I'm just really out of ideas on what to do about my neck as doctors don't think it's a significant problem and physiotherapy and chiropractic work don't seem to have made any difference. I'd really appreciate any feedback anyone here can give to confirm as I think that this is probably not EDS, but also, and mainly, any leads anyone can give me on getting help with a neck that doesn't seem stable on it's own, is structurally flawed, and has muscles in spasm throughout and around it.
I m wondering if anyone in this group is able to point me in the right...
Thats all very normal for EDS. Have you had imaging to check for craniocervical instability (CCI) or looked into soft and hard collars or mcconnell/kinseo taping for 'the golden triangle' of neck, shoulders and upper back?
And you prob know this already but what youre describing about posture issues and difficulty holding your head up as a child is called hypotonia. Its a bit more common with classic type EDS than hypermobile type but its a neurological issue so can go with any type