Question.. and taking a "mini break" :0)
 

Desi,

There are cases in which the RSD goes into remission for unknown reasons, without any treatment. It is not typical though!

I know what you mean about the hands needing a break! :eek: Come back soon and take care of yourself. :hug:

desi,
I'm sorry you are hurting so bad. I'm sending you very gentle hugs, and a super soft pair of gloves that will not touch your skin. Take as long as you need. Keep reading, and we will be talking to you. don't worry about replying. Please take care.
Mary

Hi Desi,
 

My RSD is pretty much in remission from blocks and Triggerpoint injections. Yesterday my right arm and hand was showing the RSD due to the weather here. I have noticed after it rains and when it starts drying up from it is when I notice mine.

I don't know about burning itself out though. I never heard of that one but I guess anything is possible. I know that before I started getting blocks mine showed no signs whatever of slowing down.

Hope you feel better soon. You have been such a great asset to the forum.

Ada

Hi Desi...Sorry you're having such a bad time of it. As regards the rsd "burning itself out", I was told the same thing by my ortho doctor about a year ago. So, I went home and got online to the rsd websites and did some research. Turns out there is no such thing though there are still doctors out there who tell this to their patients. As others have mentioned, there is the possibility of remission and I hope that for you. Do as much research as you can when doctors say things that don't sound right to you. I know my research saved me from having a sympathectomy done even when doctors were telling me it was the best thing for me. Coming here and asking questions is also great because alot of us have already had the same questions and gotten the answers. Hope this helps and take good care of yourself. Jeannie

Burning out
 

Hi Desi,
we have not met yet over the net (sorry for the poor prose). I visit infrequently as I can only sit for short periods. I have only ever heard of burning out by orthopeadic surgeons - noone who really understands the condition.
Many of these bods - not all - practice in the dark ages of alchemy. I think they still believe they can turn a sows ear into a bar of gold......they believe they are better than the alchemists of old.......they don't even have to start with a metal. I have probably upset any genuine Orthopaedic docs out there - I am sorry but you fellows are too hard to find.
Sounds really sinical but certain medical fields have a consensus and those in orthopaedic circles are maverics if they believe CRPS is not just in the mind.
We know better.
Enjoy your break but may I suggest ever so respectfully that you try to keep using the CRPS affected part, ever so gently and carefully.
Remission that is unexplained is the only "process" I am aware of being legitimately documented but is VERY infrequent.
Some treatments will give relief to one individual and not the other.

If you are involved with an insurance situation, too much rest will be held against you also.

I send you gentle thoughts and my best hopes for remission - it does happen.
Regards
Auberon

Howdy,

It seems that in the Pain Management Conference in Berlin that finished on June 15th there was much active discussion about CRPS 'BURNING ITSELF OUT" There is apparently sufficient data to confidently say that it does happen--
On questioning my specialist it is "when" and not "if".
Of course I am very interested to read the conference transcript before I get excited.
Take care and hugs
Tayla

Me again,
 

I was just wondering if anyone that's been on the board ever had it to burn itself out. I haven't seen anyone around here who have had it to burnout.

I don't think mine would have ever burn out. Once it was diagnosed I found Drs. and Anesteologist to go after it aggressively but I was in so much pain for over 6 years I was suicidal from it.

I don't see many people ever say that they were suicidal from the pain but I do know we have lost several here in the group because of it.

I know around 10 people in my area with it and not one of them have had it to burnout.

I would not only want to see the transcript, I would want to meet some of the people it happened to.

Ada

Hi Ada, I'm with you on this one. Show me someone who has had their RSD "burn out. " As they say, the proof is in the pudding. As far as the transcripts go, I personally have found so many contradictions in the studys I have read that it's hard to believe any of them any more. But, if I could meet a real live person who could prove their RSD burned out, maybe then I would believe. Jeannie

Okay, let's face it ... no one really knows anything about rsd! there are such conflicting reports and articles and i believe they are all theory. this goes from how it begins and why, to how to diagnose it, to what works as treatments and meds, to how and if it progresses and travels, and if it burns out .... I would trust a dcotor more who just said ... we don't know, it is all a guess. we the patients know the most and thank God we share it.
joan

I do know a few people with CRPS who have got better, they have dropped away from going to the physio, hydrotherapy etc and on making enquiries they are better.
I think the problem is that not too many people will continue contributing to these support groups once they consider themselves as better or in remission.
Whether it is because it has "burnt itself out" or they are in remission or cured I am not sure but I am looking forward to reading the notes from this Berlin conference.
Tayla:hug:

I have heard all about this as well. One of my PM drs tried to reassure me (and my family) that RSD doesn't last forever. When asked why, they said how many people do you know above 60 who have RSD (ok. I know several, but I know far more people in their 30s and 40s). But, whether this is due to the suicide factor, or whether the RSD is diagnosed as a neuropathy of some kind and thus never comes under the RSD umbrella. For instance, RSD can apparently begin after a stroke - but it is known as something like post stroke syndrome or something. So maybe it doesn't burn out - the Drs just call it something else!

Interesting....

Love

Frogga xxxxxxxxx

PS - I know quite a few people who have burned out RSD and are now fine.

I've never known anybody whose RSD "burned out." However, I know many, many people who were treated and went into remission. The doctors and experts I have seen all agreed that RSD does not just go away on its own, it requires treatment to do so.

I'm sorry, but I have to believe that even if the RSD did just go away one day without treatment, it would leave behind it quite a path of destruction. Even with years of physical therapy, when my pain and vasomotor/sudomotor changes finally went into remission, it left behind damaged blood vessels, muscles, joints and bone. Imagine if a person had gone through no treatment and therapy and just waited for the RSD to magically disappear someday! No matter if the pain "burned itself out," the physical result would be absolutely devastating.

I do realize that nobody is advocating for a lack of treatment...the paragraph above is just an example of the dangers of this belief. If, for instance, a doctor believed that RSD necessitated no treatment and would go away on its own, that could be a very dangerous assumption.

I guess what I'm trying to say is that it hardly matters whether RSD goes away on its own...it needs to be treated regardless of whether or not it burns itself out.

-Betsy

There is a difference between burnout and remission isn't there?
 

Mine is in remission but only due to years of treatment. Mine would have never just burnout. I don't know of anyones who has as I said.

Like Betsy said, even if it did so call burnout what kind of damage would it leave behind without some kind of treatment/

Ada

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":confused:
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.:confused:
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:grouphug:

Hi 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.:confused:
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
:grouphug: