Hi Angie,

Firstly, huge hugs, I know how scary this whole thing is.

Secondly - I am rewriting this for like the third time or something as I can't express myself today. I know how scared you are and how you are reacting to the fear by wanting to hide from everything (so cancelling drs appointments/ cookie swallows) because they scare you. I know that feeling totally. There are times I don't want to know test results, just looking at the dr tells you what they are and that's that. However, if things like the cookie swallow could either show you what was wrong or show you that it is from eating too fast/ not chewing then it would mean that is one less problem to deal with. I can't drink things like coke for a similar reason - they end up regurgitated - nice!

MS - is 50 years ahead of RSD in understanding. At the moment we all are all lumped together into a "syndrome" as we all have chronic pain, we all have alloydinia and some SNS symptoms eg colour change (at some point). Doesn't mean that we have the same disease processes or that every individual with an RSD diagnosis will be the same. (I know you didn't say that, but it was more about the random variety of symptoms). It is scary when you sit down and think how much your body has changed, such as ability to eat, see, hear, communicate, think clearly, breathe clearly, swallow, walk, stand, move, jump, grip, go to the bathroom, not regurgitate food etc and in many ways you don't realise at the time that the deterioation has occured.

I agree with Artist that you should try and get some rest and then phone the nurses and tell them. What exactly is up with your legs? (I am impressed you managed a bike ride at 100 degrees! impressive!). Nurses always respond better to the truth - and I live with 2 of them!!!! (although if I am deterioating then no one will ever talk about it and the RSD then becomes an abstract concept which can only be talked about in code) - but, I digress. Either give them a ring or give the dr a ring, because then you can get some help from them - it does sound as if you need someone to look at the new pain. With the icy burning - it's been another sx I have had for ages, and it sucks. Well. The whole disease sucks.

How long have you been studying psychology? It's my major at college at the moment. I love it.

So, have a rest, then pick up the phone. We are all with you in spirit even if not physically - and you know we are all supporting you to go and find out what is actually going on with the swallowing etc.

Love ya

Froggsy xxxxxxxxxxxxx