The day of seeing the Pain Clinic arrives. I have been researching latest treatments and I find one that seems really promising in terms of pain relief – infusions. I print off the latest studies to take with me.
I also take a list of medications/treatments tried and my diagnosis list. My mind usually goes blank when I’m asked, so it’s helpful to have to hand. My heart sinks a little when he asks about treatments I’ve tried – all the standard alternative and normal – physio/hydro etc and then follows up with ah, that’s a shame, you’ve tried everything I was going to suggest.
I want someone with flare! Imagination! Pain is unique and different for everyone, and if you can’t handle someone whose tried acupuncture already and found it unhelpful, then I’m going to struggle with that. So I bring him back to my main reason for referral – facet joint injections. My one last remaining hope.
But he, sadly, is not hopeful. He explains that normally they’d help (normally, normally – I hate that work. Normally surgery would work, normally treatment would work, but with you…) but because of my condition – my whole spine isn’t being held in place properly. If he injected the main site of pain, it’s highly likely that immediately the sites above and below would become the problem instead, so I’d want injections there, and then immediately the next sites would go… and so on.
I then ask about the infusions and he tells me they don’t do them there, and even if they did they wouldn’t be likely to do them to people with Ehlers-Danlos Syndrome as there’s so few of us. Right, so because it’s a highly undiagnosed condition – we deserve to be dismissed.
So my suggested treatment plan is upping my morphine patches until the highest dose possible. If I’m still in pain, then they’d look at the injections. Which will likely make me put on more weight.
The patches have added risks of fatigue, and messing with my hormones (i.e. increasing the acne I already have from using the patches.)
That’s it. That’s my whole treatment plan.
I then explain how helpful I find massage, but I’m worrying about how I will afford it when I finish work at the end of March. He agrees to write in my letter that I need massage as a treatment, which my GP should then be able to set up.
So, it seems this is my life. Painkillers on top of painkillers.