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