Thank you to everyone who replied. I don't know what Mono is, it's not a term that is used in the UK. I would very much like to have an MRI, I can pay privately if the NHS won't. To Nurse Nancy, in answer to your question - yes, I do think my muscles contract to the point of pain, weakness, debilitation etc but it's new, it's not normal and its not nice.

I have a good GP but she defers totally to my Consultants. They agree some neuro symptoms but not indicative of any one thing. Also, Lupus can do literally anything so it's a useful catch-all. Perhaps I have just answered my own question??

Many thanks x