ME/CFS, Fibromyalgia & Strategies For Improving Intimacy

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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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Comments

  1. smilinggreenmom says:

    Wow, what a great article that I will definitely share with my sister in law who suffers from fibro and CFS. It is hard for her in many areas but fortunately my brother is very very understanding and sympathetic. I cannot imagine how hard this would be on a marriage. I recently gave her some of our favorite pain cream from Topricin (which I love bc it is natural and works great) and she said it really helped her!! Yay! Thanks for this wonderful article that I will for sure pass along to her.

  2. James Morton Kelly says:

    My wife found a very viable way for her to deal with my sudden onset of debilitating (20 year duration, so far) CFIDS which made me have to retire early (could not get disability retirement because doctors could not fill in the blank space indicating “Reason for Debilitation”). For myself, I must but suffer pain – no choices for me.
    She simply started a “musical chairs’ approach to having affairs. Some of the guys, she would fall in love with for various amounts of time.
    I came down with CFIDS in 1994 and she continued her “hobby” up until “mother nature” caught up to her in her early 70’s and she realized the boyz were lookin’ around for “younger women” and thus, she was now excluded from the club.
    She now devotes that time to charity work and does it quite well.
    Sure, I had the hard evidence on her activities – she got careless and started leaving her “love emails” around and I happened to find some one day when she asked me to fix her computer and one popped up on the screen she had just written and sent. It was VERY descriptive.
    So, why did I not divorce her? Well, after I found out I simply, analytically decided it was in both our best interests (for the kids/grandchild) for us to present the good “song & dance” routine for our off-spring’s sake and she was my friend anyway. Only little problem was, she was full of unfaithfulness and had, originally gotten very mad for a very long period of time at me for having gotten sick in the first place.
    Being a peaceful, non-yelling, non-violent person, this is the way I have chosen to endure the past 20 years with her (not to mention all that one must suffer with the disease itself). I simply decided to let her be as she desired. No questions asked.
    Now that she can no longer “ply her wares”, she wants me to hold her, reach out to her, tell her I love her put my arms around her and all the rest I used to do for her so well. If I were to do any of that, I would be lying to her and myself. I am what I have always been to her for the past 20 years – her caring friend. I look to her health and well-being as best I can. But, she gave her emotional-affectionate, faithful side away loooong ago. In twenty years, I have NEVER so much as much as put my arm around her out of affection, but, I do pick her up when she falls, take care of her when she is sick. I do for her what I would do for any friend. She wants a “traditional” marriage now – I explained to her a line that Bette Davis used in an old black and white movie in which she was an abusive, controlling master of her daughter. Finally, the daughter, in her late 20s, single, living at home because that was the way Bette wanted it, had had enough and she started yelling in revolt at Bette who crumpled, emotionally to the floor with those big eyes a-bulgin’. When the daughter saw the effect revolt of lifetime control over her had on her mother, she went to the floor and started crying, holding her mother tight, telling Bette (her mother) how sorry and wrong she was for her emotional display and it would never happen again. Bette simply responded, “No- no, you don’t understand. Once you have spoiled something, it can never be the same.” And, so it isn’t.
    I have made funeral arrangements with my lawyer and undertaker for when I die. There is to be no form of service for me, NO GATHERINGS, I will be cremated and buried at sea by the US Navy. In other words, she is not to be involved in any way in my funeral. She will be deprived of having her little, “devoted, loving, care-giving” pity party for the public at large. I have also written all this up and explained it all to my extended family, what I do and why. (What choice did I have on this? If they know not in advance, how could they possibly understand my plans when the time comes?) They understand. I am a certified organ donor and those with CFIDS are not excluded from donating. This, I have researched well and my doctor concurs on this. There is a historical base for this being safe for recipients of CFIDS donors. I DO hope that comes to pass but not really hoping it happens today. Have a nice day!

  3. I was sick, abused, left, and have gone through the legal wringer. I think that only CFS understands CFS. I am normal in every way except I have CFS and MTBI, and am high IQ. I am very hopeful with resources. Without resources, it seems hopeless.

  4. CFS is about being half physically disabled, at least. When not on any medications, I don’t think it affects a person’s sex drive. CFS is not about the person suffering, it’s God’s test for those around them. I would like to know more about whether it is truly noncontagious.

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