[RSD ME]

Hi again. I know this sounds awful, and don't wan't to be a downer, but is anyone afraid that their rsd will end up killing them. I asked my pm dr if it could cause death and they said that they don't think it does directly, but knew of two patients they had who had rsd who ended up having heart problems from it. They didn't tell me if that killed them, and I was too afraid to ask any more questions, but got the feeling it contributed to their death somehow.
I worry that it might go internal and attack my heart. I get pain in my heart sometimes, but they think it's anxiety, but I get different answer from different doctors which adds to my anxiety. I don't mean to upset anyone by asking what they think, but hope maybe you may have some positive news to tell me about this subject. Thanks.

[AZ-Di]

Oh yeah, when I was first diagnosed I read something (don't rmemeber what) and I overreacted and thought it would eventually kill me.
Since then, if I understand correctly RSD/CRPS [I]can[I]open the door to other illness/disease because I guess it somehow compromises our immune system?
When I went for my 1st colonoscopy a few weeks ago I was so worried if during the proceedure I would have to have any polup(s) cut out it would spread the CRPS. That Dr. told me that RSD/CRPS would not kill me directly even if at times I wished it would but that colon cancer would. I guess he thought he was funny. Thankfully no pollups found and no cutting.
I think I worry more now about it spreading and reducing the Quality of life even more.

[Brambledog]

I agree with AZ-Di, it's more about the quality of life issue. CRPS cannot (?) kill you directly, and allegedly does not impact your lifespan - BUT (oh the size of that but...) it can affect other parts of your body to the extent that they develop other issues that might lead to an earlier death.

While we're talking about this thorny and cheerful topic there is the tag of CRPS being 'the suicide disease', simply because many sufferers are believed to eventually take their own life because they cannot deal with the condition any more and medical 'care' fails them completely. It doesn't show up on their death certificates as a factor.

To be honest it annoys me a lot. There would be a lot more knowledge and care taken of patients if when CRPS is a factor, it were actually named on the death certificate for sufferers. As far as I know, only a handful of cases have ever named CRPS as the cause of death. That just doesn't seem reasonable for a condition as cruel, complex and debilitating as this. I suspect doctors aren't willing to put it down because - same old story - they just don't understand it. Much easier to put something more common.

Yes, I'm scared too. I bet we all are in a small secret part of ourselves. I have had the heart spasms and pain too, it completely freaks you out. A GP at my surgery brushed it off as me over-reacting (the same one who told me that she advises all patients, including those with a known cardiac condition, to wait for at least 15 mins into chest pain before panicking and calling an ambulance ), but the ambulance men and my pain doc (who were appalled at the GP's advice ) thought it was far more likely to be the CRPS affecting my heart tissue. I mean FFS, that is never going to be a thing you can just shrug your shoulders about!

Personally, if I got to the point where I had multiple CRPS locations, terrible untreatable pain, and too many other health problems to be able to live my life with any enjoyment at all, and was a complete burden to my family (however nice they're were about it), I think I'd probably seek a way out. And I'd hope people would try to understand. I'm seeing a private therapist at the moment, and it came up in conversation last week - she had excruciating pain from wrist surgery for two years and had her whole life changed, so she understands what long-term pain can do to you. Talking about something so scary and taboo in a matter-of-fact way is incredibly healing. She didn't say I was wrong, or bad or crazy to have thought about it when things were really bad (about a year into it), she said it was human and understandable, and who wouldn't want to end their pain if it got too much to bear... Somehow talking about it made it seem even further off, and less likely.

It's a terrible, painful subject. But it's real too, and sometimes I think talking about this stuff and knowing that those fears are shared by others, helps you to deal with it all better. You bunch of nutters on here do more for my sanity, strength of will and ability to cope than any counsellor I've seen so far!

I'm scared it will kill me, but to be honest I'm more scared sometimes that it won't. That the pain will just get worse and worse and worse until I am nothing but suffering, and unable to deal with it. That terrifies me more than death I think.

A brave topic Renee. Hope my comments haven't offended or upset anyone.

Bram

[mommystime2]

I believe all the meds we take will destroy us sooner the crps will

[RSD ME]

Thanks everyone. I appeciate all of your opinions and feel better that I'm not the only one with this fear, though I wish none of us had this to fear in the first place. I am afraid this will kill me directly or indirectly whether by attacking my heart, or going internal, or by all the meds I take.
And I also sometimes worry more about living with constant long term pain too. Sometimes I think death would be more merciful than living like that. And though I am a religious person, and God forgive me, but I sometimes think on my really bad pain days, that not living anymore would be more better than going on with this pain that may get to the point that even the meds won't work. Then what? If it weren't for the pain I would cause my family, I may think about it if it got really bad. But I couldn't do that to my son and husband. And I don't want to leave them. It's just that sometimes the pain is so horrible and relentless and the meds make me want to puke all the time, that I just want the pain to go away. I don't mean to offend anyone either, and don't plan on doing anything like that, I just needed to talk. It helps me more to talk to you guys than my own therapists sometimes. I told my therapist once that I thought this rsd was going to kill me someday and he said nothing. It seems to me that even my other drs try to avoid the topic, probably because they just don't know enough about it, but I can see it in their eyes that I'm in trouble. Anyway, sorry again to sound like a downer, I just needed to ask and am so grateful for all of your support and comments. I know you all understand better than any dr could because you're going through it too. Thanks again and hope you have as pain free as possible day today.

[Nanc]

Bram is right, this is a brave topic Renee and one I am sure we have all thought of. After having this for so long, I have gotten past the fear of it killing me. I am more concerned about suffering more from it...like more internally. I have so much pain (like many of us do) in all four extremities, face and trunk, and there is no control over it. Drs can't control or treat it because I can't take much of anything. I have a headache every single day, that I am used to. I also have migraines often, allergic to all migraine meds I have tried. I do not worry about medication destroying me because I cannot tolerate anything

What also concerns me is the other conditions that I am developing as a result of RSD/CRPS. Just recently diagnosed with interstitial cystitis and pelvic floor dysfunction (have to start PT for the PFD). My quality of life sucks and what gets me through every day is my husband, so thankful for him.

Nanc

[RSD ME]

Thanks Nanc and thanks Bram. And thanks to everyone. I'm sorry you're all suffering so much.I worry about the suffering internal spread more than it killing me too I think. The thought of having to live with horrible pain is terrifying. I take alot of meds that help keep pain to a minium, but they make me like a zombie and have harsh side affects on my body and mind. And I worry that someday they won't work anymore and will need to have them incresase.
I don't think my stomach can tolerate any more meds. So I don't knwo what I would do then. I hope I don't get to that point. and the meds I worry waht the meds are doing to my body too. I've gotten other things from my weakend immune system from rsd. i.e. fibromyalgia, tooth abcesses, I don't heal quicky and get sick alot even the common cold takes me forever to get over and know I have oteopenia, in my right hip and it hurts alot. sometimes especailly in the mornign I can't move my right leg because my hip hurts so much. I have to lift my leg up to get out of bed. And my feet are swelling and other hand andmy left foot is getting shiny now. It's becoming harder to walk with my legs and feet. And it's hard tohold a cane because my hands don't grip well and hurt too. anyway, i have to check into this interstitial cystisis. maybe that' s why my stomach hurts so much. Well, I hoep you feel betterwith you health problems Nanc and Bram and everyone else suffering from this disease.And thank for being so understanding about my question. I was afraid to ask, and apperciate your kindines and not getting upset with me for asking. Take care.

Exactly the opposite I wish it would, the thought of spending another 20 - 30 years living with this and the knowledge that the slightest knock/traune could cause it to spread and spread until it's full body is a lot more frightening than the relief of death

[RSD ME]

I hate to say it, but I think I agree. I would rather not live the next twenty to thirty years with this pain that could get worse or spread until it's full body. I think that's alot more scary than death too. Though of course I would miss my son and husband terribly. I guess only time will tell.

[Brambledog]

Hope my comments in here about euthanasia don't cause any offence or upset. I have deliberately omitted any reference to religious belief because I don't want to upset anyone.
...

I think when you get down to it, it's all about choice. I know euthanasia is a very controversial topic, and as soon as its mentioned all the pro-life folk start banging their drums and claiming its like some sort of ethnic cleansing, but of the sick and the old...but surely it is actually a choice for a person themselves to make? I would never advocate suicide as a solution for the mentally ill or lonely people, but surely if someone truly does not want to live, for a sound medical reason, and (very importantly) there is no realistic hope of improvement, then why should society and the medical community force them to live on? That is of itself an enormous cruelty. The court cases in recent years, where those with terrible illness have begged to be allowed to die and been refused just chilled me to the bone. Where is the compassion and humanity in that?

I saw a documentary last year about geriatric care that frightened me witless as well, and made me wonder where the sanity is in our health system. Wards filled with the very old, too ill to be at home, many with no family left, no visitors, and no hope. So many begged to be allowed to die. Nursing care was so variable, and while some were looked after well, other starved because nurses didn't have time to feed them, or lay in filth. It was something from a nightmare, in our own healthcare system. I'm not for one second advocating a doctor with a syringe going around clearing geriatric wards, but again I think common sense and compassion should be used, and if someone begs for death, and really has so little worth living for (in their own eyes and those of a normal human being), and if life itself just causes them suffering now, then why is it so unthinkable?

I have experience of a loved one dying in hospital at the end of their life. I was there at the end, held their hand, and felt overwhelming relief that it was all over for them. But I cursed the healthcare system that would watch that happen inevitably over a long period, rather than assist in a clean and dignified end to suffering.

As I said in my previous post, I am often more scared of a future in pain that cannot be treated than I am of death itself. And as a human being, I do truly believe that someone with a long-term incurable condition causing constant terrible pain and disability should, when and if they reach that point, have the right to ask for release from a life no longer worthy of the name. And that death should be able to be in their own country, with medical care and supervision, with loved ones holding your hand, and be painless and gentle. That would be the greatest gift any person could give me at that point.

I don't believe it is an easy way out at all, and I don't think there is a danger of it being used carelessly. We all know how precious life is, and I think that to even get to that point would be a terribly long, considered and desperate journey. I always believed in euthanasia if handled with compassion and care, and since having CRPS I have become even more convinced. I truly believe that the Hippocratic oath has been twisted by modern medicine over the years: 'First do no harm'. Well, define harm for me then. Is deliberately condemning someone to torture not 'harm'? Is forcing someone to seek their own, inevitably more untidy, death not 'harm'? If some desperate soul asks for something so final, why cannot two or more independent doctors look at their case and make the decision that actually in their case it would be a kindness.... I think the Hippocratic oath is about doctors who are afraid to be the first to stick their head above the parapet and say that they agree with their patient, and would be willing to actually publicly take responsibility for the procedure. I think we all suspect that there are a few who do help a patient to that final journey, but surely they could be regulated and licensed to do so, with due cause and consideration?

I love my life, and for me the scales are firmly on the side of living, but I can see a time one day, hopefully a long way off, where the pain will weight things the other way. I live in hope now that the law will be changed and someone in authority will see past their own fears and prejudices and be willing to stand up for all those who actually have a darn good reason for asking for the unthinkable. I hope to goodness it happens in time for me.

As I said before, I hope I haven't upset anyone or caused offence. This is just something I passionately believe in, and this thread topic has given me somewhere to say it (thanks Renee).

Hugs to everyone. Goodness knows we need them!

Bram.