Continuing my trudge through the various bits of the NHS, this morning, I was seen by a consultant specialising in sleep disorders. His main conclusion was that medicine struggles with conditions like mine/ours because it has become too narrowly specialised. Systemic auto-immune disorders affect all our body systems, and no single consultant has sufficient expertise to understand the complex interactions that underlie our symptoms. So we end up being treated piecemeal, with multiple drugs that may not work well together. Even rheumatologists, in his view, rarely had sufficient expertise in the necessary fields.
He could tell me that I don't have a sleep disorder of the kind that is normally seen in his clinic, but I clearly do have insomnia with unusual features, that is unlikely to be helped with CBT.
We talked about medication, and he had some interesting opinions. For example, he said he never uses amitriptyline because he's found it produces too many unwanted effects in his patients. He also advised me against starting a SSRI in the absence of a diagnosis of clinical depression (as my neurologist had suggested).
He did offer me a full sleep laboratory investigation (with electrodes etc), but said this won't be available until he's managed to recruit a suitable specialist into the team - and they are rare as hen's teeth (he took a call from a candidate currently based in another country while I was there).
In conclusion, an interesting discussion. But the bottom line is that he could offer nothing in the way of understanding my problems, far less treating them....