It’s hard to feel sexual or focus on sex when coping with pain and exhaustion. That’s why, as the health activist Julie Ryan wrote, “For many of us, fibromyalgia and sex go together like oil and water.” Fibromyalgia, which affects about two percent of adults (the vast majority of them women), seemingly alters the way the brain processes pain, causing widespread and chronic musculoskeletal pain and stiffness. It also causes frequent bouts of fatigue and has been linked to additional symptoms or conditions, like anxiety and depression. Some people with “fibro” claim that it makes them hypersensitive to all touch, and can turn once pleasant sensations painful. Many painkillers and antidepressants people use to blunt their symptoms can lower their libidos as well.
Still, many people with the condition find solutions to help them minimize their symptoms and focus on and enjoy intimacy, including combinations of medication, lifestyle changes, and physical therapy. (Experiences of fibromyalgia are diverse, so these regimens can vary drastically.) Those still dealing with notable pain often experiment with positions and forms of touch until they find something that works for them.
Experts are still struggling to understand the causes and course of fibromyalgia—why it sets in slowly for some and quickly for others, after physical trauma or infections for some and after periods of extreme stress for others. Given the lack of a baseline understanding of the condition, it's unsurprising that research into fibro’s effects on sex is also limited, and that many clinicians aren't equipped or aware enough to talk about this topic. This knowledge and support gap can leave people with fibro and their partners feeling lost and confused.
In recent years, people with fibro have started to publicly share their experiences with sex and their advice for maintaining an intimate life despite the challenges of chronic pain, fatigue, and sensitivity. VICE recently spoke to Melissa, who developed fibromyalgia symptoms and was diagnosed with the condition earlier this year, and her partner Alex about their still-evolving sexual dynamics.
Alex and Melissa's names have been changed for their privacy. Interview has been edited for length and clarity.
Alex: We started dating in 1999 and got married in 2004. Since then, our sex life has gone through dry spells and surges. When Mel was 100 percent busy with work, sex was less likely. But I would say we were middle-of-the road in terms of the frequency of our sex.
Melissa: Our sex was a little rough. I liked things like spanking—just roughness in general.
Alex: Yeah, she didn’t like me going at what she called “sloth speed” [during penetrative sex].
Melissa: In March, it looked like I got a COVID-like infection, so I went to the emergency room. They told me I probably had it, but that they couldn’t do a test because they were saving them for the most serious cases and I had a pretty mild go of it. They sent me home and told me to get some rest. My COVID symptoms got better. But then I just started feeling … pain.
I thought, Maybe this is COVID body aches. But it was different—like a vise getting a hold of me. I’d be stuck in bed all day with pain so bad I couldn’t move. At first, my doctor said, "It sounds like you’re just fighting a viral infection." But I’d wake up and feel like I had some energy, then do one load of dishes and be done for the day, tired and in pain.
Alex: She said that her skin felt like it was on fire, so even being touched was too much. Sometimes, I just touched her leg to say hi, and that was a big no-no. In March and early April, we only had sex once, and she was frustrated because I was being too rough.
Melissa: I talked to my doctor again and said, “It’s just pain everywhere, gripping me from the top of my head down to my toes.”
She was like, “I think you have fibromyalgia,” and told me about the condition. She told me it takes at least three months of being in that kind of pain to diagnose it, but she wanted to start me on medication right away. I feel really lucky, because I know some people go years experiencing that level of pain without a diagnosis or treatment.
Alex: I’d heard of pain conditions like chronic migraines, but I’d never heard of fibromyalgia. From the start, Mel tried to educate me as much as she could about the condition. She told me that her goal on a good day would not be to feel great, but just to feel normal. She told me that it could get worse over time. We’ve just worked based on those expectations.
I learned to stop pushing myself so hard. I cut back my [work] hours so I could get an extra day of rest every week. Instead of fighting my exhaustion when I come home after work, like I used to, now I usually take a nap right after. I wake up with body aches all over. But those are easier to deal with than the pain I felt early on.
Alex: During the pandemic, I’ve been working from home and taking on more of the house duties so she can concentrate on managing her pain and recovering from flare-ups—that’s a minimum of five days of doing nothing, including intimacy—because the pain is just too much. She’s more conscious of the stresses around her, and the family is more conscious of them, too.
Melissa: Cannabis is legal where we live, and it helps me with the pain and relaxes my mind. Without it, I think we would hardly be able to have any other kind of physical intimacy at all. But now my skin, my whole body, is just really sensitive. So, our sex has to be softer, gentler.
Alex: It’s slower, too. Lots of times, I’m going sloth speed and she says, “You’re going too fast.” We’ve had this gradual realization of, “We can’t do that anymore,” or, “We can’t do this right now.” We really had to re-evaluate everything that we do in our sex life—and beyond.
Melissa: Yeah, every day we have to re-evaluate something [based on my fatigue and pain]. But we’ve always been very good at talking about our sex life in the moment and beyond. We do this post-game thing, talking about what we liked or wanted more of the last time that we had sex.
Alex: Mel is very vocal during sex, too. She lets me know—not in a critical way—if I’m hurting her, or if she’s tired, and I roll with that. But we’ve been talking more about sex now.
Melissa: Or, I’ll just move his hand, push him where I want him, get on top and take charge.
Alex: I’m trying to be more conscious of how she’s doing in the moment now—to recognize if she’s in pain. Is she clenching up? OK, then I’ll back off. And I don’t try to initiate sex anymore.
Melissa: Yeah, now what we do is: If I lay down at night, our kids are asleep, and I have time to relax, I let my mind wander. It usually goes to sexy fantasies. If I get turned on enough, I roll over to Alex. If he wakes up and he’s down for sex, then we’re like, “Sure, let’s go.”
Alex: If she gets at least one full day of rest, and she hasn’t had a flare-up recently, then there’s a higher likelihood of that. But if she can’t get at least five days of rest after a flare-up, there’s no chance of us having sex anytime soon. We have sex at least two, up to five, times a month now.
Melissa: We focus more on gentle touching now. With the cannabis, that’s erotic in itself for me.
Alex: Sometimes, she doesn’t want to be hugged because her skin’s on fire, so it’s just about being next to her. For me, that’s OK. I’ve always got masturbation, and Mel will just say, “Go knock yourself out in another room if you want to, then come cuddle when you want to.”
Melissa: When we are intimate, it’s almost like fibromyalgia can heighten the experience. Before, when he touched me, it was nice. Now, when he touches me in one spot, it feels like he’s touching me everywhere. Sometimes it’s too much. But sometimes, I’m just there, and it’s nice.
I actually like penetration more when we’re having sex now, too. It used to be the least sensitive aspect of sex for me. Now, I can feel it more intensely and it helps me orgasm.
Alex: In July, she liked more foreplay, but recently she’s more like, “Nope, don’t touch me, my skin is on fire, just go for the penetration.” I sometimes worry that her condition will get more intense. But some people have it a lot worse than we do, and I signed up for the long haul. I just go with the flow at this point.
Melissa: If I couldn’t have intimacy with Alex because my fibro got worse, that would be scary for me. But even just being able to be as close to him as I can get is, for me, enough.
Alex: We can only do what we can do.
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