It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-26-2005, 02:11 PM   #1
Newbie
(female)
 
Join Date: Feb 2005
Location: TEXAS
Posts: 4
Jakjr HB User
spouse of RSD victim

Hi I am new to this board. just wondering if there are any spouses etc who are out there with same feelings as me.
anger
depression
resentment{at disease}
loss of self
feeling guilty about being selfish
alienated
thanks
Jak

 
Old 02-26-2005, 05:23 PM   #2
Senior Veteran
(female)
 
Join Date: May 2002
Location: NY
Posts: 3,197
sharon1030 HB User
Smile Re: spouse of RSD victim

Hi Jak,

I wanted to welcome you to this board. I'm not a spouse so I can't help you there. I do want to say though that you have a very tough job in my opinion. I would think that all those emotions that you just listed are very normal for what you're going through. I say all the time that I think the job that you guys have as loved ones of RSDers is harder than ours, in a way. I have a very hard time when one of my loved ones is sick because there's nothing I can do to help them. I'm sorry you're having to deal with this. Hang in there!

Sharon

 
Sponsors Lightbulb
   
Old 02-26-2005, 06:49 PM   #3
Member
(female)
 
Join Date: Sep 2004
Location: South Carolina
Posts: 95
jo1234 HB User
Re: spouse of RSD victim

Welcome Jak:

First, I am so sorry that your spouse has RSD. Second, my heart goes out to you. I often think that being the spouse is so much harder.

I hope you don't mind me answering you, although I am the RSDer. I respect you so much for reaching out to learn more about the journey you are both embarking on. It must have been a hard step for you and I believe your doing this through love. My husband and I have shared the diagnosis, me screaming of the injustice, pushing him away and the melt down when I needed his strong arms for support. Our life has taken a 360 degree turn. I used to keep our home and children running right on schedule, kept 3 very successful pediatric surgeons where they should be at all times, was President of the PTO at the girls school, and we entertained every weekend. To a person who can only follow a one on one conversation and has anxiety attacks thinking about going out into a crowd. My DX devasted me, but it took a long time for me to realize how much it devasted my spouse. He made me listen to the story of RSD seen from his eyes. It wasn't any better than from mine.

We are better now. I've realized its not all about me. The pain eats at you all the time and knowing it won't end is the hardest. It's the courage of facing it together that will make the journey easier.

My thoughts and prayers are with you and your spouse. Although its a journey of pain, its no different than any other hard point of your lives. My thoughts and prayers are with you and your spouse.

LiZ

"Somebody's praying you through"

 
Old 02-26-2005, 08:15 PM   #4
Senior Member
 
Join Date: Jul 2004
Location: Portland, OR
Posts: 233
RSDtrinity HB User
Re: spouse of RSD victim

I myself am also an RSDer, but there are a few spouses on this board as well. I just thought i'd suggest a book because i've had my family read it as well to open the lines of communication a bit better than they were. It's called Living with RSDS and I don't think i'm allowed to post much more about it because of forum rules. But the book gives ideas for the sufferer and the families who have to suffer as well. I can only imagine how hard your job must be, seeing your loved one in pain 24/7 that you cannot fix. And knowing that we RSD people have mood swings and side effects from medications dosen't make anything any easier. Just do your best to be as honest as possible without hurting him/her and tell him/her how you feel at times. I'm sure if you catch them in a low pain moment they'll take the time to listen and understand what you are talking about, because i'm sure it's crossed their mind a million times already. RSD is a giant monster and is hard for everyone around us to deal with, which is why communication is so darn important. Just use low pain days to talk, as i'm sure you know, we don't listen much on those high pain days. Good luck with you - Jessica
Oh and just another thought, we feel those same exact feelings every single day of our life as well, because it's ruined our life and made us feel guilty for robbing our spouse of our "old" life.

 
Old 02-27-2005, 12:37 AM   #5
Veteran
(female)
 
Join Date: Sep 2004
Location: California
Posts: 370
Sunnycal HB User
Re: spouse of RSD victim

I do understand how you feel. RSD is a devastating diagnosis. It is not like cancer, which I have had, which can be treated and it is over. This is for life. I agree that it is so hard to see your spouse in pain and realize there is nothing you can do about it. (My husband has had RSD in both feet for 3 years, and multiple surgeries after an auto accident in 1992.) I, being a teacher, and a "fixer" tend to try to give suggestions. (Basically, I talk too much ) Sometimes he tells me he just wants to be alone--to "zone out" as he says, to try to distract himself from the pain. I need to give him that space and just let him be alone, when he wants to. It's all about being sensitive to each other.
However, since he has sleeping problems (sleeps 10-12 hours), gets up at noon and takes 2-3 hours to get going, I get frustrated because I don't get to see him and talk to him that much. I feel like sometimes I am moving in slow motion because he is. But he has told me that he wants me to feel free to go out and do things and not stay home because of him. So we do the things he can do, like go out to eat or to plays or movies, and I do other things with my friends. Sometimes it gets frustrating for both of us to know that he can only do one thing per day, but we both understand that that is the way it has to be. Or he will try not to do major things two days in a row. (By the way, to answer another thread, we don't see how he could work with RSD. There is no way to know how he will feel on a given day.)
I know that he is bitter that his life was taken away from him by that auto accident and all I can do is try to be there to support him and listen.
Sunny

 
Old 02-27-2005, 08:07 AM   #6
Newbie
(female)
 
Join Date: Feb 2005
Location: TEXAS
Posts: 4
Jakjr HB User
Re: spouse of RSD victim

Sunny Sharon Liz and Trinity
wow, I did not expect such a quick response. Thank you very much . Your words touch my heart and reading them DOES help. I have been feeling so very sad lately. It is great to talk to people living the life we are. I get frustrated with the way we are treated . When Lisa is out with her walker/cane people treat us poorly..I think handicap people {and I hate that word} are treated poorly. No respect. I want you to know I will add you to my prayers .Best wishes
Jak

 
Old 02-27-2005, 09:51 AM   #7
Senior Member
 
Join Date: Jul 2004
Location: Portland, OR
Posts: 233
RSDtrinity HB User
Re: spouse of RSD victim

I'm only 25 and the week after my spinal surgery for my SCS (last year so would have been 24) I had to go grocery shopping because there was no one else to do it for me. I went in with a doctors note asking if I could use the carts that they provide and an older woman scowled at me and said "why don't you stop your little game and leave the cart for someone who really needs it?" The only thing that I could do is laugh, because if she only knew she wouldn't have been such a b!^@#.... People are always going to be insensitive, and that goes doubly for us without deformaties. You look fine therefor you must be able to take an asprin like I do and be fine. If you had an amputated leg, well then everyone would understand, there's no leg to walk on, but for chronic pain there's no explanation. Those are the people that you learn very quickly to avoid because all they are are drains on you and your family. - Jessica

 
Old 02-27-2005, 12:23 PM   #8
Member
(female)
 
Join Date: Sep 2004
Location: South Carolina
Posts: 95
jo1234 HB User
Re: spouse of RSD victim

Jessica: You are so correct. RSD is a ghost disease.

Jak: How long have you and Lisa been living with RSD? Please believe me this is the best board to vent on. It is also the best board to receive support from.

LiZ
"Somebody's praying you through"

Last edited by jo1234; 02-27-2005 at 12:23 PM.

 
Old 02-27-2005, 03:08 PM   #9
Newbie
(female)
 
Join Date: Feb 2005
Location: TEXAS
Posts: 4
Jakjr HB User
Re: spouse of RSD victim

Hi
well, The diagnosis came a few months ago, but it has been about 12 years of misdiagnosis. In other words, she has had it without knowing .She is in stage 3.Today she lost control of her bladder for the first time .Very sad.Then her knees froze up. Tomorrow we pick up her new wheelchair. I pray more than ever and I was never "a good catholic" .why does everything seem so hopeless???!!

 
Old 02-27-2005, 04:42 PM   #10
Inactive
 
Join Date: Nov 2003
Location: Durango, Colorado
Posts: 1,447
Jewel2 HB User
Re: spouse of RSD victim

Hi Jak,
I, too, have RSD myself, but I'm also a caregiver to a daughter with nasty MS. So I live on both sides so to speak.

I don't have much time to type right now, but I wanted to welcome you and let you know that all of the emotions you listed are totally natural - plus more, unfortunately.

Feeling hopeless (and helpless) is very normal, especially in the first year or two of diagnosis. Usually, you will adapt to a new way of life once you work through all of these raw emotions in the beginning and educate yourself about what you are dealing with.

I'm not sure that I would have believed it if somebody said that to me when my daughter was first diagnosed, but 5 years later it is amazing how we have adjusted our perception of a 'normal' life and how we just deal with it. Yes, there are still emotionally charged moments of anger and shaking my fist in the air, but overall it is better.

I hope you find the help you need here. There are a bunch of great people that post on this forum.

Best wishes,
Julie

 
Old 02-27-2005, 06:18 PM   #11
Senior Veteran
(female)
 
Join Date: May 2002
Location: NY
Posts: 3,197
sharon1030 HB User
Smile Re: spouse of RSD victim

Hi Jak,

I hate that "h" word too .

Sunny,

How are you? Haven't seen you in a while. How is your husband doing? Any better with the sleeping? It's nice to see you. I'm glad you're still around.

Sharon

 
Old 02-27-2005, 06:57 PM   #12
Veteran
(female)
 
Join Date: Sep 2004
Location: California
Posts: 370
Sunnycal HB User
Re: spouse of RSD victim

Jak,
How horrible to go for 12 years and not know what was going on!! My husband's accident did not cause RSD until years later, which is atypical. (We think the full-blown part happened as a result of the doctor trying to kill the nerves with alcohol, but he had pain in the same spot for years.) My heart goes out to you as you try to adjust to all of these new developments. Are you familiar with the grief cycle as it applies to disability? Since I teach severely disabled students, I have learned about it. Denial and anger are some of the first stages, so it is completely normal to go through all this.
Sharon-
Thank you for the "re-welcome". Even though I haven't posted for awhile (too busy with work), I still read the boards every day. Yes, my husband is still having the sleeping problem. He decreased the methadone by two, but had to go back up one, because the pain was too intense. He is also trying Provigil, a stimulant usually used for narcolepsy. It worked for the first few days, but we don't see any difference now. Thank you for asking (my husband was amazed that you remembered--does the pump make a difference in your memory--as in, improved since you went off the oral meds?)
Sunny

 
Old 02-28-2005, 05:18 PM   #13
Senior Veteran
(female)
 
Join Date: May 2002
Location: NY
Posts: 3,197
sharon1030 HB User
Smile Re: spouse of RSD victim

Hi Sunny,

I don't know if my memory has been helped with the pump. I had a GREAT memory before all of this so I guess, even though it's not at it's best, it's not so bad because of where I started. Make sense? The pump has helped me with depression though because the oral meds made me very depressed and I didn't even know I was depressed until I became happy. It helps me so much. I wish it helped others as much as it does me. I've said this before, but in case you missed it, my doc puts in bupivacaine along with the morphine and it calms the sympathetic system so that the color and temp are much better and the sweating is so much better. I think the bupivacaine helps me even more than the morphine.

I'm sorry your husband still isn't sleeping even half-way normally. That's enough to get you in and of itself when you're not sleeping. I hope they can find something to help you guys.

Sharon

 
Old 02-28-2005, 10:51 PM   #14
Senior Member
 
Join Date: Jul 2004
Location: Portland, OR
Posts: 233
RSDtrinity HB User
Re: spouse of RSD victim

Boy I wish I could stop sweating!!!!! Geez what a nightmare... I can go thru two or three shirts a day to the point that they are dripping wet and can squeeze water out... YUCK!!!

 
Old 03-01-2005, 06:33 AM   #15
Member
(female)
 
Join Date: Sep 2004
Location: South Carolina
Posts: 95
jo1234 HB User
Re: spouse of RSD victim

[/FONT]Jak:

Twelve years!! Do you have a PMD? Now that you have a diagnosis you can move forward. There are lots of different treatments out there.

Sharon:

I've always thought of you as the historian on the board. You remember details about everybody.

LiZ

"Somebody's praying me through"

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Spouse concerns jc111 Relationship Health 2 09-04-2009 10:47 AM
Should one ever give up hope for stroke victim? cas1963 Stroke 7 10-17-2007 11:03 AM
Spouse Manic Cycle Longer & Much Worse; Need Insight, please bipolarbear Family & Friends of the Mentally Ill 5 01-15-2007 01:13 PM
Spouse Email Password ps37371 Relationship Health 25 06-15-2006 07:39 PM
OxyContin Claims another Victim NightSwan76 Addiction & Recovery 10 05-05-2006 08:11 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



painman2009 (56), Kev629 (41), K_Lana (32), kelly4004 (28), jewlz67 (27), sswallow (24), laurav (12), destinyevans (9), SloRian (9), mellow (9)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (670), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 03:42 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!