What a month. On April 30, I saw a specialist rheumatologist. The next day, I was emailed a copy of my clinic letter confirming a diagnosis of Ehlers-Danlos HT/III.
And since then, it’s been all go. I’ve had consultations with a Clinical Psychologist for Pain Management – and started CBT – and with a Cardiologist who’s investigating whether I have Postural Orthostatic Tachycardia Syndrome (they think it’s likely). I’ve been advised to seek a Mast Cell Activation Syndrome diagnosis as many of my symptoms are consistent and it has close links to EDS and POTS. I’ve gone back to my favourite physiotherapist who is making me use the dreaded foam roller and complete exercises to try and correct the instability at the base of my spine. She also found one of my legs is shorter than the other. Hah. And I finally got a codeine prescription to help with my daily pain because over-the-counter cocodamol isn’t strong enough.
I am still weathering the transition period with my codeine dose though. The first day, I didn’t quite eat enough (it’s an appetite suppressant) with my last dose which ended in slurred words, drunk toddler coordination, and then a slamming opiate hangover.
It is not fair to be the girl who doesn’t drink and still end up with sick-to-your-stomach hangover symptoms. But, frankly, chronic illness doesn’t care to be fair.
The month has been harder than previous months because all my focus has really been on what’s wrong with me and how much pain I’m in and exactly which symptoms I have when. I’ve also had appointments with all these various specialists (in their fields and in my conditions) which is a lot more travelling than I’d usually do.
But there’s also hope. The more I learn about the physiology of pain the more I feel like I can have some control over my life back. Proper medication will hopefully help me to stop self-medicating with food.
So, yesterday I was strapped to a table and suspended at 60° while covered in electrodes and blood pressure cuffs. Today I’m still wearing a portable heart monitor – with electrodes stickered to my chest and ribs in such a way that I can’t wear a bra for the next week.
After that there may be more ridiculous or annoying tests. It seems likely. But at least things are moving. At least no one is telling me they don’t know why I feel so awful and maybe I should take some Prozac. (In fact, my psychologist confirmed I am not depressed at all merely severely anxious which is a direct result of the massive amount of pain I’ve been living through everyday.) All of a sudden, my symptoms make sense to the many, many doctors I’m seeing and they’re all working together to make me the best version of myself I can be, health wise at least.