Sex can be an important part of a relationship, but all too often people with disabilities such as fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) believe they have to severely limit their sexual activity, or even give it up altogether.
Either pain or fatigue may be enough to make someone fear or avoid sexual activity. When you have the FMS symptom of allodynia (pain from gentle touch) or the ME/CFS symptom of post-exertional malaise (exhaustion from moderate activity), sex can seem impossible.
However, with open communication, experimentation and forethought, you may be able to reclaim your sex life.
Obstacles to Sexual Activity
Pain and fatigue may be serious obstacles, but they're certainly not the only ones we face with FMS and ME/CFS.
It can be difficult to feel sexy when you don't feel good about yourself. Chronic illness can take a big toll on your self-esteem. You may feel flawed, broken and inadequate, as if you no longer have anything to offer. You may also be feeling guilty about the things you can no longer do. Illness can cause weight gain as well, which may compound the problem. Being unable to put a lot of effort into your appearance doesn't help either.
It's often difficult for our significant others to come to turns with our illness and the changes it inflicts upon our lives. Sadly, some of them have trouble believing that we truly are sick and not just "being lazy" or "trying to get attention." This is a factor that can work in a couple of different ways - a drop in sexual activity may strain the relationship, or strain on a relationship can cause a drop in sexual activity.
Get help Explaining Your Illness to Your Loved Ones
The neurotransmitter dysregulation of FMS and ME/CFS may sap your motivation and interest in a multitude of things, including sex.
Depression is common in chronic illness, and even more so for these conditions. It can lower your sex drive, as can many of the medications for it.
Antidepressants such as SSRIs and SNRIs can cause sexual dysfunction. These drugs are frequently prescribed for FMS and ME/CFS, even if depression isn't present because they work on neurotransmitters that are believed to be dysregulated in these illnesses.
Sexual dysfunction may also result from FMS or ME/CFS, according to research. However, we don't yet know much about it other than that it exists, so further research is needed into why.
Learn more about Antidepressants & Sexual Dysfunction.
Other illnesses including vulvodynia (pain in the vulva) or interstitial cystitis (pain in the bladder) can make sexual intercourse extremely painful, on top of the pain you already have.
You may be afraid of sex exacerbating your symptoms, which could make you unable to relax and enjoy the experience. And you may not be the only one held back by fear -- your partner may also be concerned about hurting you or triggering symptoms.
Overcoming the Obstacles
Solutions to these problems starts with communication - you need to communicate with both your partner and your doctor.
Open communication with your partner may be difficult if you're not accustomed to talking about sex. However, it's important for him/her to know where you have pain, the limits of your endurance, and what activity you're comfortable with.
If you're having other relationship problems, you'll need to work on those as well. A couples counselor may be able to help.
You may also want to see a counselor for problems with self-esteem and depression.
Your doctor can help you diagnose and treat any overlapping conditions, such as vulvodynia or interstitial cystitis, that may be getting in your way.
Talking about sex can be difficult, whether it's at home or in a clinical setting. Here are some resources to help you with that, from About.com Sexuality Guide Cory Silverberg:
- How to Talk to Your Partner About Sex
- Myths About Sexuality & Disability
- Talking to Your Doctor About Sex
The Right PositionsYou may find that certain sexual activities or positions sap less of your energy and therefore are less likely to trigger a symptom flare. Cory has some great articles on that for you:
He also has information on pain that can help:
If you've found ways to deal with pain during sex, you can share your success story here: Readers Respond: How Do You Cope With Pain During Sex?
Blazquez A, Alegre J, Ruiz E. Journal of sex and marital therapy. 2009 Oct;35(5):347-59. Women with chronic fatigue syndrome and sexual dysfunction: past, present, and future.
Blazquez A, et. al. Journal of sex and marital therapy. 2008;34(3):240-7. Sexual dysfunction as related to severity of fatigue in women with CFS.
Kalichman L. Clinical rheumatology. 2009 Apr;28(4):365-9. Association between fibromyalgia and sexual dysfunction in women.
Rico-Villademoros F, et. al. The journal of sexual medicine. 2011 Oct 24. doi: 10.1111/j.1743-6109.2011.02513.x. Sexual Functioning in Women and Men with Fibromyalgia.