Probably one of the hardest things I find about dealing with EDS is the incessant nausea. It’s one of those things, that if the nausea went away, the rest of the EDS would be easier to deal with.
But add nausea to extreme fatigue, joint pain and constant dislocations and I get a little miserable.
Some things help – oranges for example. If, when I’m feeling like throwing up, I can force myself to suck on some orange segments, I can usually stave off the throwing up for a little bit. I also have anti emetics, which help with the vomiting, but don’t make the nausea go away. It’s really frustrating.
Even more frustrating when I talk to doctors (not my regular GP, who prescribes Pramin without blinking) and they can’t understand why nausea is associated with EDS. Aware only of the joint and dislocation side of things, the other symptoms of EDS often get overlooked, or played down.
Like a geneticist said ‘I have no studies showing incidences of nausea or more dislocations as it relates to a hormonal cycle’ regardless of the fact that anecdotal evidence shows time and time again that a rise in progesterone leaves female EDSers with more floppiness and nausea is a part of EDS for everyone. But of course, if it’s not in a study, published in a journal somewhere, then I can’t POSSIBLY have those symptoms as part of EDS.
At least now, after reading BendyGirl’s blog, I know I’m not the only one who vomits after sex! Maybe it’s all the joggling of my stomach, or maybe it’s the hormones released at orgasm, but either way, sex = nausea. Luckily, sex is more than worth it.
But I digress.
I’m stuck in a sort of rut with my nausea lately. A mucked up cycle ala a blighted ovum has sent me spiralling back into a 6 week long cycle, with ovulation fuck knows when – day 14 it feels like, EXACTLY where it should be. Unfortunately, that means I get a month of rising progesterone levels before I get my period and they fall off again. Which leaves me retching and feeling like the dead for oh, about 30 days of 42.
Not fun. Not fun at all.
When I see new doctors, for whatever reason, I do my best to give them a run down of what they’d expect to see symptom wise from someone presenting with EDS, who didn’t know that they had it. I do this to student doctors, physio’s, nurses, basically everyone in the medical field I can get my hands on. I educate them.
If you are a doctor/nurse/friend and someone presents with fatigue, nausea, achey joints, headaches, reduced concentration and a general feeling of unwellness and it’s lasting for a long time, months or years, then maybe, just maybe, it’s a connective tissue disorder. Generally, those symptoms above are the ones people notice, because if you’re bendy, being bendy is so normal that we don’t think to tell the doctor ‘On top of all that, I can put my feet behind my head and I’m amazing at yoga and athletic sex, oh and by the way, my joints do this *click*’.
The other thing I tend to try and educate doctors on is that most of the time, if they can’t come up with a diagnosis, it’s not because there isn’t one, but because they’re not looking hard enough or thinking outside of the box. I never ever want to see anyone else fobbed off with a diagnosis of Chronic Fatigue Syndrome if there is more to be done or investigated. Blood tests are not the be all and end all of diagnostics.
There. Educating. See?
When I was first sick and trying to get a diagnosis, because of my vomiting and nausea issues, I was ‘diagnosed’ with just about every form of eating disorder out there. Which was insane, because given a choice (and when I was feeling well) I was perfectly capable of eating bread and jam, topped with whipped cream, all without counting a single calorie or even feeling guilty about it.
I spent a lot of time then living on pasta with a little tomato soup through it, topped with lettuce and tomatoes. Healthy food and somehow, pasta (gluten containing, sweet sweet gluten) and salad was easier to keep down.
Nowadays the only pasta in my house is gluten free and somehow, it’s not quite the same, even when I do top it with salad.
So nausea. Probably one of the more draining sides of EDS. I’m sick of not sleeping because I’m too busy head down in the toilet, or not eating because I can’t swallow without retching.
If you’re interested, other EDSy bloggers can be found here:
(I know I read more than these, but my brain is blanking. Speak up if you’re blogging about EDS and I’ve not linked you, I’ll edit to include you.)