Hypermobility syndrome and chronic pain

[Runningtokeepstill]

Having a "wits end" moment about my 15 year old son. He was dxd with Hypermobility Syndrome (hms) and chronic pain syndrome by Great Ormond St Hospital aged 10, after a year of pain and mobility difficulties and lots of local investigations. Although GOSH got him more mobile they said he needed psychological help but local CAMHS have always said they don't have the expertise to help in his case and that ds isn't suitable for the therapies they offer.

Basically he ended up being signed off by everyone as they couldn't help. He's hardly been in school since the end of Yr 5 and trying to just push him to go in ended up with the pain getting worse and everything getting so bad he could only get about in a wheelchair. His secondary school wasn't sympathetic and when DH became seriously ill we pulled ds out of school for a year for home ed as we just couldn't fight on all fronts at once.

After DH's death just over a year ago, home ed wasn't working and with a bit of a fight I got DS into a much better school. He's been managing 60% attendance (brilliant for him) but had a mega flare up in November and hasn't been back to school since then. He seems exhausted, cannot sleep at nights and hardly leaves the house. He tries to work but is "mushy brained" when he is like this.

There are no local pain services for under 18's. At my request our GP has now referred him to the Pain Services at the Royal National Hospital for Rheumatic Diseases in Bath. This is meandering through the system and I anticipate them seeing him for an assessment but what can I do in the meantime? I am exhausted with trying to deal with it all. There don't seem to be many dc with hms that have got stuck in such an extreme reaction. He's not very bendy and I think it's the abnormal pain responses that are the main problem. It all started after he fell off his bed and onto his back when he was 9 but extensive investigation show no injury.

He's now totally demoralised and cannot see life ever improving.