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

[Cort]

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.

[fright]

[/fright]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.

 

[Cort]

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.

[fright]View attachment 785 [/fright]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.

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.

 

[Angie]

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.

 

[Mwasi]

Hello,

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

 

[KweenPita]

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".

 

[KweenPita]

Doesn't happen every time, but often enough to be a B!#Ch!

 

[h3ro]

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.

 

[Cecelia]

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.

 

[Cecelia]

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.

 

[Lee Lee]

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.

 

[Cort]

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.

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!

 

[Cort]

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".

Oh no!

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

 

[Cort]

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

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.

 

[Cort]

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.

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.

 

[Cort]

Doesn't happen every time, but often enough to be a B!#Ch!

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

 

[Cort]

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.

It's worrisome - that's how it is...

 

[Nita]

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).

 

[Folk]

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)

 

[Cort]

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).

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.

 

[GusLee]

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.