Tips on dating someone who has RSD
 

I have started dating a very wonderful person that has RSD. Several times on a date, she has moved away and walked away for a short while and came back with either a hug, cuddle, or kiss. She has not really explain too much about her condition, because I think she is afraid of scaring me off with her condition.

Can anyone suggest about how I can learn more from her or tips about how to respond to her condition. I been responding as a nuertal tone, because I don't know what to say.


I want her to understand I am willing to date her because of who she is and the RSD is what makes her the person I want to date. If that makes sense.

The best advice I can give you is to just treat her normal like you would anyone else. Be supportive if she needs support. If you see that she needs help with something just do it and don't make a big deal about it. Don't constantly ASK if she needs help because it will make her feel broken or "less than"...at least that's how it makes me feel. As you get to know her you will get a sense of things that are difficult for her that you can help with and things that she is willing and able to do on her own. Don't constantly bring up or ask her if she is doing okay or treat her like a china doll. Don't pressure her if she doesn't want to do something. She may not tell you that she's having a rough day but you should assume that there's a good reason for her not wanting to do a particular activity or go out on a certain day and suggest something else. Give her space when she needs it and stay close when you can.

It's a very difficult balance because you should be supportive but at the same time you have to treat her like a normal human being and not like she is broken. My boyfriend does a great job with this and I really can't even express how much it means to me that he has been so wonderful through all of this.

It's wonderful that you care enough about her to want to be with her despite the RSD and that you want to learn as much as you can about it. Do the research because it will give you a good idea of what sorts of things can trigger our pain or are more difficult as well as things that can help. But we're all different too so you'll have to learn about HER situation and the specifics of her needs. She may or may not be comfortable talking about her condition (she's probably concerned about whining too much and bothering you), and you'll have to respect that. Just take in everything you can as things come up.

More than anything though...treat her like she is normal and make sure she knows you want to be with her. Everything else will work itself out in time.

I have learned from my asperger's son that there is no such thing as a normal person. ;)

I appreacte the feedback you provided. My main concern was either over or under reacting to her needs.

It was an interested response from her seeing me opening, closeing the door and helping with the seatbelt of my truck for her. I think she thought at first I was treating her like a china doll, but that is how I treat my dates. I am not old fashion, I just like treating any girl/lady(any age) as a lady.

Also thanks for the last tip, I did express to her that I do want to be with her, even if she feels really bad that she can not go out.. :)

check out rsds.org. They have alot of good information about RSD/crps. The best thing I can tell you is try and familiarize yourself with the disease and then ask specific questions to that person.

Good luck we are here.

When it comes to reacting to her needs...let her tell YOU what those needs are. I get very annoyed when someone asks me if I need help with something or asks me who is helping me with something. If I need/want help I will ask for it. One thing about RSD is that is has robbed me of my independence in some ways and I resent that. So when people try to take other stuff away from me it makes me mad.

On the other hand...there are times I really struggle with something that someone else could do very easily. In those cases...if someone is standing there doing nothing and doesn't offer to help I get annoyed by that too. BUT...I would have been annoyed with that prior to RSD too because I can't stand lazy people.

Like I said...it's a fine line. I just want to be treated like everyone else with the same respect.

That said...I don't mean to imply that YOU change your personality either. If you are someone who ALWAYS goes out of the way to help other and it's just your "style" then that's fine. Just make sure she knows that though and demonstrate to her that you don't just want to treat HER that way but everyone. Because my point is that you should treat her the same as you would anyone else.

You sound like a really good person and I have no doubt that you will figure out the best situation for the two of you as a couple. I understand that my view may not be the same as others...lots of people WANT to be taken care of and want others to walk on egg shells around them. I don't know what type of girl your girlfriend is...but this is just my personal take on things and how I want to be treated.

I was thinking, just talk to her, get to know her, ask about it, if she feels comfortable enough to share with you then she will.. :)

There is often hypersensitivity with RSD, touch, heat, cold, breezes all can be uncomfortable to painful for RSDers.
Depending on her location/s of RSD pain, maybe that was why she moved away, then came back with a hug etc.

This may help
Please read my life with RSD/CRPS

These are the things that I would like you to understand about me before you judge me.

Please understand
that being sick doesn't mean I'm not still a human being
I don't feel well often times and I might not seem like great company, but I'm still
me stuck inside this body.
I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.
Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.


Please Understand
the difference between "happy" and "healthy".
When you've got the flu you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time, in fact I work hard at not being miserable.
So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.
Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.



Please understand
that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.
Imagine an athlete after a race. They couldn't repeat that feat right away either.
With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.
So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.



Please remember
that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.


Please understand
that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.
Please don't attack me when I'm ill by saying, "But you did it before!".
If you want me to do something, ask if I can and I'll tell you.
In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.



Please understand
that "getting out and doing things" does not make me feel better, and
can often make me seriously worse.
Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.



Please understand
that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.



Please understand
that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.
It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.



Please If
you want to, you can suggest a cure to me, but please don't act as if
it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.
If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.
There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.
I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand
that getting relief from an illness like this can be very slow if not imposable.
People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.



Please understand
that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.


I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.


THANK YOU!

I recognise that piece Kevscar posted, it's all so true...

Here's a little thing I wrote a while ago... It is made up of a couple of online lists merged together and then I changed a lot of it!

***
CRPS is the most painful form of chronic pain that exists today.

When you suffer from chronic pain, you have to constantly think about everything you are going to do that day, and how it will affect your disease and your pain level.

Therapies and pills are part of what we have to do to get through the day.
Unless you have RSD/CRPS yourself, please don't suggest a 'cure', magic pill or new therapy to us. We have tried so many things, and our doctors and therapists know best how to help. Thank you so much for trying to help, but it is highly unlikely that what helped you will help us.

Sometimes even a breeze or cold temperature causes deep pain, so please be aware of the potential for terrible pain from things you might take for granted, like a bump, knock or scrape. This is why we sometimes seem anxious about simple things!

Being in chronic pain is a full-time job, one with no holidays, terrible benefits, and no way to quit. We would prefer a normal job every time.

Chronic pain affects the entire family, not just the patient.

It is an invisible disability. Even other pain patients will sometimes forget that they cannot see your pain and make assumptions based on what they can visibily see.

A chronic pain patient may have a good hour or even many good hours in a day where they can "appear normal" to everyone else, but most people don't realize the price that they paid before and after.

The positive involvement of loved ones means the world to a CRPS patient.
Friends and family can find all this very difficult to accept, and frequently misunderstand or make assumptions. When your life has already been turned upside down and your future changed by something so cruel, this is a big factor in the depression so often associated with a painful condition like CRPS.

Your understanding means the world to us.
***

Hope it helps a bit :)

Bram.

You deserve serious props for looking into this & asking other patients
 

I agree with most of what others have said here because I too suffer from RSD/CRPS.
I Haven't posted here for a long time & your post brought me back because I struggle with dating now, too. Mostly because I am nervous about how people will understand, having had many close friends & relatives that don't get it it because it is, largely, a disability you cannot see most of the time. We become really good at faking feeling good to make others comfortable but we can only do that on days when it isn't too bad & for short periods of time. I'm nearing my 8th year of having this & still encounter it with people. I often push myself past my physical limits to avoid letting or what I perceive as letting others down, letting them see how I feel because I don't want sympathy & also know some people just won't stick around if you can't do what they want to do, which may be something as simple as standing in a crowded social situation when chairs aren't available to a simple walk. You find out who your true friends are and aren't, but regardless, a lot of people have difficulty being around people with any type of chronic pain or disease.

So, even though I want to begin dating again, I always worry about finding someone that will understand what my life is like & be ok with the fact that there are days when I will have to cancel at the last minute because flares can strike at anytime for no reason. We have no control over it, which is a hard thing for us to cope with. Add feeling like you are letting someone down because you have to cancel plans at the last minute or have a hard time planning anything because you don't know how you are going to feel that day & it adds a lot of pressure.

I applaud you & suggest you just do your research (rsds.org is the best place to get the info you need to understand & support her) so you can grasp what life is like for her, but also don't treat her like she is RSD. It is just part of her life now, likely forever, but we are not defined by it. It is a hard task ourselves just to learn to accept our new limitations and lives because for all of us, it changed our entire lives in an instant & in our mind, we are still the person we were before it struck, so there is a disconnect between what we want, think, etc and what we can actually do. We know if we push ourselves we will likely pay for it for days or weeks afterwards. Having someone who accepts that, expects that & doesn't constantly remind us of it but just lets us be & do what we need to do for our mind & then recover for our bodies is pretty incredible & rare.
Once she learns you can handle her bad days in whatever way she prefers (I prefer to be left alone to try & deal with it, not being asked constantly what you can do or worse, suggesting trying things....believe me, we have tried everything) and it doesn't scare you away, you can be flexible, etc., she will learn she can trust you & will probably open up more. Be aware & pay attention to her behavior & moods & you quickly learn the difference between her bad days & more functional days. On days when she feels good, she will probably want to push herself because you want to take advantage of every lucky minute we get, even though we know we will probably pay for it later, let her do it. She knows her body & what to expect by now. Hanging on to any control and independence we still have & can get it very important to us. A good sense of humor is a key characteristic I look for, because if you can find a way to laugh even when you are miserable, it makes life more bearable.

Best of luck yo you,
Darla

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.