Sorry I had so many typos in my last post 
I was so angry you’d been left like this I got all righteously indignant and my fingers went far slower than my words!
I’m glad you’ve had lots of tests, though if they were all commissioned through a GP practise then I will just annoyingly mention that they aren’t a substitute for getting in front of a really good specialist though, but I’m aware I’m being annoying and I won’t follow up more on that!
I find it utterly exhausting and dispiriting when others start from the beginning of the journey and assume ‘there must be a better answer’ when you’ve been down that road for years and really no, that longing for an answer becomes more about you having to deal with other people’s paychological discomfort rather than them helping you.
So I’ll certainly not be going any further down that road, as it’s ruddy depressing and alienating.
I mentioned (& misspelled!) a Complex pain team as I’d been though a normal hospital based pain team and found them utterly rubbish, but finally got taken seriously and they actually addressed my pain and the person they saw in front of them, rather than the lazy stereotypes and idiotic assumptions they made after two seconds of judging me.
They literally changed my life. Life is still incredibly hard, but compared to pre-them, I have some hope and some idea that if I manage to overcome other problems there’s a chance life might become something I can live again. That probably doesn’t sound that great, but believe me, compared to the bleak present and future I was staring at, it’s a blooming miracle!
Anyway, this whole pip thing is a tough process to go through, but worth it if you can bare it, as the money helps so much, even in just getting to a hospital appointments or a physio etc.
I would say, prepare for it to be hard, that way if it isn’t, it will be a nice surprise! But if it is hard, you’re not shocked by it or unprepared to know what to do next. There’s are a few fb groups that are very helpful in guiding you through the process, and it’s worth reading up on the tricks that might happen, although remember that they won’t all happen to you, so it’s not about telling your fortune, it’s about getting preparing by knowing what they might do or not do, and how not to fall for it.
Also, it’s worth knowing that unlike other processes, they deliberately reject a large proportion of claims, not based on your validity, but because they want to make it as difficult as possible. They hope people give up. And I understand there is some nonsense that only the really in need will continue... which of course isn’t true, as the ill and vulnerable will quietly give up in desperation as they don’t have the resources to keep fighting. That’s the mental, physical, emotional or financial resources. In this way the government have clearly ended up creating a system that favors cheats. Stupid Fools.
Anyway! They hope people will give up and not appeal. But actually an (extremely!) large percentage of appeals are awarded, so it’s worth reframing it in your head as just one more stage of the process, rather than a shocking and emotionally upsetting last ditch attempt that is stacked against you.
Hopefully it won’t get to that stage at all, and all that advice will be completely irrelevant. But, if you go in thinking it’s quite normal for a first application to be refused and you might well need to go to appeal... but it will all be ok in the end as long as you prepare as much as you can. That way if they do refuse first time on some ridiculous grounds that have a good chance of being overturned, you’ll be able to take that chance, because youll be ready to go onto appeal stage.
It’s awdul when you see someone utterly crushed by a refusal, because they likely would have got a better result if only they had been able to carry on.
And just to balance all that doom and gloom ness, take heart. The early days of pip were outrageously bad, but they have got a bit better. Some of the horror stories you’ll hear are no longer current.
(Is it too late for tea and cake?!)