Thanks for your reply en bloc. I don't know why I went along with triceps but the surgeon and neuro both explained that triceps was a good place to sample when looking at systemic weakness/primary muscle disease. I asked whether denervation of muscle is classed as primary muscle disease and he said yes. I still believe that some muscles can show denervation and others might not so for that reason wish I'd gone with legs where it is worse. I was too scared because even touching my legs hurts like hell. I asked if he'd support leg biopsy and he would but was insistent he still didn't feel this was a primary muscle issue! I have much slimmer arms and they are very weak yet that muscle was clear. I'm confused buy I may go back and ask for the leg biopsy.

I now feel convinced I do have ehlers danlos syndrome. I'm booked in to see a specialist in June in order to investigate this and hopefully confirm my diagnosis. I joined a Facebook group recently and alot of people have all the issues I have including neurological issues. I am very hypermobile and just didn't realise how much I differed from regular people until I started looking into this recently. Because collagen is everywhere in your body, even your nerves, everything can be affected. The defective collagen is due to a gene defect. There would be no treatment for any of this with EDS as the cause which is devastating to be honest.

When I told neuro about pain including face pain he suggested gabapentin and upping the dose and I just switched off. I've managed to reduce it to help sedation so this isn't much of an option. I am going to go back to the neuro ref this face pain as it's debilitating beyond words now and getting worse.

Does anyone have any advice about what to put on ones face topically? It's as dry as a lizard but is very sensitive to creams and stings horribly if I put cream on. I need to protect it from the elements as it's so delicate to the sun and wind. Has anyone tried anything for a badly affected sfn face?!