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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 06-05-2013, 03:55 AM   #1
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RSD and Intimacy

So here is my personal question to anyone willing to answer....how are you handling being intimate with your spouse with the pain of RSD?

 
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Old 06-09-2013, 09:33 PM   #2
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Re: RSD and Intimacy

Guess nobody wants to answer that question. I will since I really don't feel like I am the only one with the same problem. I think for all of us, well maybe most of us anyway, one of our main priorities is protecting our body part with RSD from being bumped, touched or anything that will increase the pain. At least , that is how I am, which makes intimacy extremely difficult when your mind is preoccupied with protecting yourself. You can't just relax and enjoy when you feel like you have to stand guard over your RSD. I have no idea what the answer is but feel very fortunate that I have a husband who tries to understand what I am going through.

 
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Old 06-10-2013, 09:22 AM   #3
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Re: RSD and Intimacy

Cyndel, thank you so much for responding, I truly appreciate it! I still try but it is so difficult. My husband is very understanding but it scares me that as this progresses, it will get to a point to where I wont be able to tolerate the pain anymore. They put me on Cymbalta which very much hindered things! I took myself off of it because, my thinking is, if I am going to be in a lot of pain doing this, I at least want to get something out of it!

 
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Old 06-11-2013, 04:11 PM   #4
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Re: RSD and Intimacy

Hi jewlz67,

I saw a very good discussion on this subject on another board, and I hope this one can take off, too.

My RSD has been in remission for about 5 years, thank God, but I still deal with fibromyalgia and CFS. My husband and I basically have two kinds of intimacy - the "maintenance" kind when I am feeling pretty bad and can't do much ("sorry, honey, you have to do all the work!"), and the kind we save my energy up for and enjoy much more. The latter is rare, but great when it does happen. Of course, I get the post-activity crash after, but it's worth it.

 
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Old 07-11-2013, 07:59 AM   #5
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Re: RSD and Intimacy

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Originally Posted by jewlz67 View Post
So here is my personal question to anyone willing to answer....how are you handling being intimate with your spouse with the pain of RSD?
It has been challenging to say the least. It has totally changed our level of intimacy. I have had RSD going on 5 years. And it has gotten worse . Also on top of that got intercystis which causes pelvic floor,and bladder pain. I go through those flares. The onset of this was during the last few years. Plus all the med's really affect things. I just don't feel it is like I am numb or in great pain. My husband sort of tries to understand, but I can see he is frustrated and really over this. It has gotten to the point I think he wishes he could leave me, but feels guilty, but wants to have a normal relationship. And with RSD fir me there is no such thing. I hope it is different for u . Everything in my life has been affected by this disease.

 
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Old 07-12-2013, 10:32 PM   #6
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Re: RSD and Intimacy

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Guess nobody wants to answer that question. I will since I really don't feel like I am the only one with the same problem. I think for all of us, well maybe most of us anyway, one of our main priorities is protecting our body part with RSD from being bumped, touched or anything that will increase the pain. At least , that is how I am, which makes intimacy extremely difficult when your mind is preoccupied with protecting yourself. You can't just relax and enjoy when you feel like you have to stand guard over your RSD. I have no idea what the answer is but feel very fortunate that I have a husband who tries to understand what I am going through.
I do know that if u connect it to a medication you take and most of the antidepressants they use for pain list that as a side effect. The problem is that they are long acting and stay in your system, but if younare on opiate based meds that cause lack of fuction, intrest because it wasn't like you were before. If u know you want to have relations that night try to hold off on taking your pain meds till after. You might have more pain, but you at least for a little while be responsive to what is going on. I hope I didn't offend anyone and talked to my doctor about this., but realistically I am sure most of you have supportive understanding husbands, but if nothing is happening at home I feel they can turn elsewhere for it. And the way I feel sometimes I wouldn't be surprised if that happened. I am not the person he married and we can't do the active things we u to do. Communication is a must so they realize it has nothing to do with them it is this damn disease and the pain and the meds.

 
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Old 07-16-2013, 05:55 AM   #7
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Re: RSD and Intimacy

Vlaud, I am so sorry that you are going through that. My husband has been really understanding with this whole mess! I still try and on days that I cant, I will try to at least take care of him, if you know what I mean. I have a girlfriend who has RSD and she hasn't been intimate with her husband for over ten years! Needless to say, they are no longer married. I don't want to get to that point and I pray I never do! I also understand the feeling of being "numb" which happened while taking Cymbalta. From my understanding, any type of drugs anti-depressants. SloRian, thank you so much for your input. I am so thankful to all of you who have replied!!!

 
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Old 07-26-2013, 01:00 PM   #8
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Re: RSD and Intimacy

Here's a funny situation - for me, when the pain is worse, it helps to bounce on one of those large bouncy ball things (exercise ball? whatever those big rubber balls are called) because it gets the skin moving a bit and the underlying lymph stuff moving around. It sounds ridiculous, but it really DOES help quite a bit. However, I've found that the sight of me bouncing on the ball is a turn-on for my husband for some reason Anyway, so when I have those worst pain days when I do NOT want to be intimate, I have to bounce on the little ball when he's not around!

Last edited by SloRian; 07-26-2013 at 01:02 PM.

 
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Old 07-26-2013, 09:08 PM   #9
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Re: RSD and Intimacy

That is hilarious!!! Thank you, I needed that laugh! I had to do that in therapy. Plus, they had me sitting on that ball, turning with my hips and pelvis only, doing a circle one way then going back and doing it the other way....in front of ALL the patients that were there! I looked like I was trying to get off on that ball!!! I used to joke with my physical therapist and asked him if he was trying to prep me for going home to my husband! hahaha!!!

I am really starting to have a hard time doing anything right now and it is starting to be more noticeable to my husband, which in turn makes him not want to try to do anything. This stupid disease can be so frustrating!!! Even if it kills me, I'm gonna keep trying because it isn't fair to either one of us and as I keep trying to say, life goes on, regardless of the pain!

 
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Old 07-27-2013, 09:39 PM   #10
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Re: RSD and Intimacy

That is SO funny about having to do that at PT!! It makes me wonder what type of expression it would be best to put on ... probably kind of a "PT is so boring" type of look? Certainly you don't want to look too interested or like you're having a good time

I agree - keep trying Go for it! Fight! And then come here to vent and get support during those extra-hard times.

Last edited by SloRian; 07-27-2013 at 09:40 PM.

 
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Old 07-28-2013, 07:12 PM   #11
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Re: RSD and Intimacy

Thank you SloRian! The last thing you wrote totally made me tear up!!! I really do appreciate this site because of all the support I get from everyone here and knowing that I can give others support as well!!!! I am so glad to have found such a wonderful community of online friends! Sucks that it has to be with this stupid disease, but I would totally be going crazy without you all!!!!
Julie

 
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Old 08-29-2013, 09:24 PM   #12
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Re: RSD and Intimacy

Quote:
Originally Posted by jewlz67 View Post
So here is my personal question to anyone willing to answer....how are you handling being intimate with your spouse with the pain of RSD?
Jewlz67 I know EXACTLY how you feel. it is so hard I am in the same boat as you. I really don't know what to do. My domestic partner and I have been together for 16 years and have always had a very health intimate life. However I've had this stupid condition for over a year now. I have tried so many times but I run into a lot of issues. I can't stop thinking about not letting anything touch my leg/ankle/foot and then the depression of having this stupid condition top of that. with all of that I have a very difficult time performing. Most of the time I can't. He is VERY understanding but it is nothing like it was prior to this condition. And I know they have "meds" for this and I've tried it. doesn't work. My dr. tells me that it's because all I'm thinking about is "protecting my injury" and most of being intimate is mental. I think it's a lose lose situation. I hate it but really don't know what to do.

 
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