Eds

[sstephan]

Hi,

I was reading about EDS and had a few questions for those of you have been diagnosed. I know that it often goes hand in hand with POTS. I bruise very easily and often have patches of bruising all over my arms and legs for no reason. I also have muscle/joint problems. My joints pop all over the place. If I try and exercise now, I end up very very sore. It is not the type of pain you get from sore muscles after working out. It is an achy feeling and happens after any kind of exertion. I also wake up with facial pain and neck pain every morning and have trouble standing from the floor due to my knees. My glands are sore off and on. However, I most certainly am not very flexible and my facial features are not really small. My eyes are very very big and open. Could this possible be EDS? Are there any tests for this?

Thank you for any insight anyone can provide. I have read the previous post on EDS.

Susan

[MightyMouse]

Exercise intolerance is a symptom of ANS problems as well as chronic fatigue. Bruising can be a sign of anemia or other health issues. Please take a spin over to the EDS website run by EDNF. The address is http://www.ednf.org

Here are the different types--the most common being types 1, 2 and 3. 1 & 2 are now lumped together and called classical type. Type 3 is now called hypermbolity type.

http://www.ednf.org/abouteds/index.php?opt...3&Itemid=31

Here is how the diagnosis is made

http://www.ednf.org/abouteds/index.php?opt...9&Itemid=32

With the most common EDS types, folks aren't necessarilly intolerant of exercise, but rather may be prone to dislocation and/or severe bruising. Joints making noise isn't the same as being hypermobile--cracking and popping noises can be normal. For me, I've dislocated my jaw yawning, eating, talking. I've partially dislocated my hips and knees, dislocated toes and fingers. My spine is hypermobile.

I have HEDS. I have permanent bruises on the backs of my thighs from sitting in a chair. The bruises come from simple pressure that wouldn't injure a normal person's skin. I have several keloids (collagen filled scars). In my youth, I could turn the top portion of my body completely backward while my lower half stayed in place. I could lie on the floor, flip my feet over my head and make my knee caps touch the floor just above my shoulders. At age 41, I can still do a full split with my legs front and back. I can bend all my fingers backward more than 90 degrees with no pain--my little fingers can be bent backward to the point of being parrallel to the back of my hand. I should have joined Circe du Soliel.

My mom as CEDS (classical). She has horrible atrophic scars, the velvet skin that is hyperextensible. She has poor wound healing, and early onset of arthritic joint changes. We both have significant scoliosis, which is also common in EDS. My two sisters have minor CEDS signs (this discussion came up before, they probably have partial genetic penetrance of the gene, and I have full expression), mostly with the keloids being a problem with ever scar. Keloids aren't that common in caucasians--they're very common in darker skinned people.

Not sure if this helps or not, but do read up--accurate info gives you power.

Nina

[Guest dionna]

i have the same problems as you! all of my joints pop and click now matter how i move. standing up from the floor can be a painful challenge and so can things like opening a bottle, jar, or can. plus i have a lot of swelling in my joints, especially fingers and it makes them hard to open all the way and when i do they shake and don't they are still bent in some form or fashion. i don't know how to describe what i am sayng but they look crooked to the side or something. i am anemic so perhaps that explains my bruising, but the joints? even my jaw. they diagnosed me with TMJ, but if they want to do that what about my knees, elbows, shoulders, hips, spine, fingers, toes, wrist, ankles, and whatever else? i have to drop a lot of things when my elbows "get stuck" cause i can't move them in the direction i need to. no i am not flexible either. i do have that double reflex thing though. i don't know if that means anything but i thought id throw it out there. i have a lot of neck pain and back pain. my face swells up at night and i wake up looking like i was beat or something... just without the black and blue or blood (except from my chapped lips). the small facial features? i am proportionate i do believe. i am very small of a person. i look like i am maybe 15 and i am turning 21 in October. i have full lips, a pug nose, small ears, and i guess average eyes. i have really long lashes so... that helps my eyes a lot. my eyes are open but they are slightly set back in my head. so i don't know i have posted about it before but i haven't seen a doctor yet. i hope you find out what is wrong and let us know okay. take care of yourself.

dionna

[kortnei]

I have the cigarette paper and fish mouth scars. I am 33 and I can turn each foot 180 degrees (seperately of course or I would fall). I can pull my fingers back over 90 degrees. I can sit on the floor with both knees flat to the floor and lay flat on my back. I can stick my tongue out and touch my nose with it. I can cup both hands behind my back (like you are in handcuffs) and then extend my arms above my head. I too bruise from sitting on chairs that are too hard.

I can't bend over and touch the floor with my palms flat though...go figure

I have yet to be typed but I am banking that I have the same as Mighty Mouse. My uncle was a wrestler in high school and college and was "unpinnable" because he could dislocate his shoulders to get out of any pin. My dad recently had his shoulder bone replace from so many dislocations. Neither one was diagnosed with EDS, but I am going to gander that is where the gene came from. Seems like I maybe have full expression of it too...I will find out sometime in September.

Take good care.

[MightyMouse]

That's funny that you can't touch the floor with your palms-- I can not only do that, but I can actually reach more than 12 inches past my toes! However, unlike you, I can't do the arms behind back and over the head. My shoulders have been more stable than most of my other joints.

My mom has those fish mouth scars and areas of skin that look like cigarrette paper between "fish lips".

A typically HEDS issue also is severe spasms of the smaller muscle groups. With the larger groups/ligaments being too loose, the smaller groups work doubly hard to try to keep the body from flying apart at the joints. I have hundreds of trigger points (a knotted muscle that feels like a rock) in my back, arms, hips, knees, wrists, even hands.

Since Classical and HEDS are both transmitted via autosomal dominance- meaning you only need a single gene, and it overides the normal genes you've gotten from your other parent. You can have full or partial penetrance of the gene, which explains the variety of severity in presentation.

Nina

[Radha]

what are fish mouth scars? and can you get eds without any other family member having any symptoms? thanks for any info,

radha

[MightyMouse]

Rahda, you would know a fish mouth scar if you saw one--it's exactly like it sounds. Instead of the margins of a wound like an incision sticking to each other and making a relatively straight line, the edges pull apart, leaving raised edges all the way around (the lips part), with the center having very thin skin and often having thin/fine stripes like cigarrette paper - it almost looks like giant stretch marks.

I'm including a link-- photos of EDS patient's skin are near the bottom of the page. If you look at the one arm where they are pulling the skin on the elbow, you'll see a fish mouth scar on the forearm. Also, you'll see thenm on the photo of the knees.

http://www.mediscan.co.uk/cfm/resultssearc...mage&log=nk

Nina

[kortnei]

Nina,

I am 5 foot 9 inches tall so I hope that I can't touch the floor with my palms flat.

I thought I was doing good to be able to touch my toes with 3 bulged disks in my lower back.

I am gonna have to work on this.

Take care,

Kortnei