I'm 66 so sex or the absence thereof is of less importance to me than to you so there isn't much I can add, but it said "Sex--0 replies" and that just wasn't right--somebody had to reply to sex.

Here's my only thought: Stop having sex with guys you don't care about. (You note that you have only started to care about this guy.) If the mutual caring comes before the mutual sex, then you will get involved with the kind of guy who cares so much about you that he will accommodate your sexual limitations. Good love gets you through bad sex.

I empathize with you and have had similiar experiences in the past. It is really hard to find relationships where people will understand this illness. Also the stats are not good for women with disabilities and males sticking it out. I don't want to discourage you! (I have been proven wrong sometimes)
Are there issues that are important to him that you are flexible with? You may want to discuss with him the mutual give and take. What about intimate experience that is not so tiring? If you can express how you feel and there is mutual understanding, it is amazing what people can do when they think outside the box.
Try not to beat yourself up, we are thinking about you.

Hi luna,

I'm 52, just celebrated my 33rd wedding anniversary, and in no way do I want sex to be a thing of the past. Even being in a long term committed relationship, sex is like everything else, it's different now. It has to be worked into our activities just like laundry and shopping and personal care. And that just sucks. And it sucks that we have to weigh the pros and cons everytime we want to have sex just like we do when we want to go to a family gathering or any other activity that will use up more energy than we have.

Communication is key, talk to your guy, tell him how you feel and what you want for your relationship, and what the realities are of your situation. Explain the difference between what you want and what you're capable of. My husband and I are still struggling with this. Sometime it makes him feel better just talking about it, him hearing that I miss our old sex life and wanting to be able to do more than I can, that I haven't forgotten that it's important too, that's enough to make it easier for him to live with this and not see it as a personal rejection.

Let your guy be the one to decide if this is a situation he can accept or not. Don't assume or decide for him what he should or shouldn't have to put up with. Everyone has different needs and for lack of a better word, requirements of what they want or need in a relationship. Finding out what his are will be helpful in determining if you two can find a comfortable middle ground. And yes, it has to much harder when trying to establish a new relationship. I cannot even imagine.

I have no problem talking about sex, and if you'd like to discuss in more detail I would be happy to do so.

I wish you all the best,
Genie

I'm 54 but only 10 yrs into my marriage so I certainly want to keep hubby happy if possible. You might try experimenting with positions that are easier on your body.
Also, if you loosen up a bit, a shower or a bath before hand and then afterward it can help. You can work this in as a playful thing.
Gee, so much more I could say but....

I have tried three times to respond to this post. DS just won't let me. It just sends it off to cyberspace. I'll try adding this and see if DS saves it. If it does....I'll continue on with what I have to say!

Ok, I'll try again!

I was struck with CFS five years into my marriage. It didn't take my husband too long to figure out that if couldn't walk to the kitchen, I'd probably have to curtail all the other activities in my life as well.

The key to everything was communication. It surely saved us!! Because he loves me, he was more than willing to work with me on good days vs. bad days. Feeling like I was going to drop over dead, or being able to go shopping at Target for an hour.

I'm sure, that if you chose wisely, and are honest with the person you want to be intimate with......they will listen, and learn, and care to work with you on what you are able to do. They will not make you feel sad or guilty. They will hold your feelings in high regard and understand your efforts to pace your precious energy.

I know this must be incredibly difficult for you to face this illness at such a young age with your whole life ahead of you. But, believe me....there are good people out there to date. People that will understand you and stand beside you. Wait for those special people. You are worth it, Luna!

I've had MAJOR problems with this issue. I get sick for three days too.

My partners assumed I'd lost interest in them, so they left.

The mechanism, in case you're interested, is the release of adrenalin. Any sexual activity, even masturbation, releases a lot of adrenalin. There's no getting around that, it's part of the biology of sexuality. As you may know, adrenalin is like a poison to people with ME/CFS. I suspect it does the same thing to people who have lupus, they can't deal with anything stressful either.

Sometimes it seems like these illnesses were designed to make us miserable.

High five for having the guts to bring this up.

Whatever you do, make sure you aren't pushing yourself to have sex in order to keep the relationship. He can stay or go and you will feel bad about that at some point.

I have to add my agreement about communication. Richie has a good point. Give lots of reassurance. Point out that you are not holding back due to lack of interest.

I have to also agree about trying different positions. That might ease the muscle pain. It also may make a difference in fatigue. Perhaps certain positions work better, but also not doing the same one too many times in a row may make a difference. Just an idea.

Your muscles may be sore from not being used to this. Maybe before he comes over, or when he is in the bathroom, you can do some light stretching and see if that makes a difference.

Doing something very relaxing before/after may be a help. Sleep of course is a popular option. But also a massage could be nice. You could sweetly tell him you don't know if it would make a difference but you would love it if he tried.

Having more or less foreplay is worth trying. Maybe if there is lots of foreplay and less time having sex the fatigue won't be as bad. But on the other hand, maybe foreplay is wearing you out. Perhaps if you limit that it will make a difference. It ought to be fun trying anyway.

I think it would be very helpful if you brought this up with your guy again. I think you should go right out and tell him you don't want to lose him, don't want to be completely wiped out, and don't want to stop having sex. (Provided all that is true.) Then I think you should ask him to help you problem solve. Maybe he will have some ideas none of us thought of. Afterall, he doesn't have brainfog, right? Maybe he'll feel special that you sacrifice so much just to have sex with him. Maybe he'll be glad you are so honest. Maybe he'll be touched that you trust him enough to share this stuff with him.

Don't forget it isn't all about the sex. He should want to be with you for other reasons too. Loving you should outweigh the sex. If it doesn't, he isn't such a great guy. Even if you are completely healthy, sex should not be more important than being loved.

I'm not saying that it is like that between the 2 of you. More like I'm trying to cover all the bases since I don't know all about it. I also thought you might like to hear that you are more than someone to have sex with. We can't hear enough of that, right?