OK, I need some honest and serious answers/comments. Since I am fairly new to RSD, what kind of effect has it had on your sex life? I know some of you have had RSD for years, and some of you are fully involved, so I hope you can relate some info to me. I know others want to hear your comments, but may be too shy to ask! My love-making has been a VERY great part of my marriage over the years...I surely hope THAT won't be taken away from me, too?!
Thanks!

Ok, I'll be brave and be the first to answer!

My rsd started when I was 23, I got married when I was 19. Obviously at that age I didn't want my rsd to get in the way of that part of our marriage either. We've had our ups and downs, but I always try to make sure we don't go too long between times. I think you both have to accept that it won't be the same as before, for example if you can't bear your weight on your arms anymore, so you have to find different ways to do it, and it may end up being that it can only happen one way and thats it.

Sometimes its really hard to get past the pain and be able to be together, so I think you have to just pounce while the pain levels are low. Its hard if doing it makes your pain worse, but if you can find a way its always a good thing for your relationship. Of course your partner has to understand that you don't have any control over when your pain flares up, and for a lot of people it is in the evenings. And that although your head might want to, your pain is stopping you. So understanding and patience on their part is important- to see that its not your fault you have to say no that time.

RSD has now been a part of our marriage (and I really see it that way, as a lot of decisions have to be run by that first to see if it agrees!) for almost 7 years now, but I have to say that my husband and I are very close, and love each other more now than ever before. Sometimes it would be much easier for me to not bother at all, but I think then the relationship would suffer, so its important to me that I do make the effort when the pain levels are low enough to accomodate it.

At most we'll go a week or two without it, but thats very rare. Most of the time its still 2 times a week, albeit compromised by time, (I get too sore during it so no kama-sutra sessions for us! lol), positions and pain levels (plus the four young kids that don't like to go to bed early!! However as he's home as my carer we don't always have to wait until the evenings, which makes it easier.

I hope that helps, without being too much information!

x Kate

Hey...

Uh oh - my squeaky clean image is about to be sullied!

I was engaged to an ex boyfriend of mine and ended up living with him. Kate I TOTALLY agree with everything you say. Just thought I'd add - my OT gave my leaflets on "cripple" sex that were interesting. I had never slept with someone before I developed RSD (at 16) so I guess I can't compare. This is what I've found.

1) Be honest - if it hurts too much... if specific parts are really painful, what they can do touch/ pressure wise etc the TELL!! There are (alot of) days when the pain is so bad I couldn't handle sex - but I learnt that there were other ways of showing affection (NO! you all have dirty minds. NOT that). As Kate says also work with positions and times of day.

2) Position - experiment till you find something that works. Then see if you can improve it through the strategic use of pillows - especially to help tilt the pelvis if you can't do that independently.

3) I take muscle relaxants and pain killers before - because it makes it easier. Know if it will make your pain worse and either compensate and take pain killers before or have them ready for after.

However - since I split up with J I haven't slept with anyone else - and I don't think I'd be able to manage it anymore - or at least not without a 3some (JOKE! It would just take far more imagination)


(I know alot of younger people with RSD and they say that they find sex similar to how they did before they got it - just now they use a couple of pillows and are less likely to be trying out the karma sutra than perhaps their peers are).

Some doctors such as Hooshmand (www.rsdrx.com) believe that sex is good for RSD because of hormone release. etc

Hope this hasn't been too "graphic" (lol - its draft 4).

Good Luck!!

Froggsy xxxxxxxxxxxx

Last romp in the hay for me was August 27th, 2004. YUPPERS!!! If I had known at the time it would be the last time for a while I would have made it a little more memorable. Oh well! What were we talking about????

Just goes to show you that RSD pain can effect men and women and in many many ways. My biggest issues are the pain meds. Combine that with pain in general and I have lost all interest.

I can lead my horse to water - !!!!!!!!!!!!!!!

Chin Up Everyone!!!! Love Mark xoxoxo

I suggest that those who must seek alternatives to the missionary position may want to avoid meds that dry the mouth for a few hours before the festivities.

Its embarrasing to have to stop and sip on something every 3 to 5 seconds...Vic

Thanks for the experienced answers to this question. Kate and Froggsy, I hope your love life will continue to be a beautiful portion of your relationships. Mark, I wish you luck...keep the faith...you may again be able to indulge! There is Always..HOPE!
I am fortunate that my hubby is patient and understanding. We can get quite creative when we have to! I think I like Dr. H's say on RSD and SEX....Maybe we should all do it more, if it may help us????? Sounds like a plan! It's certainly worth trying!!

I agree with this statement at least until the endorphines wear off. It takes a moment to find a position that doesn't cause pain. It takes patience and love to work around the difficulties.

However, I second the taking of pills right before or right after sex. Once your endorphines wear off the pain is worse than it was before (at least for me).

hippie!

SEX is soooo hard now! No pun intended

The pain is so much worse afterwards, really makes me suffer for trying to have a good time. The climax is almost impossible because I have a tendancy to tighten up around that time, and it really causes extreme pain. Like throwing ice water on me.

If I medicate before hand it is like shooting pool with a rope, so no help there.

Even with all the problems I wont stop trying

LOL Allen!!

I'm not sure how I would manage now - when J and I were living together I was far better than I am now - I still couldn't walk or weight bear on my legs but I didn't have the same level of spasticity or pretzel ness that I now do. (I mean the fact it takes my carers about 10 minutes every night to take my trousers or knickers off because my legs have twisted around each other - locking them together - might ruin passion a little bit - as might the threat to bite them if they touch me).

It's a hard one. I used to take muscle relaxants before sex and then some painkillers before or after. The worst was the endorphine rush - you'd forget for a moment how horrible the pain is - and then you'd be thrown right back into normal RSD pain + Alloydinic + movement pain - AGH!

Keep on trying - hey viagra is supposd to improve blood flow isn't it? I vaguely remember a girl with RSD being treated with it and finding it very succesful - hey, symptom reduction AND sex - sorted LOL!

Good luck - and the same to you Mark!! I'm sure you could pick up some girl on the virtual vacation!!

Love

Froggsy xxxxxxxxxxxxxx

Allen your killing me!!! What a great way of comparing sex!! "Shooting pool with a rope"!!!!

Dang is it ever!! Too much effort at this point. I'm a VIRGIN all over again now anyway! Figure it's been so long I would just start all over again from scratch!!!

I'M GOING TO SAVE MYSELF FOR THAT SOMEONE SPECIAL!!!!


Chin Up Everyone and Hang In There!!!! Mark