Originally Posted by Auberon

Please excuse my jumping in here, respectfully Vicc, and Tayla, I think it is more that they are nerves misbehaving - not performing normally in type I and we categorically don't know why. There is no black & white with any biological system.

I comment herein respectfully and this is probably a case of semantics and being pedantic on my part. I would think we are in the realms of hypotheses as in "a supposition made as a basis for reasoning, without assumption of its truth, or as a starting point for investigation" .....Concise Oxford Dictionary.....and to quote the dictionary again

" Theory: Supposition explaining something especially one based on principles independent of the phenomena etc.

Unfortunately, I think we are still at the hypothesis stage despite being aware of this incidious thing since the American Civil War. I fear CRPS has been studied in such small groups and work done on medical practice stats and opinion rather than collective studies that it is limited in its application of certainty. These doctors mean well but they don't have access to large numbers of patient and I might add that the researchers also mean well but they just don't have the numbers...as in size of sample. They are often using numbers like 50 participants.....very small samples. It is that fundamental.

So we come to the expectation of the impossible .....at this stage.....a theory is able to be proven with a degree of certainty whereas a null hypothesis can be disproved with a degree of certainty so an hypothesis can be confirmed with a reasonable statistical degree of certainty but the numbers don't appear to exist collectively.

As we don't KNOW all of the roles of the nervous system jigsaw puzzle and its interaction with the bodies’ systems this becomes quite curly.
In fact, that might get us as a group heading somewhere whereby we can try to influence the researchers were we to do it tactically on how we are most affected.

It's like the null hypothesis in stats. You say the opposite to that which you wish to prove & then prove it is wrong.....then you know the hypothesis proper (the theory) is correct within defined limits of certainty.
I'm not well enough by any stretch of the imagination to try to collate a meta-analysis along these lines.

The hypothesis that is out there that appears to give the most consistent little snippets of relief is that it is related to the nervous system. It must certainly include the nervous system as pain receptors are involved and certainly the higher order operants of the Higher order control of Autonomic functions.

I also think it curious that if nociceptive pain is relieved by opioids and the balance of pain source for many patients is nociceptive then they get a fantastic improvement in quality of life. I think there seems to be some confusion (I'm not sure that is the right word) with the Gate Control Theory and SCS has given such a degree of relief to so many patients - sadly, it didn't help me and yet opioids delivered intrathecally gives tremendous relief for some.

Those meds that quieten the nervous system whether they be anti-epileptics, tricyclic antidepressants have been a boon to many. Again...not I.

I am merely suggesting that if we were to, as patients, suggest the major irritants (stimulant) and the responses they cause us in large numbers we might actually get somewhere and work with the researchers to crack this nut.

The British and the Canadian RSD groups are great too.
We are a big group but if data could be combined worldwide before research is done rather than retrospectively reviewing small studies, a positive direction might be found for us all.

Very best wishes
Auberon