The Fibromyalgia Circle of Hope
When Fibromyalgia Affects Your Sex Life
Sex. It’s not a dirty word, yet it’s a topic we seem to want to avoid instead of deal with. We ignore it and try to pretend that the giant purple elephant is not in the room.
When I talk to friends with fibromyalgia, the topic of sex rarely comes up, but when it does, it’s always in a negative light.
“He wants it, but I just can’t.”
Occasionally, I hear from someone who began their marriage with fibro, and sex was never a big issue because it was never a part of the relationship. However, I’ve found that’s rarely the case. Many of us started off somewhat healthy, with at least some level of sexual drive and enjoyment. Relationships often start with lots of sex in the beginning and then might slowly decrease as the relationship matures. This can be true regardless of health issues. For those of us with fibromyalgia, however, sometimes the decrease is sudden, not gradual. Just as with everything else in our lives, we may have gone from 60 to zero in no time at all.
Why does fibromyalgia have such a big impact on our sex lives?
Pain: I believe the biggest reason our sex lives are affected by fibromyalgia is simply pain. Often it hurts even to be touched. This affects not just our sex lives, but our overall intimacy. When you can’t even be touched by the person you love, it’s really hard to have any sort of physical intimacy. No hugs, no kisses! It sucks. It’s not like we want this; we want to touch the people we love, we want to hold them and have them hold us. The worst part is that we are in a state where we need that the most, but we can’t have it. Even if we can handle basic touch, our muscles are often so sore that the positions required for sex are difficult and often painful. And we haven’t even gotten to insertion and what sorts of pain may be going on there.
Fatigue: Chronic pain is the hallmark of fibromyalgia, but fatigue comes right along with it. Honestly, most of the time we just might not feel like doing anything, and sex is the last thing in our minds.
Depression: More often than not, after dealing with pain and fatigue for months on end, depression can follow. Without depression, we might think more about the impact of fibromyalgia on our sex lives, but depression can actually affect sexual desire as well. When we experience depression, sometimes we don’t care about anything, including sex.
Honestly, in my opinion, fibromyalgia and sex go together like oil and water. They don’t play well. Even if we can make it through sex without being in agony, we often end up so worn out by it that we can’t do much when we are done. And, this doesn’t even take into account the many other co-related issues that often come with fibromyalgia that impact sex, as well, such as endometriosis and vulvodynia.
So what can we do about the impact of fibromyalgia on sex lives?
Talk to your partner. It is so difficult to be vulnerable and honest about what is going on with our bodies. However, being honest and open with your partner about how fibromyalgia is affecting your desire for sex, or causing you pain during sex, can help them understand and lets them know you aren’t rejecting them. When we turn down sex with our partner, they might see it as a personal rejection. They could turn it inward, thinking we don’t find them attractive anymore or some other such thing that isn’t true. We need to be honest with our partners.
Find other ways to be intimate. Being vulnerable is a good start towards creating new intimacy, but we all still need physical touch. If you can handle being touched, allow them to do so in any way that works for you. Even if all you can do is lie naked beside each other in bed and have a conversation, that’s something. Kiss and hug your partner daily (if you can do so without pain). Intimacy isn’t just about sex.
Talk to your doctor. Be open with your doctor about how your pain and fatigue are impacting your sex life. If you have pain during intercourse, seek a pelvic pain specialist. Your pain might not be “just fibromyalgia,” and there may be other treatment, such as physical therapy in some cases.
There, I said it. It’s out there. I have fibromyalgia, and sex hurts. It sucks. I hate the impact it has on my marriage, but I love my husband.
What ways have you found to combat the impact of fibromyalgia on sex? I’d love to hear how you tackled this tough issue in your relationship.
A version of this post originally appeared on Counting My Spoons.
By, Julie Ryan 4-06-2016
Blending Intimacy and Fibromyalgia
by Gina Roberts-Grey
Sure, fibromyalgia means you're often achy and tired. But this condition doesn't necessarily mean the end of your sex life — if you don't want it to.
Maintaining a fulfilling sex life poses a major challenge for people who suffer from fibromyalgia. That's because the main symptoms of the disorder — pain at the slightest touch and debilitating fatigue — often turn a pleasurable encounter into a chore. These afflictions, experts say, lead many to feel increasingly isolated from their partner.
"Not being able to enjoy normal, healthy physical exchanges can be demoralizing," acknowledges Gregory Petersen, Ph.D., a health psychologist at Northwestern Memorial Hospital's Wellness Institute in Chicago. But fibromyalgia needn't spell the end of romance or even sexual intimacy, he insists. Rather, keeping your love life going is all about managing your moods and knowing when the time is right.
Be Creative and Adapt
Intercourse isn't the only way to be intimate, Dr. Petersen observes. "If fibromyalgia symptoms temporarily prevent you from having sexual relations, look to other ways to build and strengthen the bond with your partner," he advises. For example, try sharing a romantic book or movie until you're able to reconnect physically. Or discuss the things the two of you enjoy most about your intimate moments together.
You can also experiment with different sexual positions. Some of these may minimize pain so that your fibromyalgia doesn't interfere with intimacy. Talk to your partner about which spots on your body are the most sensitive or sore, and explore ways to keep pressure off those places. "Putting pillows under a sore hip or arm can help significantly," Dr. Petersen says.
Know Your Window
Dr. Petersen also suggests keeping track of the times of day when you're most likely to be at your best. It might be that you feel good first thing in the morning, or after taking a relaxing bath. Or perhaps your symptoms are best controlled an hour or so after taking a pain reliever. "Capitalize on the moments when you're able to control your symptoms," says Dr. Petersen. "Those are key times to enjoy intimate moments."
Be Honest and Open
Whatever else you do, be candid with your partner. "Many people with fibromyalgia think they need to hide their symptoms," says Dr. Petersen, "Just remember, there's no reason to try to be a hero." In fact, that's the last thing your partner would want you to do — and pretending to ignore the pain won't help anyone.
Reassure your partner that your level of attraction remains as high as ever. That way, he or she will be less likely to feel rejected when you're physically not up to sexual intimacy.