Hi Guys
I've been wanting to let you know what's going on here for a while, but just haven't been up to posting. These rollercoaster rides (when we're changing medications) never let us to let us do what we'd like, when we'd like!
Here's a quick recap of my situation first: Recently I had to come off oxycontin because the side effects outweighed the pain relief benefits, and I began taking Jurnista- which is a 24 hour version of hydromorphine. We slowly lowered the oxy dose and upped the Jurnista dose, then I stayed on a decent dose of that for a few weeks, but unfortunately it gave me no pain relief at all, neither did the Dilaudid tablets I've been taking for breakthrough pain.
I've pretty much had the intense raw RSD pain that you get when you're off all medications. Cutting my leg off with a rusty saw would hurt
LESS than the pain I've been in lately. It hasn't been letting up- staying at the intolerable peak level 24/7 and it's taken everything from me and left me as a shell of a person, sitting in the corner, rocking back and forth and crying. This is the ugly face of full blown RSD pain, I guess.
But it's school holidays at the moment and my poor kids have had to be home with me while I'm going through all this, which is no fun for them (my husband has been home too, I'm not alone with the kids like this). The kids have been so patient during this suckful time, but they shouldn't have to see me in this much pain, day in day out. Plus it upsets them that
they can't help me feel better.
I'm sad the Jurnista didn't work for me, but I'm still glad I tried it. It didn't give me any bad side effects so it would have been perfect if only it gave me some pain relief. Still, it's not often a new RSD medication becomes available so I'm glad I gave it a go.
And one thing DID come out of the medication changeover (note I didn't say one
good thing!)- I'm still getting the heart and breathing problems that I had on oxycontin. Which shows that it wasn't the oxycontin causing those problems, but the RSD itself.
That's the outcome I was hoping to avoid, as I don't want to have ongoing breathing and heart rate symptoms all the time, but I guess I don't get much say in it, hey?!
So now I go back on the medication rollercoaster (anyone would think I enjoy this process, I do it so much!
) I'll slowly come off Jurnista and go onto
MS Contin, and take a morphine syrup for breathrough pain. I used to get good pain relief from MS Contin (back in 2004 & 2007) so I'm hoping that will be the case this time. It better be the case- it's my birthday in 13 days and I am NOT going to be in this much pain on my birthday!
Thanks to everyone who has supported me during this horrible transition time, and had their fingers crossed that the Jurnista would work. You can UNcross your fingers now! lol Wait, no, please cross them again- in the hope that the MS Contin gives me the pain relief I so desperately need.
Thanks guys
x Kate