Hi all,


It is an interesting topic for sure but I think the term "burning itself out" may not be the best way to describe the process, even though that is the description the medicos use. It does sound a little as though we are not recognising the signficance of having CRPS if we are stating that it may just "burn itself out"
I think it is a term that really encompasses those who go onto remission or quite simply get better----and I do know a few who have done just that.
As for the path of destruction left behind, I agree that with some people (me for instance) there are such terrible deformities, contractures etc that it wouldn't matter if the pain went I would still be disabled but there are many people for whom pain is the main or the only symptom they have and if their CRPS 'BURNT OUT" they would have no deficit apart from the horrible memories

I know also that my doctor who whilst dealing in all pain management problems, specialises in CRPS, says that he has nobody who has CRPS over the age of 62 that still come to him for treament even though he has seen them for years.
He concludes that this must be an indication of either the disease has "burnt out" got better or the patients have developed other methods rather than conventional pain management techniques to manage their pain.
I did confront him about the rate of suicide and he says statistics say it is only marginally higher than that of the normal population.
I guess it can only be a good thing to always hold hope that "burn out" will be a part of OUR journey with this very destructive disease.
Hugs to all
Tayla

I have seen 3 people here over 62 that have it and I am thinking maybe they are at the age where they actually do just say, I'm not going back to Drs. because they don't do anything for me.

One went to the Mayo Clinic in Arizona and he said it was a waste of time and money. One I talked to, went through a surgery on his mouth for the RSD and I actually tried to talk him out of it and it made him worse, a lot worse.

The woman has an insurance business and sets her own hours to go in so she can stay home if she is in bad shape.

I know there are some out there over 62 with it. These 2 men as a matter of fact was in their 70's.

I know before Bill past I had to make him go see his Drs. He got the attitude of what's the use and I'm thinking these older people do.

Hope you all are having a good 4th.

Ada

Hi Ada,

I wasn't implying there was nobody over 62 with CRPS, I was quoting my Pain specialist who has looked after 100'S of CRPS patients over 18 years who mentioned that he has nobody anymore who comes to him for treatment who is over the age of 62.These people are the same who had been going to him for many years, seemingly happy with their treatment but he noticed the time frame between how often they came to him just got longer and longer until they came no more.
He is only recounting his experience but in conjunction with what was spoken about at the Berlin Conference he now thinks perhaps there maybe some validity to the comment that it may just "burn itself out" sometimes.
I would be ecstatic to think there is that possibilty for my future but will obviously take just what comes my way.
Cheers Tayla

Wow, that could mean that in a few years maybe it will go away. I'm hoping that is what happens to us when we get around that age. The other option isn't great lol...We will see...It will be interesting to find out.
Mary