain conditions worsen your symptoms?
The main one is cold weather – it makes me hurt and ache all over.
Also, if I do something really active, like gardening, hiking or excessive exercise, I really hurt the next day. You just feel as if you’ve been hit by a truck.
[If I stay] up later with the kids on a Saturday night, I often really suffer the next day. I have a hard time getting up and just feel exhausted.
One of the first things [fibromyalgia teaches] is to budget your energy.
You’re better now. What’s your treatment?
I didn’t really do the conventional. I liked the idea of treating all the underlying problems, such as [poor] sleep [and] infections, with nutrition and moderate exercise.
I'm taking natural sleep remedies and a few prescription drugs to fall and stay asleep. It's important to get 7-8 hours a sleep a night. I'm also on hormone therapy.
Blood tests indicated a low vitamin D level. After getting my vitamin D levels up, my pain decreased significantly.
What else helped?
My sister gave me a book called From Fatigued to Fantastic by Jacob Teitelbaum, M.D. (Avery).
It's a really great book for people with fibromyalgia. It tells you how it affects your body and [treatments] using prescriptions, nutritional supplements, alternative therapies, and dietary and lifestyle modifications.
How are you now?
I can be active.
My kids are in high school, and they're involved in a lot of activities. I can take them to volleyball, soccer, all those things. I can get up and go to work, and come home and fix them a meal.
They’re very happy about it and I am too.
How will you control it in the future?
By making sure I get the rest I need and that I don't overextend myself.
You’ve said treatment costs about $1,000 a month. Is it hard to pay for it?
My insurance covers some expenses, but some things they won't cover because they’re alternative. Still, it was expensive.
What would you tell others suffering with fibromyalgia?
Don't do what I did. Don't keep it to yourself.
Find people who support and understand you. I get so much from just talking to other people who have it. You need emotional and physical support.
Get the book From Fatigued to Fantastic – it will help so much. Get medical help. It can be costly, but worth it to improve your quality of life.
I wish more charities or clinics offered scholarships to help those who can’t afford treatment.
And hang in there!
Treating Fibromyalgia
Like Peterson, some fibromyalgia patients turn to complementary or alternative medicine for relief.
Such treatments – which can be costly and aren't covered by many health insurance plans – can include acupuncture, biofeedback, hypnosis, magnet therapy and vitamin supplements. But their effectiveness hasn’t been proven, according to the National Institutes of Health (NIH). Before trying any alternative therapy, consult a licensed medical physician.
Conventional fibromyalgia treatments include pain medications, antidepressants, muscle relaxants and sleep drugs. The federal Food and Drug Administration (FDA) has approved two drugs to specifically treat fibromyalgia in adults: Lyrica and Cymbalta, which reduce pain and improve function.
For more info on fibromyalgia:
National Institutes of Health
National Fibromyalgia Association
Fibromyalgia Network
How Much Do You Know About Fibromyalgia?
Described by Hippocrates in ancient Greece, fibromyalgia is one of the world’s oldest medical mysteries. The disease – a complex illness marked by chronic muscle, tendon and ligament pain, fatigue and multiple tender points on the body – affects about 2% percent of Americans, most of them women.
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