Almost everyone that has had the disorder for any length of time has been through the ringer... I'm not trying to lessen Dubious' experience at all, just noting that this is the reality of RSD. Unpleasant procedures and meds, that have to be experimented with to determine which gives (or does not give) the highest quality of life. And at different time periods, based on mental health, burnout, increased or decreased coping mechanisms, living and job situations, will dictate which course to follow at that particular time. There just is no one size fits all. The SCS scares me, but some have had great success with it.

I think Lit Love is on the money with the comments that all of the experimentation and unpleasant stuff is life with CRPS. That is simply the reality of living with this condition in anything other than a mild form for any length of time. It's also true that at different periods in the course of the condition, different management strategies will be needed.

From my research, the current view amongst the leading CRPS researchers and clinicians in relation to sympathetic blocks is exactly as Emily's specialist described it to her. The view seems to be very much turning away from doing endless repeated blocks to doing only 1-3 and largely using it as a diagnostic tool. It's not used as a diagnostic tool to determine how the pain is mediated though, it is used as a diagnostic tool to determine whether CRPS is present or not. The general body of opinion seems to be that if a patient receives any pain or other symptom relief (other than for the period of a few hours whilst the local anaesthetic in the block is working) then this is a 'bonus' rather than an expected outcome.

I wouldn't be surprised to see treatment guidance in the future placing far less emphasis on carrying out multiple sympathetic blocks. I suspect that they will increasingly be seen to have minimal value as a CRPS 'treatment'. Of course there will always be individuals for whom multiple blocks will be a helpful part of longer term treatment but for the typical majority, I think it will be different.

In much the same way, it has become much clearer that as more work has been done using SCS with larger numbers of patients, there are typical CRPS patients who are likely to get benefit and patients who won't. The patients for whom they are generally most effective are those where their symptoms are confined to one limb. Patients with pain in multiple limbs are much less suitable for SCS implantation because they typically have much poorer outcomes. As increased information becomes available, it at least allows everyone to make more informed choices.

I guess my reply to the last several posts would be in agreement that there is not one way or even several ways to address CRPS. Each of us has our own road we have traveled, by trial and error or blind luck and no controlled study, RCT or anyone else's opinion will change what we have already empirically found to individually work for us!

While I don't at all agree with neurochic that SGB's will run their course and be shelved (there are still many of us with SMP that respond therapeutically in addition to diagnostically), but I will submit that there are certainly those who simply are SGB failures and repeat procedures should not occur. None of us are the same!

And Litlove, there is nothing you can say that changes my amazingly positive experiences (as much as I hate the SGB process, it worked for me). Emily, thanks for the kind wishes...I have been dealing with this since early 2008 and am truly thankfull after reading about others worse off than me. I comparatively consider myself fortunate even though I have lost much (as have we all).

I guess my summation is that I am not at all impressed with medical science or professional talking heads (I understand, having been educated as such and participated in both the research side and medlegal process) since CRPS research is administered by no one who has ever experienced what we have been through yet the "experts" will tell us what we all need or can have! Reminds me of managed care/work comp/national health care...sorry, I can't go there....

Dubious, I think you misunderstood my post. I even thanked you for the post the other day. I was really responding to the OP thinking your case was extraordinary in what you've had to deal with. And well, of course it has been, but it's typical for an RSD patient.

Unless I read it wrong....I think we are agreeing! Aren't we???

Dubious

You have very much misunderstood what I was saying. I didn't say that SGBs would run their course and be 'shelved'. I was very careful in the language I used exactly so that I didn't say that. I was, in fact, making the point that there will always be people for whom sympathetic blocks are an effective therapeutic option. I was also careful to recognise that people are all different as are their symptom patterns. I want to make sure that what I actually said is correctly represented.

You clearly have a very strong view about the medical profession and the current vogue for evidence based medicine so it is not something I will comment on. I would only comment that taking internet based medical advice from other people with a diagnosis that purports to be the same as ones' own is certainly not risk free, information offered in good faith can be completely incorrect nor is it necessarily going to give any better an outcome. Many of us share professional knowledge of the healthcare industries and/or medico-legal fields but although we don't share your views, ours are still just as valid.

NC,

Not sure I disagree with anything you just said! You re-stated my point...you just said it better!

Dubious, I thought we were in agreement, the above just confused me.

I get in such a hurry sometimes, I post something and hastly walk away, read it later and confuse myself!