When Sex Is A Pain

Discussion in 'Fibromyalgia Main Forum' started by JLH, Jun 4, 2006.

  1. JLH

    JLH New Member

    NOTE: I hope not to offend any with this post..but this is a fact of life for many... How to maintain some type of sex life while dealing with chronic illness...



    A handful of Sex Drive forum members asked me to research chronic pain and how it affects libido -- and, more importantly, what can be done to address the obstacles to desire and pleasure so they can be intimate with their partners.

    "My partner's interest in sex is directly related to how bad her fibromyalgia is acting up," says one.

    "My partner is on a morphine patch for the rest of his life," says another.

    "My partner has chronic back pain (it comes and goes) due to a car accident," says a third.

    I'm not surprised to find a number of folks in the forum who face additional challenges in their sex lives. Where else are they going to find such frank and positive discussion of technologies that help us improve our sexual relationships?

    I first called Karl, a body worker and healer based in Austin, Texas, who gave me the best massage of my life the last time I was out there. I'm a chatty massagee and I remembered talking about both sex tech and fibromyalgia, so I knew he'd be a good source of information.

    Fibromyalgia is a condition characterized by chronic inflammation and pain in muscles, joints and tendons. I don't have it, but he wasn't the first health practitioner to ask me if I did. It's a difficult condition to pin down.

    Fibromyalgia is considered a "made up" syndrome by some, but it's been described in medical literature since the 1700s. And if you've ever met someone who has it, you'll immediately realize that this is not something people invent to get attention.

    Karl works with many clients who deal with chronic pain. He is quick to point out that every person experiences pain differently, just like every person's sexuality is unique. That's why it's impossible to recommend any single solution for individuals or couples trying to keep physical intimacy in their lives despite the pain.

    As you might expect, being in pain all the time is exhausting. It has a debilitating effect on the libido, as do pain medications. Chronic pain often causes depression, frustration and anger, which adds strain to the relationship on a number of levels, including sex. And while sex helps with relaxation, it's hard to drum up desire when you're already stressed and tired.

    Even if a partner wants to engage physically, an extremely sensitive neurological system can inhibit the pleasure response. A touch that feels ticklish or mildly tender on most people might be excruciating to a person with fibromyalgia.

    So how do you have sex?

    It turns out that sex, even without orgasm, triggers endorphins that ease pain and relax the body so that sleep becomes easier. It might be difficult for a person to have interest in sex when dealing with chronic pain, but if you can bring yourself to have some sort of intimate contact with your partner, it will benefit not only the relationship, but pain management as well.

    Karl recommends that couples dealing with pain learn about tantra. "What tantric sex really boils down to is better communication," he says. "Staring deep into each other's eyes. Learning what it means when a nerve jumps, a muscle twitches. Really getting to learn your partner."

    He reminds partners to be aware that they might be causing pain when they intend to create pleasure. "Sexuality has to be more empathic," he says. "If you can listen to their body and their breath, you can stay much more tuned in."

    He suggests replacing the goal of orgasm with the goal of pleasuring the partner with the pain condition. The more a person can feel pleasure instead of pain, the more likely the libido will rise to the occasion.

    "These are all just good sex rules in general," he says.

    Cory Silverberg, co-founder of Come As You Are, is a sexuality educator with expertise in helping people find sex toys to alleviate difficulties with mobility, reach or pain. He, too, says that it's hard to recommend general solutions, because nothing about fibromyalgia or painful conditions are general.

    The main problem with nurturing intimacy, Cory says, arises when couples stop talking about sex. Often, the partner with the pain loses interest in sex, then gets angry and frustrated, or begins to feel alienated or ugly. They feel they can no longer have positive sensual or physical experience in their lives, and they withdraw.

    The other partner stops trying to initiate sex because they feel rejected, and they start to believe the partner doesn't want to have sex with them, rather than not wanting sex at all. The relationship falters under guilt, anger, shame and both partners feeling unattractive or unloved.

    "Just saying, 'I wish I did want to have sex, but I don't,' can be very therapeutic," Cory says.

    Fortunately, with patience, acceptance and courage, couples can find ways to be sexually intimate -- especially if they expand their definitions of sex.

    Sex can be a lot of different things, from looking at erotic content together while stroking each other's skin to whispering fantasies in each other's ears to playing an online erotic game. (You don't have to be able to hold the controls or type on a keyboard to direct a game character when you play together. I co-played The Legend of Zelda for years without ever touching a controller.)

    "You have to decide that sex is part of the glue of the relationship, and that you'll honor that in some way," says Cory. "Maybe once a week you will make a date to talk about sex."

    "When my fibromyalgic clients tell me they want to start having sex again, I advise them to start with diet and stress therapies," Karl says.

    Massage therapy is good for reducing stress and inducing relaxation so people can sleep, assuming the body worker knows how to work with the person's particular needs. Acupuncture is hit or miss with fibromyalgia, "about 50-50," according to Karl.

    If the person can tolerate it, cold therapy is good for reducing inflammation. In general, fibromyalgia responds well to heat, for relaxation.

    Karl often suggests Thai massage, which one of my friends jokingly referred to as "lazy man's yoga" but which works wonders for bonding with your partner, pain or no pain. Thai massage involves a series of guided stretches, where you move your partner's body into the postures.

    "Stretching is a huge priority," he says. "It's the closest thing to massage for yourself. When you do Thai massage with a partner, it increases intimacy, communication and understanding between your bodies, which adds to your general relaxation and the health and well-being of you both."

    Cory says that progressive doctors will sometimes recommend a brief vacation from medication, just a few days, to let the libido bounce back enough for sex.

    "There are no easy answers," Cory says, especially when both pain and the medications that control pain have such a devastating effect on drive. "But we have to acknowledge that the brain is the biggest sex organ. What's sexy is what happens in our minds."

    While my own chronic pain is limited to my hands and forearms, in the past year my relationship has been through a kidney stone and associated renal problems (me) and an unexpected high-speed dismount at the motorcycle track (the boyfriend).

    Both times, we spent about two months unable to have intercourse, and learned the truth of the adage "use it or lose it." It took mental dedication and emotional work on both our parts to bring the physical components of our intimacy back to life.

    If you don't make sex -- in whatever form it takes for you -- a priority, no therapy or technology can make it better.

  2. gladone

    gladone New Member

    bump so others can find and read
  3. jenni4736

    jenni4736 New Member

    Sorry...felt the need to make a joke...Its a serious topic but the women may understand!

    O.k. so the released endorphins after sex make it easier to sleep....

    BOYYYYY ...the men must release a lot.....This could explain why they fall asleep so quickly after sex....


  4. pam112361

    pam112361 New Member

    I just had to comment. I opened this up just to scan through it and it turns out that the Karl in Austin is in all likelihood by brother-in-law.

    Talk about a small world!

  5. hugs4evry1

    hugs4evry1 New Member

    Is he single????


    Nancy B.

  6. Jeanne-in-Canada

    Jeanne-in-Canada New Member

  7. pam112361

    pam112361 New Member


    He is married with 3 children and 1 on the way.


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