Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-18-2015, 09:22 PM #11
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Great topic and wonderful responses!

My husband and I have been together over 20 years. I have had chronic pain and health conditions for over 30 years. He never knew me when I was completely well. (I was less limited 20 years ago, I will admit. I would not marry him for the first 10 years because I was concerned he did not know what he was getting himself into. He still wanted to get married 10 years later. Many couples don't last that long, without the challenge of chronic pain/illness.) He's a gem. we are good to one another, always.

As Littlepaw mentions, while he needs to take my needs into consideration, I also take his into consideration. We have figured out what works for us.

I also make sure he is keeping his balance in life by ordering tickets to some of his favorite musicians, etc. If I can go, great! If I cannot go, he still goes and takes a brother, a nephew, a friend. He returns with his batteries charged and is in such a better place than when he tries to stay at my side all of the time when I am laid up for lengthy periods.

A truly important topic!

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Old 10-18-2015, 10:05 PM #12
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This is not me found it posted a few years back saying anyone could use it.
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Old 10-19-2015, 12:14 AM #13
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Heart Health Benefits of Cuddling...

Ten Incredible Facts About Cuddling...


http://www.lifehack.org/.../10-surpr...at-make-you-wa...

Jenn, Offer to show these to your loved one. You both can benefit from cuddling. If he won't cuddle up with you, you may need to get a dog to cuddle with?

In Tibetan Buddhist medicine, couples/partners are encouraged to sleep together at the hospital when one is admitted to the hospital. This is because of the known health benefits of touch during sleep.

My husband climbs into the hospital bed with me, usually to get a reaction out of staff in the ER. LOL. The ER stretchers are a bit smaller than a hospital bed, so it gets very crowded.

I hope you feel better soon!
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Old 10-19-2015, 12:31 AM #14
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Thanks everyone for these wonderful replies and advice. Itmy boyfriend hasn't known me with out this illness. But since I've known him up until about a year ago it has been tolarable enough to handle almost anything. But now tgatbit is my entire body. I just can't handle it anymor . I feel like I might have to stay with my mother until I get all the help I can to get back to normal life. Anytime I try bringing up whatbim going threw he just can't handle It. I've already caused his depression to come back. I feel like I am just ruining this relationship.I feel like a ruined him...idk. Sorry for ranting a bit. Just a lot of stress
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Old 10-19-2015, 12:56 AM #15
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Jenn, It's okay to take a step back, to decide if you need to do life differently for now, to stay with your mom until you get your own life in order.

We can easily feel like a burden to others, feel like we are causing them too much stress, adding to their own struggles with depression, etc.

Honestly? I watch my husband for signs of depression. When I see those signs, we have a talk, again. We talk about what he needs to regain his balance and we arrange for his needs to be met, immediately. He is a very sensitive, empathic man. He will get depressed watching anyone else go through long episodes of pain. He needs me to help him to stay in balance and he needs me to tell him it's fine for him to do what he needs to do to regain his balance.

At the same time, I also need this. I sometimes need space. We allow for this.

If you need to be with your mom, it's fine. It may even be best for now? You know what suits you best at this time. Sometimes, trying to carry on a relationship is too much when challenged with so much pain and trying to focus on recovery.

Have compassion for yourself, too, Jenn. Consider your needs, too.

Separations can be helpful in many different ways.

Think through how you can best recover, as this is vitally important.

We are all here for you.

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Old 10-19-2015, 06:44 AM #16
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Jenna,
Everyone here has offered excellent advice. One thing that stood out to me is Deja's advice.
It sounds like Deja and I have husbands with similar personalities. I was in the hospital for two months while we were married in college, and nearly every night he slept in the small hospital bed with me. Also very similar to Deja and the others that posted, I always try to be very aware of his needs, physical, emotional, all of them. Sometimes I feel like he just needs my sincere gratitude even though he has never said it I feel like he needs to hear a sincere "thank you for this........" He always is happy when I'm appreciative. We were best friends for 4 years before I would commit to dating him, and I've been sick the entire time. Being sick is a part of life for some people, but it doesn't make us any less of a person. I always tell our four children to date and marry people that love them unconditionally. In the vein of what Deja was saying, even as a grown woman I still on occasion go to my mom and dad's to have a slumber party with my mom, and give my hubby a night of respite. His dad lives on the beach, and he occasionally with my persistence will go spend a weekend with his dad, where they stay up late listening to music and spending the days in the ocean. That is my husbands happy place. It is very therapeutic for him. My point is both of you do things that will take care of yourselves, and then encourage one another to do those things. As many others have posted, open communication between a couple is essential. You never know.....it could be something very small that you talk about that produces the biggest outcome. Sincere best wishes.

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Old 10-19-2015, 08:50 AM #17
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Hi Jenna,

The most important thing is taking care of you and getting yourself as well as possible. If staying with your Mom gives you the support you need and less stress then it certainly sounds like a good, viable option. You don't need additional stress. It impedes healing. Your Mom has been through this with you and understands what is happening.

It sounds like there are other issues besides a change in your sex life. Having stress in the relationship, feeling that you don't have support and feeling responsible for your boyfriend's mood aren't helping you get better. Our stress does have a big impact on our condition. Stepping out to your Mom's may be a big relief. Then you can just worry about you for a while and maybe your boyfriend can process what is happening a little better when not faced with it all the time. You two can go forward from there and see what works.

Choose the solution that optimizes your recovery. You deserve peace and well-being.
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Old 10-19-2015, 10:32 AM #18
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Wise women have spoken about caring for yourself and choosing what is best for your recovery. Your recovery must come first and the relationship will either weather the storm or he is not the right person to live with someone that has a chronic pain condition. Go where your heart tells you it is there you find comfort and peace. ~mac

Last edited by mama mac; 10-19-2015 at 11:10 AM. Reason: typo
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Old 10-21-2015, 04:56 PM #19
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Quote:
Originally Posted by Jennareimer View Post
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?
I would like to add something here if I may. Just because we have CRPS doesn't remove the fact that contained in these body's of ours is either a man or a woman, each with our own needs, wants, and desires in relationships. So, in any situation, it is not just about her understanding him or him understanding her. Intimacy is an US issue a WE issue. And one thing is for certain. The moment that the needs of one or both are not being met, the relationship begins to come loose at the edges and the couple begins to separate. So, when a terrible disease like CRPS comes along it is like throwing a monkey wrench into an engine that was working before, but is struggling to fire on all cylinders now. CRPS changes everything, so it must be discussed as to how the disease affects the intimacy and the needs which a man and a woman still have in the midst of a disease that has changed the way things used to be. So sitting down and truly talking about this disease and how it affects our needs as men and women can truly become an instrument to strengthen intimate relationships and further our growth as people. And the end result can be a beautiful experience for both.
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Old 10-21-2015, 05:52 PM #20
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Quote:
Originally Posted by DejaVu View Post
Great topic and wonderful responses!

My husband and I have been together over 20 years. I have had chronic pain and health conditions for over 30 years. He never knew me when I was completely well. (I was less limited 20 years ago, I will admit. I would not marry him for the first 10 years because I was concerned he did not know what he was getting himself into. He still wanted to get married 10 years later. Many couples don't last that long, without the challenge of chronic pain/illness.) He's a gem. we are good to one another, always.

As Littlepaw mentions, while he needs to take my needs into consideration, I also take his into consideration. We have figured out what works for us.

I also make sure he is keeping his balance in life by ordering tickets to some of his favorite musicians, etc. If I can go, great! If I cannot go, he still goes and takes a brother, a nephew, a friend. He returns with his batteries charged and is in such a better place than when he tries to stay at my side all of the time when I am laid up for lengthy periods.

A truly important topic!

DejaVu

My Goodness DejaVu, you are one gifted and wise woman. WOW.. I have tremendous respect for you. Spot on! WHO-WAH
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Last edited by -Spike-; 10-21-2015 at 06:14 PM.
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