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."