Ehlers Danlos and Nausea

by Veronica on August 11, 2010

in Ehlers Danlos Syndrome

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.

Ugh.

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.

Not fun.

If you’re interested, other EDSy bloggers can be found here:

BendyGirl
The Tensile Times
BubbleGirl
Everyday Stranger
MeriLizzie

(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.)

{ 19 comments }

Barbara August 11, 2010 at 5:54 am

Nausea is horrible. Different I know but I had morning sickness with both pregnancies and I would have felt so much better if I could just throw up or stop feeling sick. The constant nausea was really draining.

You’re doing a great job educating people.

You’re an amazing person.

kim(frogpondsrock) August 11, 2010 at 6:09 am

When Mum was having chemo and was so dreadfully sick, it was the nausea that was the hardest to bear. She said to me on numerous times How awful the rotten bloody nausea must be for you. Small comfort I know sweetheart small comfort. I had low level nausea for a week or so recently and it was horrible.

It was terribly draining trying to find a diagnosis for you sweetheart. I was so worried about you when you first started to show symptoms, I worried that you had a brain tumour, that you had cancer, lupus, or any of a number of dreadful things.

The loneliness of worrying about a sick child is very intense as well. Because the worry is all consuming it limits the amount of people that you can talk to. As acquaintances and colleagues really don’t want to know how you are when they ask and it is only very good friends that stick with you for the journey,as you talk endlessly about how worried you are about your child with the mystery illness.

Marylin August 11, 2010 at 7:22 am

*hugs* lots of very big (but gentle!) *hugs*
xxx

Helen August 11, 2010 at 8:56 am

I’m reading this after a sleepless night of nausea. Interesting! I have classical EDS. I’ve spent today wondering if the nausea came from Fibro, Chronic Fatigue Syndrome, EDS, and poof here was your blog! THANKS!!!

Jayne August 11, 2010 at 8:57 am

I can tolerate almost anything except nausea and I feel for you xxx

Watershedd August 11, 2010 at 9:38 am

Can’t imagine days of nausea. Mum apparently suffered for the full term of her pregnancy with me. She was able to manage it with medication for 6 months (she was 3 months in before they worked out she was pregnant … lots of negative pregnancy tests and she was losing weight, not gaining).

Veronica, if you are interested there are a large number of medical journals available online through Pub Med. there’s just sooooo much information out there that you have a good chance of finding out something (again) that the doctors have yet to read. You amy already know of this, but if not, here’s how to access. When you do a search it will bring up huge list of articles that may seem unrelated and probably only mention your search term in passing, so sift through the guff. The quickest thing is to click on the link on the top right that says “Free Full Text” and will tell you the number of articles available. Be precise with you search terms to help sort out the rubbish.

Lisa August 11, 2010 at 9:42 am

I deal with nausea almost constantly. Because I’m fat no one took it seriously. Eventually I was dx’d with gall stones and they don’t explain it all but between that and the EDS I just accept that I’ll have to live with it. Not much helps but I’m grateful for the citrus fruit suggestion. It does help. Phenergan doesn’t do much anymore.

It is also nice to read that other people experience confusion. My memory has steadily gone downhill and I’m getting more and more easily confused. I haven’t really read anything that associates that with EDS. Frankly, it has been a point of stress and worry. I’m not happy to learn that it might be just another EDS quirk that I can’t do much about but at least it probably isn’t something else. Yay for notes and lists.

Cri August 11, 2010 at 9:58 am

i still wonder if i have EDS or not. I’m finally being treated for all the hormone issues i’ve had for ten years that have wreaked havoc all the way through my body. but still, this nags at me in the back of my mind. im so sorry about the nausea. i’m finally on an anti nausea thats working quite well for me called diclectin. but my nausea is pregnancy related, though even before this i still very frequently had nausea. more so than anyone else i know besides yourself. i can handle pain, but nausea? no effing way. its just too much. i really hope you eventually find something that works for you. like, really really. and soon.

Kristin (Wanderlust) August 11, 2010 at 2:24 pm

Oh ugh. Just UGH. I had terrible, terrible nausea and vomiting with both pregnancies and I know how uncomfortable that is. I never understood either why they called it morning sickness when it was 24 hours, or why they said to eat crackers when the thought of crackers just made me more sick. Anyway, you are such a trooper to constantly educate the way you do. That must get tiresome. Hugs. xx

sharon August 11, 2010 at 5:16 pm

Nausea is the pits. I think I’d rather actually vomit than just feel nauseous and I am almost phobic about vomit! You would think that your medical notes at your GP centre would be marked very clearly with your regular drug treatments so that you don’t have to explain every time your own GP isn’t available. Would a few months on a contraceptive pill give you a break from the hormone roundabout?

Veronica August 11, 2010 at 5:21 pm

Sharon – there is only one doctor at my clinic, so it’s all good there – it was the geneticist who poo pooed the idea of nausea in EDS, said he’d never heard of it.

river August 11, 2010 at 6:52 pm

I knew you suffered nausea, but I had no idea it was this constant. Is there nothing you can take for it? Nothing at all? Somebody needs to do a little research and invent something. A medical breakthrough that would sweep the world.
Any scientists out there reading this?
Get busy.

Tanya August 11, 2010 at 9:26 pm

Big Hugs V.

I cannot handle nausea or vomiting so I really feel for you :-(

As you said, things would be a little easier to deal with without it.

I don’t know if this will help at all but the only thing that curbed my nausea (when pregnant) was sucking on a mint. It sounds stupid but the taste was so strong that I concentrated on that instead of the nausea and sucking on it gave me something to do.

Maybe a big bag of cheapo ones might be worth trying? I know it does sound silly!

BubbleGirl August 12, 2010 at 12:09 am

I remember the nausea from when I was pregnant. I lost 30 pounds in 2 weeks. That was horrible. I still get nauseous more than a lot of people, but thankfully it is not constant. I feel for you.

@Lisa
The memory issues with EDS, lack of concentration, fuzziness, etc. might be caused by the pain. I read an article recently which says that chronic pain can affect the brain in a way which causes forgetfulness in people of any age. You think I can remember where I saw it? Nope… But I found an article similar to the one I read here…

http://www.sciencedaily.com/releases/2007/05/070517142536.htm

BubbleGirl August 12, 2010 at 12:13 am

I just found on of the blogs I follow has a product review for an anti-nausea product.

Over here at Bad Glue : http://badglue.blogspot.com/

BendyGirl August 12, 2010 at 12:39 am

I go through stages with the nausea, it’ll last for months and months, years at times, then ease off until it decides to return. I know what you mean, it’s incredibly draining, would be so much better just to vomit and get it over with. I *think* it’s because of the increased laxity when our hormones are worst, but I’m fairly certain there’s more to it than *just* hormones.
One thing that most improved my constant nausea was stopping taking metoclopramide (pramin) turns out that the medication can increase laxity and make the nausea worse for us. Ondansetron was better, but it’s ridiculously expensive and also perpetuated the nausea/vomiting cycle after a short time. I find omeprazole helpful though as it keeps the reflux under control and at least breaks that part of the cycle.
The best way I’ve found of controlling nausea is to eat very, very frequent small amounts of food as it seems to worsen when the stomach empties. I also find Bovril really helpful when I can’t stomach anything else (you can get a veggie version I think) and also, bizarrely fizzy drinks. Something to do with the gas seems to help the stomach stay inflated and stop it flopping in on itself, so just a few sips can settle my stomach enough to allow me to try and eat.

You’re right though, it’s exhausting and endless. Mine is going through a better stage now I’ve come off the Oxycontin (though I think that may just be relatively!) I hope yours also eases off again really soon. Hugs sweetheart BG Xx

Angela August 12, 2010 at 10:06 pm

Nausea, ugh. It’s the one thing that I cant handle.

Issac August 29, 2010 at 7:45 pm

What is EDS?

Veronica August 29, 2010 at 8:00 pm

Isaac – it’s Ehlers Danlos Syndrome, didn’t you read the title of the post? http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome

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