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Post Secret: One thing you didn't know about fibromyalgia (Hint: The Big O) - #HAWMC Day 10

by Jenni Prokopy, the Editrix

On the 10th day of the WEGO Health (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC)*, in which they offer a blog prompt per day for a month, your humble Editrix has decided to do something completely insane and talk about sex. After all, the prompt is all about the Post Secret community, wherein people reveal secrets about themselves. (Well, usually they get to remain secret about their identity, and here I am just blabbing and YOU ALL KNOW WHO I AM.)

O. My. Gosh. And by O, I mean, you know, O. The Big O.

Not that shopping site, the O. And not that fabulously famous and wealthy talk show host, either. I'm talking about the O.

I'm talking about The Orgasm.

Before I go any further, I want to be EXTREMELY CLEAR. I'm not talking about any of my sexual partners or any of my experiences with other people. Anything I say here is about ME and MY ISSUES ONLY—I need to say that explicitly because it's important that folks don't feel like they're being slighted (or even talked about).

Especially because I'm about to be brutally honest. For folks with fibromyalgia—and yes, friends, in the past that has sometimes include me—it can be hard, if not downright impossible, to have an orgasm.

(Wow. I can't believe I just said that on the internet. I rarely see people talk about this except on private forums!)

There are four major kinds of issues that make it difficult for some folks with fibro to achieve great sex lives that include orgasms. (I'm not saying a great sex life HAS to include orgasms—plenty of people enjoy awesome sex without climaxing—but many people want to have them, and miss them when they're gone.) I've segmented them into physical, pharma, body image, and emotional issues. Now, I'm no doc, and I'm no shrink, but these are what I've identified as the main issues I've seen in my own life and through conversations with many, many women over the years.

Physical issues: Pain, flexibility, fatigue

Let's start with the obvious stuff: Pain. It's really hard to feel sexy when you're in pain, even when you know logically that great sex can help release endorphins that help ease your pain. If you're hurting in a big way, it can be challenging to free your mind enough to relax into a sensual experience.

(But let me come back to that logic point for a second: It is true that a positive sexual experience, even one that doesn't include an orgasm, can generate endorphins that will help ease your pain. Even just cuddling can help. So I always encourage my fellow fibroBabes to at least try something when they're in pain.)

Flexibility is also an issue for those of us with fibro. Over the years I've studied yoga, received a lot of physical therapy, and taken some pilates classes—and I keep a daily practice going no matter how I feel. So I'm still really flexible. But many people with fibromyalgia really struggle with flexibility, which makes many sex positions unachievable, which in turn can make achieving orgasms difficult.

(Over the years, I've counseled friends with this complaint to check out Enabling Romance: A Guide to Love, Sex, and Relationships by Ken Kroll & Erica Levy Klein, which has some great advice about trying new positions. I also recommend the Liberator line of furniture, which can help inflexible Babes get into more positions.) (Wow, I still can't believe I'm writing this.)

And finally, our old friend fatigue. This is not the "I've had a long day at work, honey, so can we just knock one out so I can get to sleep?" kind of tired. This is the "I'm so exhausted I can't hold my hairbrush long enough to finish blow-drying my hair, let alone lie here long enough for you to finish, let alone for me to have an orgasm. Let's just go to sleep after this episode of The Office is over, OK?" kind of tired. The fatigue of fibro can be crushing, I know.

(I'm not going to leave you without advice on this point, either. First, see my recommendation above about the Liberator; it can really help you relax into positions that would be tiring to hold under your own strength. And to that point, I'd like to remind fellow fibro folks that sex doesn't have to be like in the movies, all rambunctious and wild; you can have really chill, sensual experiences that are a huge turn-on and don't drain your energy. The Good Vibrations Guide to Sex has some great advice on this topic!)

Pharma issues: Medicines and their side effects

Before I jump into talking about bad side effects, let me first say that pharma has literally saved my life, a couple of times. And a cocktail of meds keeps me functioning at a pretty high level most days, so I'm pretty thankful that I have that as an option.

Now. That being said, a lot of the meds those of us in the fibromyalgia community take have side effects that keep us from having orgasms, or at least change the nature of our orgasms. One medication that's frequently prescribed, in particular, has been talked about a lot on some of the fibro communities I frequent as an "orgasm killer" of sorts (I'm not going to name it here because it would look like I'm bashing it, but a quick search will tell you what it is, friends).

Have I experienced this? Yup. Have I talked with my docs about it? You betcha. We've gone back and forth, worked on balancing the pros and cons of going on and off certain meds, trying to get the dosages just right. And... that's about as much detail as I feel like giving you.

The important thing for you to know is this: You should really talk to your health care provider(s) about each of your medications and their possible side effects when it comes to your sexual health. I know it can feel embarassing, but your sex life is part of your WHOLE life, and your doctors should consider it a priority. Do your homework, ask questions, be savvy, speak up.

Body image issues: Weight gain, weight loss, life-altering events

I don't know about y'all, but I've gained some weight since fibromyalgia became part of my life. And for a long time, I felt really unattractive because of it, no matter what anyone said. It seems pretty common for fibro folks to gain weight because we become less active, and a lot of the meds we take (see above) can also cause us to gain weight.

On the other hand, some of us lose weight, maybe from the stress of developing a chronic condition, or a comorbidity (that's another chronic condition that shows up along with fibro, for you newcomers). Or perhaps your fibro showed up in connection with some other life-altering event, like an accident or another trauma, and you've got other body issues that come from that—many of us have a full plate of body issues to deal with.

So THAT all adds up to a BIG 'OL PLATE O' SEXY. I totally know how this goes. Nothing kills the old sex drive like feeling completely unattractive.

What to do? To be honest, I've done some hard work on this issue, through cognitive behavioral therapy (CBT) and talking with the important people in my life about my feelings. I may sometimes feel really unattractive, but the truth is, I'm a fabulously sexy ChronicBabe, no matter what my weight is. Occasionally I need a nudge, and I'll reach out to a friend for reassurance, and that's cool. If this is an issue for you, I encourage you to seek out some counseling, because it can make a world of difference.

I've also gotten a kick out of checking out pin-up art for inspiration, because damn, those curvy ladies are awesome. My pal Brenda's old blog is great for that. I miss the era where some curve was idealized.

But let's get real for a second about weight stuff. This may be an unpopular thing to say, but if there's anything you CAN do about your weight, then I believe you should do it—we can't just blame it all on the fibro. I know that some of my weight gain has totally been in my control, so I'm trying to lose weight through dietary changes and exercise, and it's working. And you know what? Every time I lose a pound, I feel awesomely proud, and that boosts my confidence—and my self-esteem. And then I feel sexier! Awesome.

Emotional issues: Depression, anxiety and plain-old frustration

Last but not least, many of us fibroBabes deal with the additional mental health issues of depression and/or anxiety and/or just plain-old frustration, anger, resentment...the list goes on and on. Some of those mental health issues bring with them their own physical symptoms, too, which can decrease libido and the ability to achieve orgasm. Depression, especially!

And if you have fibromyalgia and depression, it can become a vicious cycle that's hard to get out of. You're depressed because you're sick, so you take meds that potentially make it impossible to achieve orgasm. Then you're frustrated and sad because you can't orgasm, so you don't have sex as often, then you're more disconnected from your partner, you feel less attractive, you're getting fewer endorphins that help with your pain, you're less physically active (hey, that sex life was part of your cardio!), now you're even more bummed out... Can you see where I'm going with this?

This is another time when I say: Get thee to a counselor of some sort. Again, I am not a doctor, but I can speak from my own experience. I'm not going to shy away from saying that therapy has helped me a lot, and I think it can be part of a great pain/fibro management plan. If you can't afford a therapist, many free or sliding-scale clinics can help you find a clinical social worker who can provide counseling that's extremely beneficial, so don't feel like all is lost if your insurance won't cover a psychologist!

A few last resources

Before I sign off, I wanted to share a few last resources:

WebMD's article on fibromyalgia and sex, which is actually not bad, considering how bland their content often is.

A kick-ass article on Disaboom about fibromyalgia and sex (ah, the author recommends cuddling just like I do. She rocks!)

Amy K's lovely article (with lots more resources) on opening her mind to life with fibromyalgia and a sex life at WEGO Health.

I haven't read this yet, but maybe we should start a book club to read: The Ultimate Guide to Sex and Disability. Let's all buy it from Women & Children First, which is based here in Chicago, but will ship it to you; support local bookstores please!

OK, this has been an extremely challenging post to write—and to be honest, I'm really nervous to post it! But I feel like it's necessary to be open about important issues, and this has been on my mind for a while. So I hope it's been useful. (i.e. I hope it's been worth it for me to talk about orgasms.) Let me know what you think, and please share any resources you have in the comments section!

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*All month you'll see me reference #HAWMC as a hashtag in my headlines; that's so when I write about it, my references show up properly in Twitter and folks can find my Tweets. That's technology, folks!

Posted: 4/10/2011 in Chronically Sexy

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