Mommy Jen I am sorry that it took so long for you to be diagnosed with lupus - and yes, it is wrong that doctors attribute everything to RSD because it's easier - it shouldn't be like that. But, unfortunatly, it is.

I have severe (full body) dystonia caused by the RSD. According to my rheum (who specialises in RSD in the UK) she sees a subset of patients with dystonia and RSD and that this group of patients makes up about 20% of her patients. It is not an official statistic, but that's what I have been told in person.

Another issue with the "muscle wasting" is proprioception - if you don't know where you limb is and your brain is ignoring it then it will obviosuly not be used as much. Proprioception is due to the overwriting of brain patterns by pain signals (again, a quote from my dr - Prof Blake and Dr McCabe at the national hospital for rheumatic diseases in Bath otherwise known as the Mineral water hospital) which means the brain can't understand where your limb is and thus it is used less. This could explain why you can walk around your house but not outside as you know where you are in space as related to your house - because I bet if you moved the furniture around then you would struggle more because your brain wouldn't be able to understand where it is. Or you could just be lucky.

Well... even if we are just looking at the clinical features and their possible disabling effect (ignoring mood issues/ depression/ effect of severe pain/ sensitivity etc).

Osteoporosis/ bone changes --> (can be) disabling - hot bone syndrome
muscle wasting/ weakness --> disabling (not always caused by lack of use)
peculiar sensations --> numbness can inhibit movement not through lack of use but through loss of control of it.

(this is taken from CRPS & RSD Patient information booklet - published by RSD UK in association with the neuroscience resaech group, RNHRD Bath, UK).

I think we must all remeber that RSD is a very complex disorder - we are all individuals and MANY people get better from this, or at least recover to a point where their daily life is little affected by it.

I will have to come back to this - my pain is too bad to do this atm and vision is going.

Frogga