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