Hey mummy Jen ,

I agree with both Roz and Broken Wings.

You have bought some things which have to be thought about individually by the group members. Acceptance runs through something similar to a grief cycle. You have obviosuly worked through this, and are now at the point of questionning yourself and your attitudes towards doctors. I admire you for that and for dealing with the hard questions I assume that you are going to pose. To a degree this is a point that I have reached - which is why I am NORMAL but I'm just an RSD crip. Together.

As BW said the way things are said on here does indicate meaning, the same words can be arranged to either be positive or negative, to support someone, or to make them feel inadequate or pathetic. I am certain that getting RSD at 3 cannot have been easy and must have been horrible to cope with, I find it hard enough to deal with mine and I have only had it since teens.

However, many people have not reached the stage in the grief cycle that you have, they are still trying to get their old life back. which is a stage that must be gone through before acceptance and a sort of peace arrives mentally where you aren't HAPPY to have RSD, but you understand you have it, there is very little you can do to change the situation magically, and that life must continue. Many people on this forum have reached this point, and many more will not reach this point for a while longer and are not at a stage where any of the things you have suggested will help them, or will be positive for them.

What does a diagnosis matter? you say that you are on heavy narcotic therapy. Well, if the RSD is treated as something psychological then I fear that you wouldn't have your narcotics, instead you'd be given some diazipam and some haliperidol and told to come to therapy every week or go into a mental institution. Whereas RSD therapy involves (as you know) physio, pain medication, generally some for of psychological support (for dealing with this level of pain and to help people adapt and live with it and not jump off bridges). As you know there is a very large difference between these two treatments. Also, I guess that you have searched for a cure, made RSD your "job" almost - flying from place to place to try and find a cure, or a treatment, to discuss with therapists and specialists - this is something that I find, anyway, incredibly draining and incredibly RSD focused.

If you search these archives you can see the cookery thread we created (Liz? I think??), a hobby thread etc - the aim of this is to help people take up a hobby (an IHH thread), or think about cooking (even if they can't physically), or support them to develop outside interests - (my thread) in a way that optimises people mentally, by showing them they can manage things, whilst limiting the physical consequences. (there are more threads, just those were off the top of my head).

Whatever people say, an email is more than words, it automatically infers tone, it infers belittlement of others experiences, it suggests and it hurts some people. If you feel that you want to talk about motivation etc then I am perfectly happy to discuss it over PM - however, others are not at a stage when this is appropriate. If you are looking for support here then agressiveness will not help.

hope you are having a good day.

Frogga