Hi, I'm looking for ideas now I can out a name to the problem at last.
I'll start with a brief history, just like at a doctors!

I was born with dislocated hips, legs were put in splints, I have looser joints than anyone I have ever met. As a teenager I was diagnosed with labrynthitis in my ears, symptoms were dizziness and near fainting, but I didn't respond to the treatment, so it wasn't that and I still get it. I dislocated knees on an almost weekly basis as a teenager, that finally stopped when I was 25, but I am still so careful, they nearly go sometimes and give out on me sometimes. Occasionally I dislocated other joints, but not repeatedly like my knees. During my third pregnancy I was told my frequent falls were my loose pelvis joints moving to crush the nerves controlling my legs, they couldn't understand it, they said the pelvis is fused and can't move, but mine was moving. They told me I risked permanent disability if I had more children. I take beta blockers for my irregular heartbeat. My periods are so heavy I was told by Dr I ought to have a hysterectomy, but I haven't. I also have wrinkly hands from the loose skin on them and droopy eyelids.

I was diagnosed with EDS just last week, age 44. I got 9/9 on the joint mobility tests alone.

My son was diagnosed just two weeks before, in an unrelated way, he had neck pain caused by his overcurved spine, then was diagnosed. He bruises spectacularly. My two other boys have hypermobility, but no other symptoms at present (except once fainting on the bus). My Dad is also hypermobile, but my two sisters and brother are not. I'm the only female in the family with it so I guess its the lower muscle tone which makes it seem worse for me than they seem to be. (Its a lot more than me being more of a wimp than them)

So 27 years ago, aged 17, I was diagnosed with IBS. Since then I have had every test, scope and barium meal going and they found nothing wrong every time. At its worst, maybe 10 years ago, three or four times a week I had four hour periods of extreme pain in my abdomen. The pain was as bad as second stage labour, in fact it was very similar, I tried every painkiller and antispasmodic, they didn't even work a little. After 4 hours the pain would go as quickly as it came.

My doctor couldn't understand it, there was nothing physically wrong except my pain, either after eating certain foods, or not, avoiding foods didn't stop it, but eating certain foods aggravated it.

So after developing osteoarthritis last year I got a blood test, it was positive for rheumatoid factor and negative for inflammatory markers. I was sent to a rheumatologist. He diagnosed me, EDS hypermobility type. Then he prescribed painkillers and sent me on my way.

I thought maybe a diagnosis would help, but not so far.

My son's physiotherapist let me try orthodic insoles she had, wow, I am getting some of those, I stood comfortably for the first time ever. She said my posture was instantly better, it felt better for sure.

But does anyone know how to help the abdominal pain?

Is there anything else I should know?

Painkillers work somewhat for the joint pain, but nothing works for the GI pain. I manage only by eating very little, but its not ideal, I get grouchy when I'm both hungry and in pain with my joints too!