ME/CFS, Fibromyalgia & Strategies For Improving Intimacy

I have written before on Fighting Fatigue and I have also read elsewhere that the divorce rate involving a chronically ill partner is 75%.  That is extremely high and my first marriage failed in part due the lack of support I received from my ex-husband.  He didn’t believe I was really ill and that lack of support and trust was a huge factor in me falling out of love with him. 

I just read some great advice last night on strategies for improving intimacy when ME/CFS & Fibromyalgia is involved by Bruce Campbell, PhD.  Dr. Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online Self Help courses in moderated discussion group format, and free follow-up programs & support.

Thanks to ProHealth, part of Dr. Campbell’s series on “Recasting Relationships & Building Support” has been posted and this section includes the six strageties for improving intimacy. This is what Dr. Campbell found in his series from patients:

When CFS or fibromyalgia enters a marriage, one casualty can be intimacy between the partners. Pain, reduced energy, reduced interest, health problems of the partner, and increased responsibilities for the healthy spouse can all affect a couple’s sex life.

But, like other aspects of long-term illness, intimacy problems can be reduced as well.

When we asked people in our Self Help program to describe the effects of their illness on their sexuality:

• All those who responded said that illness had reduced their sexual activity.

• Many people mentioned having a much lower level of sexual desire than before, due to factors like ongoing fatigue and pain, and the side effects of medications.

• Other causes of sexual problems included the effects of menopause, relationship strains, and the medical problems and/or impotence of their partner.

Even though people said that they had either reduced their sexual expression or given up sex, most also reported using a variety of strategies that have either enabled them to adapt their sexual life to their illness or to connect with their partner in other ways.

One thing I would like to add that I know may cause intimacy problems is certain medications, particularly antidepressants in women.  Many of us take antidepressants for CFS and/or Fibromyalgia and certain antidepressants can cause a woman to not orgasm which can lead to sexual frustration and tension in the bedroom. 

Here are Dr. Campbell’s six strategies he recommends for improving intimacy.

Talking.  Dr. Campbell reports that several people stated their relationship improved with their spouse after they talked openly about their reduced interest in sex.  Couples started talking about the reasons why their sex drive has diminished or disappeared and let the other know it was not them personally.  Also, talking about what sexual positions caused pain and discomfort helped the couples also.

Alternative Activities, In Bed and Out.  Patients reported using other means of showing affection besides intercourse – cuddling, and satifsying their partner in other ways.  Hugging, kissing, holding hands, manual stimulation, and oral sex are all alternatives to regular intercourse if the sick partner is not up to it.  Finding other ways to satisfy each other can be a new adventure.

Planning for Sex.  Planning for sex allows the sick spouse to rest up for it.  We have to prepare and plan for everything else so why should sex be any different?  Sometimes we may just need to forget about the laundry for the day, not run the sweeper, and save that energy for our spouse.  By planning a date, it allows us to also know what we need to do that week to reduce work levels and other activities.   Taking advantage of what your best time of day is may be the time you want to plan your “sex date” with your spouse.  If you feel better in the morning, plan for then.  If you feel better in the afternoon, plan a time for then.

Flexibility and Experimentation.  Dr. Campbells says, “Given the often unpredictable course of CFS and FM, it helps to be flexible about when sex occurs and what positions and activities are involved.”  Try the different times as discussed above and different positions to see what works best.  One couple said that having sex in the shower made her feel better because of the heat.

Addressing Pain and Hormone Problems.  “Several people reported that their sex lives improved after treatment of pain and hormone problems. People reported treating pain by the use of pain pills, topical ointments, massage, and heat and by adapting how intimacy occurs.”  Using medication safely and as directed is most important, but he recommends:

• take pain medication when it will be at its peak effectiveness when you plan to have sex.
• you may want to avoid narcotics or tranquilizers so that your senses aren’t dulled.
• reduce pain by taking a bath before sex, getting a massage, and stretching.
• reduce pain by choosing positions that are comfortable and often changing positions. 
• use the pain control approach of distraction and meditation.

Emphasis on Caring. Dr. Campbell reported that: “A number of people distinguished between intimacy and sex, and said they and their partners focused on closeness and mutual caring.”  Sex is important in a marriage but couples can also focus on other areas of their relationship to remain close, caring and loving.

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