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

[Who Me?]

I can't read all this so may have missed it but has anyone mentioned solo sex? It's a great stress reliever and no PEM.

Edited: I'm talking about orgasm only. Not intimacy. Two different things.

 

[GusLee]

i rely on solo when I feel my self getting really pent up & exercise can't relieve the stress- but it is only a weak substitute for being held & loved by the one you love. miss that kind of intimacy with my husband.

 

[Who Me?]

I edited my post. I was not referring to intimacy, only the orgasm.

I don't think that was part of @Cort original question. At least how I interpreted it.

It seems being in a relationship could alter someone's Thinking and how they answer.

 

[Cort]

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.

I had similar problems with an ex-girlfriend - she felt guilty (lol) because I wasn't all there - even though she was enjoying herself. She wanted me to have equal enjoyment and it bothered her that I couldn't. It was a major problem.

 

[Cort]

I can't read all this so may have missed it but has anyone mentioned solo sex? It's a great stress reliever and no PEM.

Edited: I'm talking about orgasm only. Not intimacy. Two different things.

It definitely helps....

 

[Cecelia]

The whole thing about PEM is that it happens with anything involving exertion regardless of whether it is pleasurable or negatively stressful. I think some of the breakdown between those who have PEM and those who don't is whether a person has ME/CFS or FM.

 

[KweenPita]

I am very happily married for 36 years to a wonderful supportive spouse, my first, my soul mate and in my 57 year old mind I very much want sex. Until 8 years ago, we were bunny rabbits. Thank goodness, he has sore knees and back now, too. That was awful of me. But having a life partner makes things easier to "pillow up" and be gentler. But it's no longer spontaneous. There's a recovery time. My grown children will tease me if I am "laid up". The CBD oil has helped with nerve pain etc, but it's increased my frustrated mental libido. But I do what I do out of love, because I have a partner and best friend who would move heaven and earth for me. And while I am laid up, I am pampered, fed, and cared for. I am one of the very, very, very, blessed few who has this luxury. But if tomorrow I said no more, he would be okay. It's me who can't let our physical love die to this nightmare.

 

[KweenPita]

I edited my post. I was not referring to intimacy, only the orgasm.

I don't think that was part of @Cort original question. At least how I interpreted it.

It seems being in a relationship could alter someone's Thinking and how they answer.

And you're right Remi, there are lots of ways to have orgasms without getting "Randy" even us doubles can do that ! ROFLMAO And it's very fun exploring all wonderful ways and those nifty gadgets. My grown daughter and I visit this little shop together. I love asking the clerk to details of the goods for us, just to totally embarrass her. It's fun entertainment.

 

[Cort]

I am very happily married for 36 years to a wonderful supportive spouse, my first, my soul mate and in my 57 year old mind I very much want sex. Until 8 years ago, we were bunny rabbits. Thank goodness, he has sore knees and back now, too. That was awful of me. But having a life partner makes things easier to "pillow up" and be gentler. But it's no longer spontaneous. There's a recovery time. My grown children will tease me if I am "laid up". The CBD oil has helped with nerve pain etc, but it's increased my frustrated mental libido. But I do what I do out of love, because I have a partner and best friend who would move heaven and earth for me. And while I am laid up, I am pampered, fed, and cared for. I am one of the very, very, very, blessed few who has this luxury. But if tomorrow I said no more, he would be okay. It's me who can't let our physical love die to this nightmare.

That was beautifully said KweenPita. I salute the relationship you have created with your husband and hope that your bunny hopping days are not over.

 

[Jane T]

KweenPita, I have read of this exact issue and it was that this is a major sign of a brain aneurysm that needs repair before it ruptures. Splitting headache right at peak of orgasm when blood vessel dilation changes. I know that so many symptoms of ME/CFS, and FM can mimic other serious diseases, but this is serious enough to not take lightly and tell your doc about. Best wishes!

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".

 

[Sonia N]

Yea kind of miss it!!! Glad Sex was great to prior to this illness.

 

[Cinders]

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.

The PEM makes me plan our sex life. If I am going out that day and hubby feels a bit frisky in the morning it s a No No as I cant do both!!!

 

[Cinders]

I'm so glad you're discussing this. Its at the back of all our minds and yet is never openly discussed.I sit with my friends from the M.E group and we say M.E affects EVERY aspect of our lives and we all know what we mean, but its never said openly!!

I also have Fibromyalgia and so pain aswell as exhaustion makes things difficult. I have to a) have the energy to start with, b) not have too much pain. Then there is the PEM. I have to plan. If hubby wakes up feeling frisky and I have plans that day then there is no way I can do both! I sometimes 'Lie back for England and let him get on with it!!!! Hubs is wonderfully understanding. SNRI's have affected the big O but he is very patient with me. Even though M.E/Fibro have affected our sex life it hasnt destroyed it. Since I have been on Morphine I have had a wonderful side effect and that is multiples!!! never happened before.!!!

 

[Lissa]

I had similar problems with an ex-girlfriend - she felt guilty (lol) because I wasn't all there - even though she was enjoying herself. She wanted me to have equal enjoyment and it bothered her that I couldn't. It was a major problem.

Yes, I worry that my husband feels that way! He's concerned for me when things don't end up "equal", because it seems so unfair. Which tends to happen often -- due to PEM causing a sudden premature shut-down of all the feel-good wiring.

It's like someone turned the lights out and everything gets overstimulated and numb in one fell swoop. (I'm guessing it's a metabolic set-point that prevents damage based on heart rate and heavy breathing!). Game over for me, with no warning on the expiration date. It has no bearing whatsoever on desire or skills!! It's just this damnable disease!

On the flip side, I feel really badly for my husband, because of how rare it is for us to even attempt a good romp. We were newlyweds of just a year when I got sick. (Yes, we had it good-- like very healthy bunnies, once upon a time.) Not only is my sex drive completely absent for months on end now, there's also no such thing as spontaneity... Must rest and save up energy in advance. The planning itself totally kills that mystery factor that can make sex more exciting.

And then you have to plan for doing nothing for days afterward because the cost is so great. Needless to say, the resulting PEM sucks royally. I wind up feeling like I got run over by a fully loaded dump truck. Flattened for days, popping anti-inflammatories to regain some functionality.

Somehow it is still worth it though, even if it is few and far between. The payoff is the renewed bonding, sharing, and intimacy. It's important to not give up on that --- despite all else that ME/CFS robs us of!

 

[Telula]

I got sick so young so I've never had the chance to have sex. And I seem to have no drive for it either, or very little, and because I got sick so young I can't tell if I'm asexual or if it's just the horrible pain and fatigue and other symptoms that cut any drive off at its knees.
And anytime I try it's very painful and exhausting and PEM causing. Yuck.
So not only on top of trying to find someone to love who will accept my illness and all that comes with I have to find someone who doesn't want sex too? Ugh.

 

[Cort]

I

I got sick so young so I've never had the chance to have sex. And I seem to have no drive for it either, or very little, and because I got sick so young I can't tell if I'm asexual or if it's just the horrible pain and fatigue and other symptoms that cut any drive off at its knees.
And anytime I try it's very painful and exhausting and PEM causing. Yuck.
So not only on top of trying to find someone to love who will accept my illness and all that comes with I have to find someone who doesn't want sex too? Ugh.

When it rains it pours!

 

[Cort]

I'm so glad you're discussing this. Its at the back of all our minds and yet is never openly discussed.I sit with my friends from the M.E group and we say M.E affects EVERY aspect of our lives and we all know what we mean, but its never said openly!!

I also have Fibromyalgia and so pain aswell as exhaustion makes things difficult. I have to a) have the energy to start with, b) not have too much pain. Then there is the PEM. I have to plan. If hubby wakes up feeling frisky and I have plans that day then there is no way I can do both! I sometimes 'Lie back for England and let him get on with it!!!! Hubs is wonderfully understanding. SNRI's have affected the big O but he is very patient with me. Even though M.E/Fibro have affected our sex life it hasnt destroyed it. Since I have been on Morphine I have had a wonderful side effect and that is multiples!!! never happened before.!!!

Lie back for England! I love it . That made me laugh. PEM is really big for a lot of people - it isn't for me thankfully - not that I'm having sex much at all - but it shows again that it happens even in happy and endorphin rich activities - that's a clue to something...

 

[Katie]

I'm so happy you posted this very important blog.
In all my years only one doctor, who wasn't my regular doctor, ever asked me how (at that time just diagnosed with FM) FM had affected my sex life. Not even my family doctor asked.
I recently met with a RN doing some research on chronic pain for a display at the local university.
We spoke for over an hour, covering almost everything I knew about chronic pain and explained what ME/CFS is all about. She asked a lot of good questions. At the end of the app't she asked if there was anything we missed. Being exhausted by then, I blurted out "nobody ever asks about sex". Silence. Oh oh, did I say the wrong thing? Then I had to explain why I thought this subject was important. Yes, - we age, sexual functioning can change. Add on chronic pain and PEM and it's challenging. I'm also a nurse, I was surprised that this seemed a taboo subject. Some partners may feel that lack of or changes in sexual relationships are insurmountable and leave. Other relationships may grow stronger in other areas, like patience, tolerance, friendship, acceptance and a deeper commitment.
I look forward and at the same time dread sex. Thank goodness I have a very patient and kind husband.
When I have an orgasm, I'm sure each time that I'm going to have a heart attack and die (drop in BP and tachycardia). I really get scared at times. Some may say "not a bad way to go". I disagree. I usually wonder if it's worth it. At times it seems the only way to do something loving for my husband. I don't have sex out of guilt, I also enjoy it but the aftermath feels like I've been bowled over by a rugby team. Then my back goes out. Hmmmm

 

[Lana]

Hello
I have pelvic pain and have fibromyalgia, Addison Disease, Sjogrens with elevated EBV reactivated, chronic pain especially in buttocks and sacral nerves. Sometimes get radiofrequency where pain management will burn the sacral nerves S1, S2, S3 temporarily to relieve some pain for approx. 10 months up to 3 years. The nerves do however, regenerate, so procedure needs to be done off and on. Don't these viruses have anything better to do than just sit on our dorsal root ganglia, or sacral ganglia. ugh! I tried Valtrex 500mg 2 -3 times a day and notice a relieve in my chronic pelvic pain.!! yeah. Although, this may work and even though Pridgen and Duffy found good information concerning these viruses especially HSV1, taking these long term is not so great either because they come with side effects too. Has anyone tried the Valtrex with monolaurin. thanks

Lana

 

[Steve]

Pain whenever you move certainly has reduced my formerly significant sexual interest. Chronic pain also causes fatigue and lowers motivation and ability for everything IMO. Add an opiate and you are seriously f**cked up but not f**cking.