@sophie46 sorry to hear about another fellow sufferer of this horrible condition. I have had it f or ,many years ( 25?) Recently i'ev been on 10 mg of oxy 4 times a day or over 25 years. It does nothing for me, except cause tons of constipation. Recently my nurse PR actioner was on vacation. I got a substitute & when i told her my DX, she said That i was probably suffering greatly & i started crying She just said do u want Dilaudid? I thought i was hearing things? I said yes & now i am on Dilaudid 2 mg, 1 pill every 4 hours it's so much better. The only problem i have is severe constipation. I have a multitude of solutions for this ( none work that well) So i take Miralax once, usually twice a day. U have to be careful, as Miralax works a little too well. And i don't take it every 4 hours, Every day is different, but i try a nd stretch the doses out to every 5 or 6 hours, if i can. I've spent 25 yrs, begging for a decent treatment. This disease has ruined my life!! I switched nurse practioner's. When i told my regular RN, that OXY 10mg was doing nothing, I heard absolutely nothing like she was deaf in fact, i asked her kif she was familiar with the condition & she said she never heard of it I got so pissed! But i get how frustrated, u must be. I thought i was crazy etc