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 10-25-2013, 07:36 PM #21
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I am not one to encourage loss of life. I do believe that sometimes it is the lesser of two evils though. Like when someone is terminally ill and in pain or someone who can't afford a child they are carrying. I do believe that if there is anyway possible to preserve life that it should be done. But only if it doesn't cause pain and misery to that life. I don't think one is weak if they choose to prevent someone to not live in misery. I think it takes alot more strength to decide to stop a life from suffering than letting it continue in misery. And I don't think it's an wasy way out either. It's probably the hardest thing anyone would have to decide to do. But I do believe that everything that can possibly be done to preserve life should be done before a decision to end it is made. Because once that decision is made, it's forever. And it's something that the ones that are still living will have to live with everyday of their lives. It's certainly not something to take lightly. I undestand everyone's views, even though we don't agree on each others. I don't know if what I think is the right way to think. It's just how I feel with the experiences I've had in my life with my family and friends. I said I was offended, but I'm really not. It is a delicate subject and you are just as entitled to your beliefs as everyone else. I think its great that you are so positive about life. I guess I've seen so much bad, that maybe it's jaded me. I used to be like you, but have seen things that people have done that have made me very cynical of this world. Seeing the bad in people made me change my views on life. I still believe in a higher power and hope He understands my views. And if I'm wrong, I hope He forgives me. I've talked to my Priest many times about these topics. It's not an easy subject and I don't know how we got on it. If it was me who started it, I am sorry. I just wanted to talk about rsd. I'm glad we can all express our feelings and not judge though. I think we all learn something from each others opinions. That is definitely a good thing and I am glad for all of your points of view.

Last edited by RSD ME; 10-25-2013 at 08:07 PM.
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Old 10-25-2013, 08:39 PM #22
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I think at the end of the day what we all want is freedom. Freedom to think, believe, live or die in the way we chose. The freedom to make our own choices and be uniquely us. And bonus if we could learn to celebrate our differences.

I’d be lying if I didn’t say that I’ve had moments along this journey called CRPS when I thought “I can’t take this another minute” and the idea of sucking on the end of a Gun looked appealing. Yes, I’ve had some very dark moments with this condition. But you see, being who I am, I HAD to think that all the way through; right through to the part when my children or husband either got the news or found me, or I screwed it up and was left worse off. So rather than check out, I remain checked in fighting through my days.

I too have researched if CRPS will kill me, and from what I understand there will be something derived from the disease that will eventually end my life. This is of course assuming something else like cancer, car accident, etc. doesn’t get to me first. Either way this body of mine wasn’t made to last forever (thank goodness), but if I can manage to get my kids grown first, that would be ideal. I don’t fear death. We’re all going at some point and we all go alone. Just my two cents.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 10-26-2013, 05:10 AM #23
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Originally Posted by RSD RENEE View Post
I am not one to encourage loss of life. I do believe that sometimes it is the lesser of two evils though. Like when someone is terminally ill and in pain or someone who can't afford a child they are carrying. I do believe that if there is anyway possible to preserve life that it should be done. But only if it doesn't cause pain and misery to that life. I don't think one is weak if they choose to prevent someone to not live in misery. I think it takes alot more strength to decide to stop a life from suffering than letting it continue in misery. And I don't think it's an wasy way out either. It's probably the hardest thing anyone would have to decide to do. But I do believe that everything that can possibly be done to preserve life should be done before a decision to end it is made. Because once that decision is made, it's forever. And it's something that the ones that are still living will have to live with everyday of their lives. It's certainly not something to take lightly. I undestand everyone's views, even though we don't agree on each others. I don't know if what I think is the right way to think. It's just how I feel with the experiences I've had in my life with my family and friends. I said I was offended, but I'm really not. It is a delicate subject and you are just as entitled to your beliefs as everyone else. I think its great that you are so positive about life. I guess I've seen so much bad, that maybe it's jaded me. I used to be like you, but have seen things that people have done that have made me very cynical of this world. Seeing the bad in people made me change my views on life. I still believe in a higher power and hope He understands my views. And if I'm wrong, I hope He forgives me. I've talked to my Priest many times about these topics. It's not an easy subject and I don't know how we got on it. If it was me who started it, I am sorry. I just wanted to talk about rsd. I'm glad we can all express our feelings and not judge though. I think we all learn something from each others opinions. That is definitely a good thing and I am glad for all of your points of view.
Very well put Renee.

Please don't anyone start apologising for their comments though! This is, for me, a really helpful and interesting discussion, and so far I think we have all trodden a very careful line with each other. I think we all know we have slightly different views - it would be boring if we all thought the same...but we know, I think, that we all respect each other's right to have those views. The is the essence and purpose of a debate - we each get to give our view, and talk about each other's arguments. But it's not personal, and I'm not going to dislike anyone just because they think something different.

Can we all sign up to that belief and just carry on with this discussion? I'm finding the free flow of thought here a really thought-provoking and healing thing. Knowing that you have all thought about this too makes it seem a lot less scary. Monsters in the shadows are always scary - monsters in daylight are far less so....

I know some earlier comments have been deleted or edited, so please bear that in mind when reading what was a response to something that has now gone!

Bram
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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Old 10-26-2013, 07:43 AM #24
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I deleted some responses yesterday about my pro choice views on the right to die with dignity and terminating pregnancies before I realized that Bram had commented on them. I'm sorry about that Bram. I just want everyone to know that Bram was responding to my views on pro choice. And though I said at first that I was offended by some of the comments made about easy way outs and lack of respect for life, I want to say again that I'm not. What I meant to say is that I just simply don't agree. I took out those texts yesterday because I didn't want this thread to be an argument about prolife vs prochoice. I want to focus on rsd. But maybe I should have left them in. It seems to me that unfortunately the positions that we are in may make some of us contemplate this topic someday. I hope it doesn't but if I'm to be honest about it and the pain gets to be more than I can stand, the thought may cross mind. I don't mind continuing this topic as long as everyone else is okay with it. I do respect everyone's views and am not here to judge, but to learn as much as I can about how to deal with this disease. I don't want to offend anyone either. We are under enough stress as it is. PS - Bram, I put my texts from yesterday back in, but worded them a little differently because I couldn't remember exactly what I said, so if you want to remove your thanks to them, I will understand.

Last edited by RSD ME; 10-26-2013 at 08:17 AM.
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Old 10-26-2013, 09:18 AM #25
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Don't fret about it Renee I haven't been upset by anything on this thread, far from it. I think reliable debate and discussion is perfectly possible, even about the most difficult topics, as long as everyone respects each other and doesn't take personal offence...

Hope you have a good day, I know you're having a tough time right now, but don't worry about how we're feeling about something you wrote - you are clearly a good person, and what you think doesn't change that

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 10-26-2013, 04:35 PM #26
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I'm not offended by this topic at all. I think discussions are healthy even if the topic is controversial.
We DO need to lift each other up and much as we can. Sometimes that needs to be in the form of validating each others feelings.
Heaven (oops) knows that others in our lives without this disease tell us how we should or should not feel.
I for one agree with Bram & Renee that sanctity of life is important, however, IF or when it got that bad for me I would want the choice! Even animals get treated humanely.
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Old 10-26-2013, 09:04 PM #27
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It's amazing more people claim to have seen aliens than god and when a jehovahs witness said to me you can't prove god doesn't exist she was left speechless when i replied and you can't prove aliens don't wether there is a divine being or we are some sort of badly thought out failed alien experimentis irrelevant.
No one except possibly my MP can imagine the pain we live in and even he doesn't understand the effects of all the other symtoms we live with.
There have been 40478 trials looking for a cre for cancer and they haven't found one for CRPS that figure is 84 so there is no chance of a cure in my lifetime and probably not in this centuary.
I have been badly hurt had the condition made worse in 4 Hospitals one as the result of probably the second or third ranked specialist in the UK. Been treated by or spoken fave to face with 7 of according to him only 15 specialists in the whole country and realised everyone of them is 20 years behind the rest of the world. The total ignorance of even our best and the fact that any hospital s morelikey to make things worse than better lead e to amke a living will banning any emergency treatment even in life threatening situations. Being one f the 7 & 8% whose wounds may never heal something which might put a normal person in hospital could kill me
some of you talk about the positive impact but what about the negative, I've reduced my wife to tears so many times over te last 4 years I hate myself but despite trying to push her out she has refused to go even though she says she doesn't know what I'm capable anymore. My eldest grandaughter was for a long time to afraid to stay in the house alone with me and the other 2 are to scared to come and stay anymore.
it's spread twice and we all know it could go full body.after my first attempt my wife made me promise to never try again but after livng with this for a year she agreed that if it spreads to the other hand so I can nolonger go to the toilet on my own I can take my own life. I don't beleive in assisted, sorry no one should have to live with having tken anothers life and if they volunteer to take a strangers life most definitley should be barred, I have the pills ready and it will happen when she's away from home. Mst recently I have been wishing it would because I am geetig more and more fed up with having to fight for everything
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Old 10-27-2013, 12:03 AM #28
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I don't know what the right answer is so please don't go by what I'm saying. It's just my opinion. I think it's a very personal decision that everyone should make on their own. I do know that the saying "don't judge me until you've walked a mile in my shoes" has applied to my life on more than one occasion. There were people I've judged in the past for doing things that I said I would never do, only to find myself in their position later in my life making the same decisions they made. Then I understood why they did what they did and tried to stop judging after that. I never thought I would even consider the topic we are talking about here until I got rsd, but the pain is so bad sometimes, like right now that it's keeping me up in the middle of the night. I don't know how much longer I can take it. It's horrible and terrifies me. Yes, it also scares me to think of my afterlife. I want to believe there's a heaven and that I will be able to go there someday to see my loved ones who have since past. I don't want to compromise that either, but I also believe God is good and merciful and that I hope He would understand and forgive me if I made a decision that would end my suffering. I don't want to leave my loved ones here on earth either though. The thought of having my son and husband live with fact that I did something like that makes me not want to end my suffering. Because then they would suffer the rest of their lives. I'm trying to endure the pain more for their sakes, then for mine. But I don't know how much more pain I can take. I hope we never get to that point and that a cure is found. Maybe a miracle will happen. Maybe then we won't have to worry about making that decision. I just don't know. Right now I'm just trying to take it a day at a time, until I may have to walk that final mile with this disease. From my past experiences, I suppose that only then I will truly know what decision I will ultimately end up making for myself.

Last edited by RSD ME; 10-27-2013 at 12:28 AM.
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Old 10-27-2013, 05:06 AM #29
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Oh Renee...we all carry so much guilt, don't we? We feel so responsible for everything, even the things out of our control

The despair at times like that - middle of the night and everyone else in the world seems to be asleep without the dreadful pain and fear - is overwhelming. I hooe you are feeling a little better now and more hopeful

No one can blame another for their thoughts, and I truly believe that at the ultimate lowest point in life, when all hope has gone, someone making that ultimate decision will not have done so lightly. And their family need to know that.

Earlier this year, after I had that heart episode and felt so appalling for a couple of days, there was a point where I truly thought I was close to it taking me. I did a voice recording for my family, and it was the most heart-wrenching thing I've ever done, really thinking about what I could say, how to express things you can't even bear to think about. It was truly awful, BUT a really good experience too in a funny way, because even in the depths of fear and despair, it made me think about all the important, amazing things I still wanted to be see, all the people I wanted to be around, and how much I didn't want it to happen.

If I ever get to the point of considering suicide, my life would be bleak and feel hopeless, but I would do a recording again, and I think I would know from that experience whether the scales were still up or down for me. For a rational person, I think that is a true test. No one doubts that we love our families, but if life itself becomes so dreadful for us that we feel we have no other choice than to say goodbye, then that is our decision alone to make. And at least the people who matter would know our thoughts, and not forever wonder.

A famous somebody once wrote that we are born alone, and we die alone. I think that's true in a way. When my pain gets really REALLY bad, I cannot even hear another voice, or respond, or be aware of anything except what my body is screaming at me. It's a terrible isolation. I can sort of see how in that final moment, you might not be able to think of anything except ending the pain.

If I heard of any long-term pain patient ending their life, I would just be terribly sad for them that they had suffered so much that they felt they had no other choice. I would be sad for their family and friends too, but I would hope that they could in time understand why it had happened.

I take responsibility for my actions, whatever they are. It's all you can do.

Have a decent day everyone, and thank you all for this discussion, and letting people speak freely. You're all fab and I feel lucky to kind of know you

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 10-27-2013, 10:23 AM #30
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Quote:
Originally Posted by Kevscar View Post
It's amazing more people claim to have seen aliens than god and when a jehovahs witness said to me you can't prove god doesn't exist she was left speechless when i replied and you can't prove aliens don't wether there is a divine being or we are some sort of badly thought out failed alien experimentis irrelevant.
No one except possibly my MP can imagine the pain we live in and even he doesn't understand the effects of all the other symtoms we live with.
There have been 40478 trials looking for a cre for cancer and they haven't found one for CRPS that figure is 84 so there is no chance of a cure in my lifetime and probably not in this centuary.
I have been badly hurt had the condition made worse in 4 Hospitals one as the result of probably the second or third ranked specialist in the UK. Been treated by or spoken fave to face with 7 of according to him only 15 specialists in the whole country and realised everyone of them is 20 years behind the rest of the world. The total ignorance of even our best and the fact that any hospital s morelikey to make things worse than better lead e to amke a living will banning any emergency treatment even in life threatening situations. Being one f the 7 & 8% whose wounds may never heal something which might put a normal person in hospital could kill me
some of you talk about the positive impact but what about the negative, I've reduced my wife to tears so many times over te last 4 years I hate myself but despite trying to push her out she has refused to go even though she says she doesn't know what I'm capable anymore. My eldest grandaughter was for a long time to afraid to stay in the house alone with me and the other 2 are to scared to come and stay anymore.
it's spread twice and we all know it could go full body.after my first attempt my wife made me promise to never try again but after livng with this for a year she agreed that if it spreads to the other hand so I can nolonger go to the toilet on my own I can take my own life. I don't beleive in assisted, sorry no one should have to live with having tken anothers life and if they volunteer to take a strangers life most definitley should be barred, I have the pills ready and it will happen when she's away from home. Mst recently I have been wishing it would because I am geetig more and more fed up with having to fight for everything
Hi Keyscar, I'm sorry you're in so much pain that you've gotten this far to making a decision like you were talking about. I hope that somehow your pain does subside so you don't have to consider that. Like I've said before, I don't know what the right answer is, but I do understand what your saying because I've felt the same way at times. Like earlier this morning. I was up until 4:30 in the morning in horrible pain that went right up to my face because of my tooth hurting now. I had the heating pad on my face to try to help because I couldn't take anymore pain meds at the time. But like I said before I don't know what I will do when or if it gets to that point that I don't think I can take the pain anymore. And I don't want to influence anyone, because I just don't know what the right answer is. I hope I will know what it is for me when or if the time comes. But I also keep hoping that time will never come for any of us. Hope and my family are all I have right now to hold onto to keep me going. I hope again you feel better and thanks for sharing your thoughts. My thoughts are with you too.
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