How do I cope with the terrible pain from SI Joint Degeneration - without Strong Opioids?

Hello. I've just turned 40, am married, and severely depressed after nearly 8 years of chronic spinal/disc pain. I had a PLIF (L4/L5 & L5/S1) in 2014 at the Princess Alexandra, Harlow. After 2 years of agony on my part and a lot of shrugging of shoulders on theirs (followed by a "we can't help you. That's it" ). We finally discover through the Royal National Orthopaedic Hospital in Stanmore , that my fusion has completely failed and I have Baastrups at L4/L5. I was gutted and angry that something so obvious has been missed, but also vindicated that it wasn't just hypersensitivity as I kept being told by the local pain clinic. I was adamant that it was something mechanically wrong, and I was right.

After much wrangling with the Stanmore , who refused to revise my failed fusion and collapsed vertebrae. I went privately to one of their ex Senior Surgeons. One year on and the scans show a nicely fused spine (the screws were starting to fall out previously). Yet I am STILL in agony because it transpires that my SI joints are degenerating badly. I can barely do a thing without it causing pain in my SI joints, and my groin and inner thighs. It's like red hot knitting needles or knives in my back or it feels as though someone is trying to forcibly pull my leg off.

The pain is worse at night and on movement which involves opening / stretching my legs (even going to the toilet). Any pressure from something (even my 8yr Daughter cuddling up to me), tight clothing like jeans, seat belts, being a passenger in a car (bump by roads and sudden braking are a killer). The worst though is sitting . I cannot sit on an ordinary chair for more than 10 minutes without needing opioids (40mls Oramorph ) or if really bad 100-200mg buccal Fentanyl .

So now I am terrified of doing anything! So I stay in bed laying on 4 visco elastic pillows to help the pressure and I am practically always knocked out on Opioids . I barely see my Husband, and I have missed out on everything with my Daughter. It breaks my heart and I don't know what to do. My DH lost his Mum a few weeks ago and he really needs my support, but I'm just out of it.

I came off all the meds this time last year by myself (800mg Fentanyl , 600mg Zomorph, and around 400mg Oramorph a day) . I had to wean myself off using 30/500mg codeine that my Mum gave me. I had no help from my GP, who firstly advised go cold turkey (! !) then confessed she was totally out of her depth. In the end I got off all the Opioids, but absolutely could not cope with the pain! ! ! So what's the point in doing it over again? ? I don't know what to do. I know about SI injections, nerve ablation etc , but the Stanmore pain clinic seems to be convinced I just need to get off the drugs and increase my fitness (physio sessions left me in tears) . I just don't trust anyone! I ended up with PTSD last time and came scarily close to an opioid OD, and had no real support from the MH 'Crisis' team.

But I don't want my life to exist of nothing but pain, crying, drugs, sedation and finally sleep. When I wake , I am usually weak, exhausted, groggy, and feel emotionally drained. The pain just takes the enjoyment out of everything I once loved. I dread going anywhere or doing anything . So now I've pretty much become a recluse. A useless Mother and Wife in name only. Only leaving this dark room for essential hospital appointments, which my carer takes me to. I seriously feel that it would be best for all concerned if I ended everything. Thank you for reading. Sorry it's such a long one. Emma xx

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