anyone else here with ehlers-danlos syndrome?

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hi all,
i have recently been diagnosed with ehlers danlos syndrome (hypermobility type).
basically it is a connective tissue disorder where i am not able to produce elastain properly, with unfortunate consequences.
luckily my version is considered 'mild'. but for me it is behind all sorts of bodily phenomena such as lifelong digestive problems, multiple allergies, easy bruising, difficulty in stopping bleeding, spontaneous dislocation of smaller joints, low blood pressure (squishy veins mean that the body frequently cannot get enough blood to where it is most needed, e.g. the head) and hence i get a whole fun set of symptoms (inc. sleep apnea) that are part of 'disautonomia'.
http://www.ehlers-danlos.org/what-is-ed ... ypermobile
i wondered if this is unusual for a co-morbid for high functioning autistics (like me) or perhaps if dealing with this all my life (the brain fog and fatigue!) has impacted my social development in such a way as to make me autistic?
well, i am still getting to grips with all this but your thoughts and experiences would be appreciated.
sepia

Is there anything specificially you would like to know?

I have been diagnosed with Marfan syndrome and Ehlers- Danlos (Hypermobility). I had genetic testing done to ascertain what syndrome I had as I have so much wrong with me that is is not a joke.

I am very sick quite often and unfortunately i am in pain a lot of the time.

Some other questions:

How tall are you?
How much do you weigh?
Do you have food allergies?
Do you have children?
Do you get dislocations from sleeping?
Do you have the chipmonk cheeks?
What is your eyesight like?

heya, sorry to hear you are in pain a lot of the time. i am in discomfort more than pain, but i used to have days where i felt normal. this is now a distant years ago memory. but since i am newly diagnosed, maybe things will get better as i find new coping mechanisms.
ok - questions time

How tall are you? 5ft 6" (but arms and hands and feet are proportionally long and bony)
How much do you weigh? 8st 7lbs - you can see more of the marfans in my facial structure.
Do you have food allergies? dairy, wheat/gluten intolerant, sugars upset my system, some other additives are suspect, prunus family of fruit.
Do you have children? no
Do you get dislocations from sleeping? yes esp arms, shoulders, ankle, feet but mostly smaller joints.
Do you have the chipmonk cheeks? i have very flat cheeks but soft jaws and cheeks
What is your eyesight like? crappy. didn't really need glasses until age 25 but even with them i cannot see well when i am tired which is frankly most of the time!

Do you get the POTs/dysautonomia thing too? Mine seems to be linked with diet.
Have you been diagnosed long?
Do you have other co-morbidities?

*gentle hugs*

I am 6'3" and I weigh 68kilos. So very marfanoid.

I am allergic to gluten, animal fats including full fat dairy, salycilites.

The reason I ask about children are because of the low chance of not delivering prematurally or other complications.

I dislocate almost anything from sleeping. It can be awful.

I have awful eyesight and also a malignant tumour on my eye stem as another rare complication.

I have disautonomia which gets worse when I don't exercise or eat the wrong foods.

I have been diagnosed for a few years.

I also have various co-morbidities due to ehler danlos and marfans and some unrelated. I think the worst string of luck is I have adhd but it hurts to move some days.

ah, yes you are very marfanoid. i am not thought to have marfans but i do present the body shape and some of the mechanical problems, i had a lot of problems and lengthy surgery on my jaw and face which never really worked properly.
but i understand there are a lot of further problems present with marfans syndrome.

i totally relate to dysautonomia worsening with not exercising eating the wrong things and i am still trying to get to the bottom of some of my own food and chemical sensitivities, i feel. i would like for my energy to be less erratic. i still work (just) but would like to ask for accomodations in the workplace, maybe go part time.

from what i have read, are some of the ways to treat marfans syndrome contraindicatory to how you would treat ehlers-danlos syndrome?
what kind of exercise are you able to do given the dislocations?
it must be so frustrating for you not to be able to do a lot.
i had to look up your location and found both the paleontology definition as well as the place. are you in Namibia where the zebras roam?
*gentle hugs*

I only work part time on a retail shop. The only accomodations I ask for is no sharing food and extra toilet breaks. I fond it easier for the doctor to just write a letter for ibs to justify this. Soon I will be working in the field and will have to have accomodations made. I can not sleep on the hard ground and need to take my own swag. I will need to have my own food ect.

I just treat everything as it comes up and don't even assign different conditions to a disorder. I have things like mitral valve prolapse in my heart which seems worse then a mild case due to my week muscles around my heart. Ect. Very frustrating but not much I can do.

For sports I do swimming, walking, hiking (no running, it would brobably kill me) and motorcycle driving. I also do light weights like carrying a bag in each arm and walking from the shops ect. People may not call this "exercise" but it the most stress I can put on my body.

I hail from the land down under.

I find the thing that affects me the most is my hypermobile back. It I am sitting in a chair, it hurts to sit up straight. I either have to slump forward so my elbows are on the surface in front or to the side, to lean on an object to keep upright. I usually eat laying down in bed or on the couch and sometimes if at others houses I need to excuse myself and lay on the floor as sitting is so painful.

I am glad to hear that as a paleontologist you still get to work in the field. It must be quite a physical job? Quite a cool one though

Liking your idea to treat everything as it comes and not assigning it to a disorder... i think i will try this with work accommodations too. I eat small and often so my desk drawer is stashed full of snackage. My main problems seem to be hauling my ass out of bed of morning and energy slump after lunchtime. I think my longer term goal is to get a job nearer to home (i spend more than 3 hours a day commuting), it all adds up to fatigue.

Thanks again for your ideas. As I say, I am still figuring out how to make changes/acoomodations to my life without becoming a hermit.

If you have any questions ect, feel free to message me. I am always around.

thanks again,
take care

I have type 1 Ehlers Danlos syndrome

From what I've seen, it seems to be rather common in autistic people. I don't know if I have it or not, but I am quite flexible (but not in the conventional ways) I can't do the splits, but if I hold a pole between both hands, extend my arms straight ahead, with elbows straightened, then I can swing my arms directly backwards. My brother took a video of me doing this, and you can see my joints moving weirdly in the sockets.

I am hypermobile as well which has made me have knees that are close friends (face each other) and means my elbows, knees, one shoulder, my jaw and the bit where my legs connect click and sometimes go out of place. Both my parents (mum hasn't been diagnosed but my therapist says she likely has it and I would not be surprised if my dad was on the spectrum either) and at least one sibling (diagnosed autistic) also have it. My stomach is sensitive but I don't know if it's linked because it's only been like that since my stress related GERD. However every now and again it decides to be really mean and I can't really process some foods well in anything but tiny amounts.