Ok. I really think we should calm this down a little bit.

I think the more this forum continues the more I realise how important not only what I say but how I phrase something is! The identical same idea, framed in two different ways can lead to totally different responses (If any one is interested - that's economic framing theory and why advertisers make things only 10% fat instead of 90% fat free - identical, but worded differently).

Mommy J. I have lived with this disease for 5 years and I can empathise with some of your ideas - such as not letting RSD take over your life - it is a major PART of it but it shouldn't RUN it. I also agree it is important your life shouldn't be just illness related but encompass other things that make us the people and individuals are. This is something I have seen across this forum - as people who are limited to the house or to bed start up threads on hobbies they enjoy or ideas for keeping mentally and physically busy to help with distractions (I think I mentioned the threads to you).

As I mentioned, I also agree with you that doctors are too fast to blame everything we suffer as RSD - (although then again, I can also complain about other doctors who search for something that isn't RSD - ending up with MS/ MD/ primary generalised dystonia/ Central Pain Syndrome and gosh knows what else!....... However, I feel that as RSD is not a well known disease and it's affects on individuals are different - we cannot say what IS RSD and what isn't - well, I can't. (eg the spasms - is this RSD? or is it dystonia? what about the spasms before the dystonia? or even the temperature change - is it RSD? or Raynauds? or did the RSD cause Raynauds? or is it something totally different?). It has taken me a while to learn that I am never going to have a full fitting label for what is wrong with me and I am unlikely to find the answers to my RSD questions. About rashes - I have had them ever since I developed RSD - and never had them before. The easiest way to tell if I'm about to flare up or collapse is to look at my throat and chest - if the rashes start then I am about to get ill. I have never seen information linking CORE body temperature to RSD and don't know if it affects it - it would make sense if it did because it's another part of the autonomic system which is responsible for homeostasis of all that stuff. I have however seen research about the limb temperature - the colder the RSD limb is the more tough you have to be with the treatment/ physio but you can still get better!!!

Also - from what I understand - RSD leads to hypoxia and chronic pain and neurological issues. Hypoxia --> POSSIBLE circulation issues, blood clots, non healing skin, easy to get pressure ulcers etc, infections easily got, muscle weakness and osteoporosis (hot bone) as well as increased pain. Also nerves dying off because of basically, interior frostbite (I haven't got the references but will find them if you wish).

Chronic pain --> lower immune system, tachycardia, blood pressure, weak/ strong pulse, fatigue, other types of chronic pain for instance from postural problems (hold your neck funny so it hurts less, then get a headache etc)/ digestion issues/ reproductive issues (periods stopping etc)/ problems with internal clocks/ sleep/ visual/ auditory/ concentration issues, Oh, and psychiatric issues such as depression, anxiety etc etc.

neuro issues --> bad proprioception/ movement initiation/ stress tests/ co-ordination/ control of various organs etc etc.

so even though it might not be PURE RSD, the symptoms themselves can create diseases or other problems themselves.

RSD does suck so much. Many people are lucky and recover but for those that don't it can be a very long and difficult and scary journey. This forum is important for that - to give people individual support as they work their way through to being able to "live with" it. The RSD spectrum can be very hard to deal with - I am very disabled from the RSD (I have mild movement in my right arm/ shoulder and movement on my face but that's pretty much it. I have severe dystonia and I have 24hr carers and am stuck either in bed or in my wheelchir.) BUT, this happens to very few people. But. what am I supposed to do? If we want to show newly diagnosed people that they can get better - I am simply scaring them? maybe their should be a bone yard for those with intractable disease? (ok. that's me over reacting).

MommyJ. I am very sorry that you feel the way you do about the forum. I also wish that you could think before you write and re-read your posts. You have interesting points, but they cause so much conflict that the actual ideas behind them are rarely discussed.

Frogga xxxxxx