[Blazed-kitty]

I have been living with my boyfriend throughout my most recent CRPS flare up. Since the pain has basically taken over my whole body I haven't been in the mood to have sex with him because it hurts my body so much. He has become so distant towards me. He is always trying to get me to do things and complaining about how he is "frustrated" he no longer even cuddles me at nigh . I am suppose to be getting those back shots(sorry I suck at rembeeing what they are called) he is always saying once I get then everything will be "normal" again. He underestimates my pain. He does so much for me and I love hi . But he thinks his "frustration" is more important than my pain.
Any one have any advice?

Det him to watch this ad take the experiment https://www.youtube.com/watch?featur...9g&app=desktop
Also to read this
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!


If he doesn't change you are better off without him

[Blazed-kitty]

Originally Posted by Kevscar

Det him to watch this ad take the experiment https://www.youtube.com/watch?featur...9g&app=desktop
Also to read this
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!


If he doesn't change you are better off without him

I loved this so much thank you so much. I'd love to talk to you more!! Thank you so much for this!! Everything you said was so incredibly related able. And I wish everyone understood this.
I loved this video as well

[Russell]

Originally Posted by Jennareimer

I loved this so much thank you so much. I'd love to talk to you more!! Thank you so much for this!! Everything you said was so incredibly related able. And I wish everyone understood this.
I loved this video as well

Wow Kevscar,
Great advice you gave.
I think we all suffer from this lack to be sexually active, especially at times of flare ups.
If you don't mind me adding, I think for total understanding by someone requires the ability to let ones soul to leave feelings of one self. I don't mean to sound crude here. Just MHO...

[Littlepaw]

Hi Jenna,

This is such an important topic, thank you for raising it. And, Kevscar thanks for the thoughtful response.

This illness is a big obstacle to intimacy on so many levels. We are effected physically, emotionally and cognitively. Sometimes we are crabby from pain and prickly towards our loved ones even if they did nothing wrong. We may feel emotionally vulnerable and our esteem may suffer. Medications may dampen our interest. Our partners may be fearful of hurting us. All of this has an impact on our relationship. Anytime there is a problem of this magnitude in a relationship it warrants open discussion. It is important for both of you to talk about your feelings and needs. I hope you beat this thing back like you did before. But you don't know when that will happen or to what degree. I hope your boyfriend is open to learning more about CRPS so he can better understand you. Don't be afraid of asking him to look at videos or literature. Sometimes people are more open to information in black and white or from "experts".

Right now you don't need the pressure of worrying about his "frustration". However, physical closeness may lead to easier emotional intimacy and tender feelings. Physical touch is an important part of human relatedness. And sex has benefits of decreasing stress, improving circulation, increasing "feel good" hormones, etc. There are a million ways to get creative about meeting our partner's needs (and our own). Many of which can involve minimal or even no touch. He's a big boy, he can take care of himself, but you can be present and be involved even if it is just with stimulating conversation . And who knows where that may lead for you...your brain might get more involved than you anticipate and distract you from pain.

I think it is important for us, the sufferers, to experience touch that feels good. That may be the Big O or it may simply be a gentle touch to a part of our body that doesn't hurt. Get what painless physical input you can if at all possible. It is healing and signals the brain that there are better things to focus on. I hope for your sake there is some part of your body that doesn't hurt. When I was in my worst pain I found myself craving gentle caress in the areas that weren't painful. A gentle hand through the hair is a great pleasure and this simple thing can make people feel closer and loved.

I am sorry that you're having to deal with this right now when you have such stress and pain. Your boyfriend's frustration is not more important than your pain. And In no way do I want to minimize your suffering. I am just hoping you can find a way around it!

Sending gentle hugs,

[PurpleFoot721]

Wow!!! I don't even no where to begin with this one. The other posts here were so well done that I think I am going to just keep this rather short.

Intimacy is a tough thing to deal with when the pain of CRPS constantly gets in the way. My husband has been absolutely wonderful through all of this and has learned more about this horrible thing than I have. We have not had sex in, I am guessing four or five months now. He knows that I am in pain and understands that the pain quite often takes its toll on me and my mood. He know how to read me extremely well and can tell when and where he can touch me. We take each moment one moment at a time. If we are able to have an intimate moment, we take advantage of that time. If all he can do is wrap his arm around me or hold my hand, that's what we do. There are plenty of times that I want him to hold me, but the pain does not allow it. It is very frustrating for both of us, but we take advantage of the moment, even if they may be small, to enjoy each other. We know we love each other, but there are times that all we can not be close to each other.

Take advantage of the times that you do have. Cherish each moment that you can. I have heard the term Carpe diem several times in my life. Don't seize the day, seize the moment.

Alaina

[Blazed-kitty]

Originally Posted by PurpleFoot721

Wow!!! I don't even no where to begin with this one. The other posts here were so well done that I think I am going to just keep this rather short.

Intimacy is a tough thing to deal with when the pain of CRPS constantly gets in the way. My husband has been absolutely wonderful through all of this and has learned more about this horrible thing than I have. We have not had sex in, I am guessing four or five months now. He knows that I am in pain and understands that the pain quite often takes its toll on me and my mood. He know how to read me extremely well and can tell when and where he can touch me. We take each moment one moment at a time. If we are able to have an intimate moment, we take advantage of that time. If all he can do is wrap his arm around me or hold my hand, that's what we do. There are plenty of times that I want him to hold me, but the pain does not allow it. It is very frustrating for both of us, but we take advantage of the moment, even if they may be small, to enjoy each other. We know we love each other, but there are times that all we can not be close to each other.

Take advantage of the times that you do have. Cherish each moment that you can. I have heard the term Carpe diem several times in my life. Don't seize the day, seize the moment.

Alaina

I wish he would understand this. Its like now that I can't have sex. Then he feels there's no point in cuddling because its not leading to it. I just gerl so broken by this. Its making my depression worse

[PurpleFoot721]

Some men just don't get it, some do. If you feel that he is pressuring you and no longer feel he is capable of understanding that you both need to be patient and wait for that right moment when you are feeling well enough to be able to be intimate, that moment when you can handle his touch even a gentle one. If he is not willing to learn about CRPS and what it does to you and how you feel each and every day. If he is not willing to understand that CRPS can cause you issues not only physically, but emotionally as well, then perhaps he is not the right person for you. I hope he is willing to learn and perhaps you might be his best teacher. This is a lifelong situation and if he wants to be part of your life, he needs to understand those things.

A relationship is about caring, sharing and learning from each other each and every day, loving what the other loves, and living for each other. A relationship needs to be worked at or it will start to fall apart or become another boring relationship that many, not all, long term married couples fall into. It can be done through intimacy, but quite often it is not. Try to find something that the two of you can share together that you are capable of doing. If you are hurting too much, let him know that and perhaps he will do his best to keep you company and keep your spirits up. Even if it is just siting around and telling each other stories, jokes or anything else.

My husband always says he lives for dimples. I believe him. He tries every day to put a smile on my face. After being together for 9 years, he always finds a way of doing that many times each day, no matter how I feel. I hope your boyfriend is capable of finding a way of doing that for you as well.

Alaina

[Littlepaw]

Jenna,

Purplefoot has given sound relationship and self-care advice. Now I get to jump in with the fun stuff .

Don't let limitations come between you. Your boyfriend's needs getting met does matter. They don't trump your physical needs but they can affect how close he feels to you and are potentially creating stress and division. Our partners can't experience our pain and needs are relative. His are not going to go away. Hopefully they can be reigned in a bit...

With your current condition you should be in charge. Do whatever is comfortable for you that allows you to help your boyfriend feel close and loved. By all means don't settle for no cuddling. Let it lead to something...just let that something look different and be something you can tolerate. It might require timing of pain meds, alteration of methods or doing something new and wacky. Now's the time to try new things! I will refrain from making specific suggestions...However, I encourage you to let your imagination solve the problem in a safe and creative way.

I believe it is possible to find a solution that allows you both some level of fulfillment while keeping you comfortable. Don''t give up on this. Sex can be a healthy, healing distraction from pain and help you strengthen your bond during a difficult time. And it can definitely contribute to happier partners...

[mama mac]

Jenna.
Just wanted to say thanks for bringing this up. Thanks to all of you that have contributed so generously. I think this is probably a tough area for many of us and finding a balance can be difficult. It's something I struggle with and have not found my comfort zone so I have little to offer except my thanks. ~mac