There are some really helpful and touching things in these posts. My daughter is definitely frustrated by people not understanding, especially on my husband's side of the family. I don't have RSD, but I've had fibromyalgia/CFS for many years, and this applies to me, too. I think I will send some of these beautifully-written lines to my in-laws.

I especially like:


... and here I am, pretty much quoting everything! It's just so well-written and expresses what I feel so well.

I'm the fiance of someone with RSD. We got together 4 years ago which was after she was diagnosed, but before it worsened. After going with her to a few doctors appointments and one emergency visit I understood everything a lot more. Nothing like witnessing the person you love struggle to get out of bed to use the bathroom and having a doctor write you off as another junkie. I've had to make a lot of adjustments in my life and plans, usually to the dismay of others 'well why can't you just come and leave her home' to which i usually respond, we'll just do it another night or actually I don't feel well so i'll call you next week. i found that she would never really ask for help with things, so i kind of started just doing them for her and just ignoring the fact that i did it, like helping to button a sweater or tie her shoes. I tell her constantly, I really appreciate you helping me clean up, but why don't you let me finish so we can both enjoy going out later and not waste energy on the small stuff. When we were dating I remember she would hide a lot of how she was feeling. I always figured she didn't like dinner, now I realize it was because she couldn't cut the food and was too embarrassed to even try! the best advice i could give you is patience and a sense of humor. For us it was reaching a certain level of comfort with each other, and her really knowing that I would always be there for her. I know you guys just started dating, but if it gets serious I think it's just really important to know that this might not change, it might get better, it might get worse.

Your partner is a lucky woman, even with the RSD. Having a supportive, loving and understanding partner is the best medicine in the world :)

Bram.

Amen! Isn't that true!

I'll say the same thing to Senathon and Gabriel as I have to JimKing, who's wife has RSD.....as difficult as their lives must be because of RSD, they are truly blessed to have someone in their corner who is trying to see beyond the RSD monster. Thank you for being that support.

Just an update on our dating. We are doing very well, she has started to tell me more about her condition and she is accepting me being around her and touching her(holding hands, hugging, kissing). She is so wonderful! For me, I think this will be the one.

We are still experiencing some miscommunication issues about she thinking that when I come over, that we have to go out. I know when we do go out, she usually has a flare up that hurts her the next day.

If you know that you are going out for the day, would you risk a flareup? When I come over, my girlfriend and I go out and she has a flair up the next day. I have told her in the past that I am content in staying home. Do you think she is goes out because she feels guility or does she want to go out?

I would like some opinions. I hate seeing her the next day breaking down crying in pain.

I was divorced about 20 years ago, and I have not seriously dated anyone since getting RSD almost 15 years ago. There are things that I do, though, that I know will make me worse the next day, maybe even for many days. It is very easy to become a person who stays in the house and only goes out for medical need, grocery. It is a balancing act. I love flowers, nature, photography. I will go out on good days and do a bit of photography at a local arboretum. I can drive around there, with little walking. Or, go to a conservatory in the winter where it will be warm. Seeing beauty helps my mind. I can't stand vibration, so I don't go to movies or concerts but I will go to see comedians when I can afford it. Does your girlfriend have a DVD player? Pickup takeout, a movie, and enjoy at home with her. There are lots of ways to have date night at home and be creative, romantic, thoughtful.

I will say, if you stick with her, you may have a rough way because of her RSD. Yet, challenges often make for the deepest most satisfying love.

Just the fact that you are here trying to understand her RSD speaks volumes about your character.

Now, if I could find someone with the same attitude around my age, in my area.... :D

We usually plan everything out and pick and choose what nights to go out. Usually we only go out when she can stay in bed the entire next day without any problems. Every restaurant has become take out for us. We usually tip the hostess and explain that we're not feeling well but really enjoy their food and want to take it home with us. not having to sit out usually really helps her. we pretty much live on the couch. if we're doing a lot of walking, i'll usually carry her cane for her until she thinks she might need it. We definitely modify a lot of what we do. I've found that the cane helps a lot. If we go out to a bar or a club usually the staff will help bring over a chair or in theaters people will offer their seats. her RSD is mostly in her upper extremities but her hips get exhausted from her posture and something as simple as a $10 cvs cane can change the whole night.

It's possible that she goes out because she feels guilty as you say...but I would say it's more likely that she goes out despite the flares because she WANTS to. So much is taken away from us when we get RSD and many of us will put up with a lot just for that little bit of normalcy or so that we can do something that we really want. If she really wants to spend time with you and to go out and experience things with you...then the flares the following day are probably worth it to her.

The thing I've come to understand is that no matter what I do, I am in pain. There is always pain. Yes...the flares are worse than the "regular" pain. On the other hand...I went so stir crazy it wasn't even funny when I was trapped inside my house on the couch. If I stayed home every day and took it easy I have no doubt that my pain levels would be much much better than they are now. BUT...I would not be happy. I have much higher pain levels on a daily basis because I work full time, I go out and spend time in my garden, and I like to go out and do things including taking vacations...AND I AM HAPPY. That happiness is worth so much in the pain department.

It's unfortunate that for many of us with RSD it's an either or choice. There are things we can do to prepare for the pain or to take the edge off (I am glad she uses the cane if it makes things better for her...I use a walker and it has made a world of difference). But we all have to make decisions about what activities we are going to do, are they worth the pain cost, etc.

I am so very happy to hear that the two of you are doing well. So long as you have made it clear that you guys don't NEED to go out for YOUR sake...let her make the decisions about what SHE wants. If it were me...I would want to go out and enjoy what I could. That she plans your outings based on when she has a free day afterwards to rest and recoup shows that she understands what she is doing and the cost of going out. She CHOOSES to still go out and if that makes her happy then it's probably worth more to her than you could ever know.

That was an excellent post, catra121!! The whole balancing thing is SO true. Sometimes, it's worth having a life, and doing something you really want to do, even though you'll get a flare.