Poll Sex, Chronic Fatigue Syndrome and Fibromyalgia: the Sex Poll

Discussion in 'Symptoms' started by Cort, Nov 22, 2015.


Please state what is true for you (all answers are anonymous)

  1. The frequency with which I have sex has been reduced since I became ill

    120 vote(s)
  2. My sexual desire/arousal has been reduced

    99 vote(s)
  3. My ability to achieve orgasm or ejaculation has been reduced

    56 vote(s)
  4. I experience pain during or after sex

    59 vote(s)
  5. I have problems with lubrication during sex

    47 vote(s)
  6. Isolation has reduced my access to sexual partners

    46 vote(s)
  7. Reduced sexual functioning has limited my willingness to date

    27 vote(s)
  8. ME/CFS and/or FM has had a great impact on my sex life

    100 vote(s)
  9. ME/CFS and/or FM has had a moderate impact on my sex life

    27 vote(s)
  10. ME/CFS and/or FM has not had an impact on my sex life

    0 vote(s)
  11. Problems with post-exertional malaise after sex make me reluctant to have sex

    50 vote(s)
Multiple votes are allowed.
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Sex is important. When it's missing from a relationship bad things can happen but sex often doesn't have the same appeal it did when you're pain or fatigued. Pain, morning stiffness, joint problems, sensitivity to touch and fatigue can all potentially interfere with sex in ME/CFS and FM.

    Reduced fitness, drug side effects, self-esteem can play a role as well. Antidepressants, in particular, tricyclic antidepressants, serotonin uptake inhibitors and monoamine oxidase inhibitors can negatively affect sexual functioning.

    Increased rates of pelvic pain in FM and gynecological disorders in ME/CFS and FM add another layer to the discussion.

    A study examining sexual functioning in rheumatic diseases (systemic lupus erythematosus (SLE); rheumatoid arthritis (RA); systemic sclerosis (SSc); antiphospholipid antibody syndrome (APLS); and fibromyalgia (FM)) found the highest rate of sexual dysfunction in FM.

    That study associated depression with reduced sexual function but other studies have found otherwise. Neither depression nor duration of fibromyalgia was correlated with reduced sexual functioning in a recent study; instead, sleep quality was.

    Still, despite the emotional and relationship costs of reduced sexual functioning sex is rarely addressed either in doctor's offices or studies. When it is addressed in studies it's usually addressed in the context of depression or other biopsychosocial factors.

    Please take "The Sex Poll" and let us know if ME/CFS and/or FM has interfered with your sex life.

    Attached Files:

    Zapped likes this.
  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I'm just going to be very honest and say that my lack of libido and reduced sexual performance has had a big impact on me socially. I got ME/CFS when I was young. My sex drive wasn't destroyed - it was still there - but not being up to par sexually - made me hesitant. I didn't go out as much. Fatigue was certainly a big issue - not being able to do a lot of the stuff healthy people take for granted - that was big too, but always lurking behind was always this embarrassing concern....

    Which is almost never discussed for some reason.
    zzz, Johannes, Lissa and 4 others like this.
  3. Angie

    Angie Member

    I'll also be very honest and say that I had an overabundant libido before ME/CFS and I can't say for sure if it is age or illness that dulled it a little. Lack of partner is my biggest issue as this illness is very isolating, but when I did have one, my hesitation was rooted in what the payback would be. Even if just laying there passively with all limbs well supported, sex is very exertional. Unless I was guaranteed an orgasm I didn't want to, the cost wasn't worth the reward and orgasm has it's own pain relieving aspect that helped to offset the payback. I couldn't imagine what it's like being a man with this illness trying to have a fulfilling sex life with how finicky man parts are on the best of days with the healthiest of bodies.
    Sue Stevenson, Lissa, Sonia N and 4 others like this.
  4. Mwasi

    Mwasi Member


    This is really strange but few minutes ago, I was talking with a friend and we talk about sex and ME.

    Sex? What's that?
    Seriously, the last relationship I had (2 y ago), sex was difficult because of pelvic pain during intercourse and flare up of pain few hours/days later. Anyway the relationship didn't last very long (few months) but the major thing was not sex, no. It was more incomprehension from my partner about ME and deep fatigue. I know the reason the relationship ended was more about ME than anything else.

    For now, I am not interested to have a lover to be honest.
    And to be more honest, I do not even think about masturbation to "help" me. No. Don't feel any energy for it. For now, sexual life is above my strength.

    Good subject Cort!
    Let's face all those taboo subjects :)
    Justarose123, Sonia N, Judi and 2 others like this.
  5. KweenPita

    KweenPita Active Member

    One problem I have experienced as a female since my fibromyalgia has progressed is I experience an intense spontaneous head splitting migraine that lasts for a couple days, causes stroke-like symptoms and partial temporary memory loss just at the point of the big "O".
    Justarose123 and Sonia N like this.
  6. KweenPita

    KweenPita Active Member

    Doesn't happen every time, but often enough to be a B!#Ch!
    Sonia N likes this.
  7. h3ro

    h3ro Active Member

    Has been nearly 7 years for me. Any kind of sexual activity tends to cause quite major PEM. I'm also too chemical sensitive for much physical contact.
    Sonia N and Cecelia like this.
  8. Cecelia

    Cecelia Active Member

    PEM derailed sex for me. The payback was days of severe fatigue, worse if the sex was good but still too high a price to pay in terms of flu symptoms even with the gentlest form of sex. Sex going to orgasm is highly intense is the problem. So I broke up with my boyfriend as it wasn't fair to him, and became virtually celibate. That was years ago and now i have other old age and disability problems which would get in the way or stop it anyway. If I didn't have ME/CFS, I would have had years more of good sex, but I am grateful that I had had a fulfilling sex life once.
    Lissa, Scribe52 and Sonia N like this.
  9. Cecelia

    Cecelia Active Member

    Cort, I think it would be helpful to add another question to your survey about PEM after sexual activitiy, and if that has been severe enough for people to make sex not worth the cost.
    Sonia N and BusyTVI like this.
  10. Lee Lee

    Lee Lee New Member

    I think you have overlooked one glaringly obvious question ... does PEM stop you having sex? I wouldnt dare attemp to have sex because I know it would take weeks to recover from that level of activity and adrenalin etc.
    Cecelia likes this.
  11. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I've heard that happens to some people. The only thing that happens to me is that when I'm really depleted and I ejaculate it hurts...it's really weird!
  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Oh no!

    I read that some people find that sex helps their migraines - too bad that when it can start one.
  13. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I just figured out how to do that. You can go back in add your answer if you want :)
  14. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    PEM is big for many people..I just added a question about PEM on the poll - you can go back and ad your response to it if you wish.
  15. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    For sure....If it only happens once - a response like that will get you thinking that's for sure.
  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It's worrisome - that's how it is...:)
  17. Nita

    Nita Member

    Sex uses more spoons than I have available. After sex I am in severe PEM within just a few hours. Just the climax itself can trigger PEM without the physical exertion. Hate this dammed disease (ME/CFS).
    Lissa and Sonia N like this.
  18. Folk

    Folk Well-Known Member

    When I had just FM, It had no impact on my sex life (the only symptom was pain on the following days from the exercise)
    When I took anti depressants for pain it affected a LOT my sex life. Some caused hard time getting and erection and all of them caused me to need three years to reach an orgasm.

    After ME/CFS I had a lot more problems. I feel like I'm having that same side effects of the anti depressants but much milder.
    I normally take half Ciallis.
    During sex and after it I feel pretty great. My pain decreases a lot.

    I still feel pain on the other day from the exercise... (it has gotten better with practice)
  19. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It's just amazing because sex obviously pumps up the feel good endorphins like nothing else....This is the opposite of stress! It suggests to me that ME/CFS is more about depletion than an ability to respond to stress - unless you count any physical activity - even physical activity like sex - as stress.
    Lissa and Sonia N like this.
  20. GusLee

    GusLee Member

    as a caregiver- this illness makes having sex impossible. One- the medications make my husband have no libido, no real thought of having sex or interest. We are living like companions- some hugging & short lip smacks (very rare real kissing) & minimal back rubs but that's it. Between the medications & illness effects there is no room for a sex life. For me- I have to give it up also- a little anger here at the illness not at my husband - for how much it has altered our life.
    zzz, KweenPita, MoonFlower55 and 3 others like this.