Cynthia Armistead, 41, is in nearly constant full-body pain. She has fibromyalgia, chronic fatigue syndrome and severe arthritis, forcing her to take morphine to get through the day. And, on a pain scale of one to 10, a good day is a six.
Nevertheless, the Decatur, Ga., woman is determined to maintain a healthy sexual life with the love of her life, a man she met 10 years ago. And he is just as determined to make the adjustments necessary to keep their relationship going strong.
"There are times when the air on my skin hurts," Armistead says. "It's not just a disease of pain, it's a disease of hypersensitivity."
Doctors call this allondynia. It means that the brain interprets neutral or pleasant stimuli —, like gentle touch or running water from a faucet —, as pain. Patients also commonly experience hyperalgesia, which is an extreme reaction to painful stimuli.
Dr. Theresa Lawrence-Ford of Duluth, Ga., describes putting moderate pressure on one's fingernail bed to illustrate.
"It would take a patient half as much pressure to experience the feeling as someone without fibromyalgia," she says.
Women are about nine times more likely than men to experience fibromyalgia, according to the American College of Rheumatology, which also estimates that 6 million Americans, of 2 percent of the general population, are afflicted.
As for Armistead, the chronic pain and fatigue she suffers has forced her to abandon her career as a technical writer. But she has not given up on joy.
Ten years ago she fell in love with a man who is understanding of her condition, and willing to do whatever it takes to make their relationship continue to work.
"You really have to focus on the non-physical aspects of love when you're in a relationship with a person in chronic pain," says her partner, Sam Chupp, 40. "You have to concentrate on the mental and spiritual bond in order to carry you through times she has a flare [the worst period of pain]."
Armistead says that "25 percent of the time I'm in flare. When I'm in flare I don't even want to be looked at hard."
Nevertheless, says Dr. Cynthia Lawrence-Elliott — who's in private practice with her sister, Lawrence-Ford — when it comes to this disorder, it is important to follow what she calls the ABCs of a healthy sensual life.
"A is acceptance and adaptation," says Lawrence-Elliott, who once treated Armistead. "B is for learning the basics and for doing what it takes to boost one's self-esteem. Ignorance coupled with fear are common enemies of sexuality. C is connect and challenge."
By connect, Lawrence-Elliott means that one must shed any shyness when discussing one's body with a physician or partner. By challenge she means that it's necessary to challenge oneself to do so, even when the issue is embarrassing.
Armistead and Chupp seem to be following the doctor's recommendations chapter and verse. No matter how much her body hurts, Armistead says she wants to maintain some version of intimacy with Chupp. To this end they have dedicated two nights a week to spending time alone with each other, sacred time that they guard very strictly.
Armistead does everything she can to feel good on their scheduled nights. She refrains from shopping or going to appointments on those days (that would make her too tired), and her teenage daughter (from a previous marriage) goes out with friends.
The challenging part is that even though they can schedule time for each other and stick to it, there's no way to schedule random flare-ups. The key, Chupp says, is not to set specific goals for the night.
"We just say we are going to enjoy each other, no matter what it turns out to be," he says. "Cuddling is a wonderful thing and can happen a lot more often than sex."
"I'll put it this way. Sometimes you want to share a big fancy dinner with her, but it turns out you just have to have a sandwich by yourself," he says.
The estimated 12 million American couples who deal with this disorder may be grateful that Chubb and Armistead are not overly shy in answering questions about how one makes love to a partner who has what Armistead calls "skin hunger," which is the normal need to be touched.
"I haven't been able to stand a massage for years," she says. "We've learned to be very gentle," she adds, noting that hypersensitivity is not always a bad thing. "I take my morphine. A warm bath loosens my muscles. But mostly, being aware, being able to say — well, it's important in any relationship to be able to say — 'that's a bit too hard' makes all the difference."
It also takes a creative mind, says Chupp. Happily, they are both good storytellers. They have shared story nights where they say they inhabit imaginative worlds peopled with characters of their own creation.
"It's not super kinky or like Dungeons and Dragons," he says. "It's a way to take our minds off her pain. One thing I really like about Cynthia [his partner] is that all you have to do is look at her and she blushes."
Chupp has advice for those whose partners suffer from chronic pain. "Millions of pillows. Low impact positions. And realize this is not something you can do in ten minutes — it takes hours and hours. You have to think of it as an entire evening."
Sounds like a dream for millions of women —, with or without chronic pain. And it's doctor-approved. "Sex can decrease pain because it releases positive hormones like endorphins," Lawrence-Ford says. "Endorphins decrease physical and emotional distress, enabling the patient to reclaim her sensual life and sexual intimacy."
Armistead and Chupp agree. "You have to scale back your expectations from high school —, but high school was never this good," he quips. "When you are in love with someone and she is in pain all the time, when she wants to have sex with you in spite of it, it means she really wants to have it. You feel chosen and special."