A little while ago I went to a rheumatologist to discuss my Ehlers Danlos and various pain management drugs.
At first, the lovely doctor was a little baffled as to why I was seeing her, as she was not a doctor who normally sees EDS – apparently in Tasmania, once you’ve gotten a diagnosis, you’re expected to stay at home and deal with it, not seek input from specialists. But maybe that was just the collective impression I’ve had from all the doctors I’ve seen.
We talked a little, as you do and she admitted that she knew very little about EDS, having only seen one, very mild case of it in her history of seeing patients. I wasn’t put off, I’d much prefer a doctor who admits they know very little and listen to me, rather than someone who knows very little, bluffs it out and ignores everything I’ve got to say.
Of course, we all know how bendy I am and I had to stop myself choking with laughter when she asked which joints of mine dislocate. I told her she’d be better of asking which ones don’t dislocate (to my knowledge, my right elbow is fine. So are my ring fingers. And I don’t think I’ve ever dislocated my spine. I’ve also never dislocated a patella, my knees when they dislocate prefer to pop out my fibula. Yay me) and so we worked through how broken I am.
We talked about pain management and she recommended a new drug, something that I’d not tried. It’s called Endep, and while it’s mostly prescribed for depression, it also works ‘off the label’ for insomnia (check) and pain (double check).
She was concerned about the possibility that my pain, while some of it is related to constant and recurrent dislocated, that it could actually be neuropathic. She was also quick to let me know that she didn’t think that it was ‘all in my head’ but instead, that my nerve signals were getting muddled and telling me I had pain when I didn’t.
Which um, hello pain episodes! I knew, from research, that my pain episodes were likely neuropathic in nature, but I couldn’t get my GP to listen to me properly when I tried to bring it up before. In his defence he is highly overworked, knows very little about EDS and so relies on me to research and present him with the best course of action. Fine when it’s ‘please redo my prescriptions’ less fine when it’s ‘I’m having issues with — and I need your help’.
Anyway.
I have pain episodes. They’re triggered by something hurting, something new, that my body isn’t prepared for, which in turn overloads my brain. When I’m having one, it feels like all my muscles are clenched, my skin feels like it’s burning and every nerve ending sets on fire. I can’t walk properly during one, because it hurts too much and if I’m touched suddenly, I have a panic attack because of the pain. It’s almost like an itch in the middle of your back you can’t scratch, your whole body focuses on it and everything else goes a little hazy.
To put it in perspective, a stubbed toe can cause a pain episode. My latest one was caused by my period starting, the period pain tipped my brain over the edge into a world of hurtiness.
The Endep, because they work on nerve pain, they help the pain episodes, something that no other (legal) drug has helped with yet.
So they’re working and working well – I’m managing to sleep again and my pain has calmed down. Inside a brain, the pain and anxiety centres are very close together (or else respond the same way to stimuli, I can’t quite remember), meaning that pain triggers anxiety and anxiety can trigger neuropathic pain
And there I was, falling apart, stuck in the centre of a giant vicious cycle. That I’ve now, hopefully, broken.
Of course, I’ve still got pain from the dislocations and I suspect we’ll see the onset of arthritis in my hands fairly soon, but the debilitating pain, that’s being helped.
I’m also still on a slow release Tramadol and a regime of panadol osteo (for bone pain) and it’s better than it was. I’m still fairly broken, but I’m not as messed up as I was.
I’ve got a referral to the pain management clinic as well, so I’m hoping that that will help a bit with the pain/anxiety cycle – but of course, like all good things it takes 9 months to get in to see them. Le sigh.
I’m in a good place at the moment, mentally (we’ll ignore my physical bits for now, fucked up mess that they are). Of course, there is a ‘clickiness’ in my heart, so I’m booked for an ECG to check my heart out and I’ve got a mild scoliosis that needs to be watched – something that I didn’t have a few years ago, but I’m in a good place.
Something that I definitely wasn’t a few weeks ago.
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Updated:
A visit with the doctor has seen my Endep changed to Cymbalta, which in the long term will be better for pain and anxiety. That said, it’s currently making me completely sleepless, so I’m not enjoying myself very much. Sigh. It feels like a balancing act, trying to work out what works best with minimal side effects and long term issues.
