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 07-14-2007, 01:57 PM #1
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Default Hello new here

Hello I'm new here I'm so happy I found this place. I had a surgery for my rotator and ended up with this RSD the doctor said I must learn about this so I found this place to find out more. My wife thinks I'm just wanting attention with this since learning about this, she is outside with the next door neighbors and I can hear them laughing and having fun. I do not think I want attention I just want to learn and see if I can beat this thing so I can go back to work and have a normal life again. No one heard me when I said how bad I burned it was like my arm and shoulder where on fire! now I cant enjoy life like I used to and my wife makes fun of me calling me a drug user and lazy, since I gained weight from all these meds I take it hurts me so bad to be called fatty I was always a sporty running track and playing vollyball, sorry for not being able to that anmymore, she mad me cry the other night because I cant seem to be able to please her anymore either I think it is the meds also but she called me more names like limp bisket OOH I jurt so bad I just want to crawl in a hole and die....oh well I guess this may help me
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Old 07-14-2007, 02:31 PM #2
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1totalk glad you made it hear with good people! I'm sure you will find the answers you need here. Never think it is your fault for this RSD I hope your wife and you can get some help like therapy to help you two deal with this.

You are not a drug user you take drugs because you need them to cope with the pain, there is a diffrence. Your wife must understand that you live in pain and I hope you can get some help so she can understand what you are dealing with.

See if your doc can get you something like Viagra, to help you. good luck
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Old 07-14-2007, 03:02 PM #3
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Default Hi 1totalk,

Why not ask your wife to come on here and read some of what the guys and girls are going through here so she can understand the extent of RSD.

There are several men on here but they hardly show their face. Maybe some of them will come on here and tell you what they are going through with it and how they are dealing with it. I know it has to be harder on men due to them being the breadwinners most of the time. Notice girls I said most. LOL

We need the drugs to get through each day with it. The pain is so overwhelming that people can function in a good capacity until they get some of it under control and that takes time.

I'm sorry that you are having such a hard time. I never delt with that issue from my better half. I have to put him in the catagory of sainthood when it comes to dealing with me being sick for 20 years and when I got the RSD I was even worse. Suicidal, crazy, you name it.

No one knows the extent of the pain of RSD until they live it. Thank God that Drs. are letting us have the meds we need most of the time to deal with it.

Hang around and try not to let things get to you.

Ada
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Old 07-14-2007, 05:13 PM #4
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Hello and welcome! SO glad you found us.

The hurtful comments are hard to deal with- I speak from experience. Others have no clue what we go through- RSD is the worst form of chronic pain in the world. You are not just a drug user. This is real and HARD! It is hard because people think that if you are in chronic pain you abuse pain killers, or shouldn't be on them... or that you are faking and just want the drugs. That's hard. So hard.

Hang in there! Sending you pain free hugs and prayers!
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Old 07-14-2007, 06:31 PM #5
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hi, just wanted to let ya know that i too ended up with this sucky disease after a rotator cuff tear. sorry to hear about your wife, geez, i thought it was only the women who got berated like that. anyway, i'm trying to beat it too and this is a great place to get support, info and just plain old vent. welcome and hope to hear from you again. jenny
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Old 07-14-2007, 09:17 PM #6
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Quote:
Originally Posted by 1to talk View Post
Hello I'm new here I'm so happy I found this place. I had a surgery for my rotator and ended up with this RSD the doctor said I must learn about this so I found this place to find out more. My wife thinks I'm just wanting attention with this since learning about this, she is outside with the next door neighbors and I can hear them laughing and having fun. I do not think I want attention I just want to learn and see if I can beat this thing so I can go back to work and have a normal life again. No one heard me when I said how bad I burned it was like my arm and shoulder where on fire! now I cant enjoy life like I used to and my wife makes fun of me calling me a drug user and lazy, since I gained weight from all these meds I take it hurts me so bad to be called fatty I was always a sporty running track and playing vollyball, sorry for not being able to that anmymore, she mad me cry the other night because I cant seem to be able to please her anymore either I think it is the meds also but she called me more names like limp bisket OOH I jurt so bad I just want to crawl in a hole and die....oh well I guess this may help me
Hi there!! nice to meet ya! Wow! I am so very, very sorry that your wife thinks that you just want attention!! hmmm.. Of course you don't want attention, but you should be getting.. both help and support from your wife. Please know, I am not one to make trouble .. but this is plain wrong and I am truly sorry to hear this junk!! Well, you came to the right place, we can help ya deal with your RSD and other pent up rages we experience. I too had surgery from Carpal tunnal and the surgery is what caused me to have RSD I was in denial for a while there. seen 5 doc's, plus 2 specialists to finally open my eyes to it.. and it is for real! I am sory you cried. we RDS patients get so emotionally down and drained at times. It's ok to cry, we understand. Get you some good reading materials on the signs, symptoms of RSD, the effects of our meds. and show them to your wife. do you have a printer? that would be a great help. your wife.. and I am sorry to say this needs to get some help dude!! Now, as for you.. take a deep breath.. come here often, talk to us.. maybe your wife is really scared inside?? can be that she wants you back to the way you were? I'm sorry but she needs to love you, RSD,and most of all supporting you through this nasty beast! take care of yourself Love, Desi
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Old 07-14-2007, 10:35 PM #7
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Please for your mental stability and your level of pain (as stress makes RSD flare up worse) sit your wife down and have a heart to heart with her. Print facts and stuff about this disorder.

rsdhope.org - has a great letter to family and friends.

My jaw dropped when I read your post. I am astonished that during the vows of "for better for worse, in sickness and health, spouses tend to do horribly during worse and sickness. This is a disorder and she needs to be your support (as well as friends who can also help).

Get counseling, ask her to go to counseling with you. Please make sure it is with an expert in RSD. Maybe having a licensed psychologist set her straight might help.

Hugs, I am glad you found this place and feel free to post with any and all vents, good times and bad.
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I AM NOT A DRUG SEEKER,
I AM A PAIN RELIEF SEEKER.
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Old 07-15-2007, 12:07 AM #8
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Wink Welcome

Hi, 1to talk,
To our RSD family.. You have certainly come to the right place for support and understanding. I have recently been diagnosed with RSD and found this forum to be full of wonderful people that are full of information and support.

There are many sites that are full of great information that you may find helpful.

www.rsds.org
www.rsdhope.org
www.rsdrx.com
www.rsdinfo.com

These are just a few that can get you started. There is a wealth of information for you to read up on...

Remember we are here for you and we do understand.

&
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Old 07-15-2007, 08:15 AM #9
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i'm another rotator cuff surgery = RSD. i also was very, very active. actually, our stories sound a lot alike (except that i'm female ). i advise you to research as much as you can, talk to your wife - you should probably go to counseling so that you can have a mediator. maybe she should go to your dr. appointments with you so that the doc could tell her exactly what you are going thru. that is probably the best advice i could give because i was diagnosed 3 months ago and my husband STILL thinks i want attention. he refuses to read anything i give him and he won't look online.

empower yourself with knowledge. that is a surefire way to stay on top of things and help yourself cope.

shalom,
angie
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Old 07-15-2007, 10:01 AM #10
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Hi and welcome,
This is a great group. None of us want this or the attention or drugs, or anything else we have to put up with. I'm sorry your wife is acting that way. sometimes just the fear and lack of knowledge can cause someone to act in less than a stellar way. Speak to her and tell her how much it hurts you when she says these things. Just remember that we can not be held accountable for someone elses actions or words, only the way we respond. My husband went thru a period where he also said things that hurt. No we are not druggies nor are we lazy. I sat him down and told him that it needed to stop. He thought he was being funny and trying to make me laugh (dud). At one point, when he was going on about weight gain I looked at him and said I'm sorry I only have rsd, maybe with any luck I would develope cancer. He didn't understand what I meant, so I told him that at least with cancer, people understand, and the weight loss you have with it would make him happy. He has never said anything about it again. Sometimes it just takes making them realize that what they say hurts. Give it a try. He is now great about everything. we are all here for you. Keep us posted.
Mary
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