Hey,

This is hard one.

Mommy Jen - I can see to a point where you are coming from. However, I don't feel you phrased it in an appropriate manner. If what you mean is that it is important to try and keep living in the "real" world as well as the RSD world then I understand you. HOWEVER, I personally believe it is very important to have support from others who know what you are going through. I cannot think of a single person on this board who feels as you express. I have met one person like that with RSD (not from this board) and her symptoms were far more psychological than physiological - but it was shown by her and her doctors that she had conversion (went in to a mental unit and was walking within 2 days just through "normalisation" instead of physio etc.) However, this is very rare.

I developed RSD when I was 16. It is horrible to live with. I am now 21 and at uni. However, my "normal" mates have no idea what RSD is, they don't know what to say other than "poor you" which is something that I don't believe in. At the moment I am thinking of having a DBS inserted - most of my mates don't even understand what it would do - they are all for it if I want to do it, but they cannot understand the fear involved with messing with RSD and surgery. PERSONALLY I use this message board to enable me to be "more" normal. By talking to others with RSD I get the support I need and am then able to rarely talk about the RSD with my friends - who don't understand anyway (if this makes sense?). As you talk to people on here you get to know them and develop friendships - based on understanding and caring, empathy and support.

If I may be so bold as to ask, but if you believe support groups are so wrong.. then why are you here? If you were to look through the archives of this site then you would discover that some people get better, some people get worse, some stay the same... being a "support" group doesn't disable us, but enables us. Yes, we must live in reality, but at the same time, pain is all our realities and though you may have found amazing narcotic and social means to manage your pain some of us haven't.

Reality and the real world are important. But so is OUR DAILY REALITY of pain, suffering and disability. Several people on this site are house or bed bound through pain. I don't know if your RSD/ pain has ever been bad enough for this - but I know from experience that non RSDers don't understand this. They don't know what to say, though they want to visit they are scared they'll say the wrong thing, and after a while they stop visiting because they don't know what to say. you're the 17yr old sobbing in bed because you can't move and it hurts so much whilst they waited abit longer to visit because they still had hangovers from the night before.

If I woke up tomorrow and was pain free then I would do everything this RSD has stopped me doing. I would throw the wheelchair away, kiss goodbye to the carers and continue with my life. As would many people on this board. Is the relapse you are talking about a results of your own experiences? I have known people with RSD recover - and it is hard, there are psychological difficulties with adjusting to being more normal - generally to do with trying to pace themselves to AVOID the flares or deterioation in their condition - they discover that as they can run/ walk or whatever and want to do it all the time - then they are injured and back at square one.

I don't feel that many people on this site will appreciate this almost evangelical call to abandon other RSDers and pretend to be normal and let our disabilities work for us (that means I will soon be a circus freak - coming soon to a town near you - the amazing agonised pretzel queen) - it may have worked for you, it works to a small extent with me, but everyone on this site is an individual fighting their own battles. Have you considered that perhaps the thing that stops some people throwing themselves off bridges is that they are understood? That other people understand the agony, loneliness, fear etc of living with this? I am guessing from your message that you have never felt alone with this disease, never had questions and in fact must be an absoloutly amazing wonderwoman who can cope with all the emotional and physical aspects of this evil condition without help.

If so. Please share your magic ways with us so that we too can be cured, or at least cured to a point where we don't need support from others even if we still need wheelchairs and medication. If not, then please think in future about possible distress you may be causing people and that until you have walked/ rolled/ crawled/ been pushed a mile in another person's shoes you don't know what they are going through.

Frogga