The key to coping with fibromyalgia is accepting that the problem is chronic, learning how to minimize the pain, and finding the good things within a painful life. The reality is that the pain will not go away. The challenge is to learn how to lessen it and create a life beyond the pain.
"I used to be a type A personality," admits Kathleen Wisz, 68, from Woodridge, Ill. "But for the last 10 years I have learned to live with fibromyalgia. I have learned to enjoy all of the little things in lifemy grandchildren, sewing for them and teaching them sewing. In fact, I've gotten so many good things out of it that it makes the pain doable."
A very tough mountain to climb
Many people with fibromyalgia find this extraordinarily difficult and depression is common; but others are able to finally tap into a kind of acceptance and look for life's pleasures where they can.
It's not easy. Waking up every morning exhausted (sleep disturbance is one common symptom) is simply debilitating. To then face a day of pain can affect your entire identity.
Lynne Matallana, cofounder and president of the National Fibromyalgia Association (NFA), says "You lose your self-confidence and you end up seeing yourself as a sick person. You see yourself as somebody who's suffering from something that's abnormal. And people with fibro tend to use the word 'normal' a lot: 'I just want to feel normal.'"
"I'm strong even though I have limitations"
In 1998 Carolyn Nuth, 65, of Baltimore, had no idea why she was experiencing so much pain all over her body. She thought it was arthritis, because her mother and grandmother had had it. But she finally went to her doctor in tears. "I really was at a point where I didn't want a life like this," says Nuth.
The diagnosis of fibromyalgia was something of a relief and steroid shots every few months helped bring the pain to a manageable level. But her new reality was a life of pain. She had always been busy, handling stressful jobs without paying too much attention to minor aches and pains. Suddenly she felt like an invalid. Like many other sufferers, it was a struggle for her to realize she could still have a productive life.
"I learned that I'm strong and even though I have limitations, I can still put one foot in front of the other. But I'm just smarter about it," says Nuth. "I used to be able to garden almost all day. Now I have to spend an hour and that's it. If I push myself beyond my limit, I will pay for it. So I've learned to limit what I do."
Marriage and friendships can be affected
Like many, Nuth also had to face the toll that the syndrome initially took on her marriage. "Because people can't see pain, they don't understand it. To my husband I looked the same as I always looked," says Nuth. "When I couldn't clean and do all the things I usually did, he did not understand at all; it took a long time before he came to understand."
Matallana says that relationships of all types can be fundamentally changed by the illness, and not everyone in a patient's world can handle the new reality.
"I know I've had so many friends that just didn't ever see me again after I got sick. They just disappeared out of my life, and that still is something that breaks my heart."
She fields calls at the NFA every day. "I've had husbands call up and say, 'You know, I'll support her, but good grief we don't have a sex life anymore, and I can't live with that.' I've also had employers call up and say 'I'm trying to make this person be able to work here, but gosh, their fibro fog. Every time they write a number down, they do it wrong. I just can't possibly continue to employ this person." (To learn how to manage your condition at work, visit our interview with Jennifer Jaff, an insurance and disabilities attorney, who explains how to manage chronic pain in the workplace.)
Taking action locally
Phyllis Talarico's way of coping was to start a support group near her home in Yorba Linda, Calif. When she was first diagnosed in 1994, Talarico, 61, would walk around her home crying. The tipping point came one day when she realized that her adult son was no longer attending her Sunday macaroni dinners.
"I said, 'Why aren't you coming?'" says Talarico. "And he said, 'I can't watch you cry'. He couldn't face it. I realized what was happening: I was wallowing in my own self pity."
Talarico pulled herself together and took a class about the illness through the Arthritis Foundation. She found herself in a room of 30 people who understood. She met two "wonderful ladies" who agreed to meeting monthly, and today those chats over coffee have evolved into a full-fledged support group with 200 members.
For Talarico, who now works for the NFA as patient assistance coordinator, acceptance allowed her to move forward.
"We all have something that we're dealing with," says Talarico. "You have two choices: Either you deal with what you are given, or you throw the dirt over your face and say it's all over. I chose to deal with it. Life is too precious. It really is."