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Eds Overview, Please


Turtle
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I'm doing searches, but started this thread at the recommendation of Arizona Girl to get personal accounts of EDS. I'm reading the medical stuff, but it isn't giving me a good idea of what it actually looks like in a particular person.

For example, can it be episodic? Can joint connectivity issues flair up then recede?

What does joint hypermobility actually look like/mean for an EDS patient? Does it mean double-jointed? Is this a required feature?

Some more human primers to go along with the medical literature would be really helpful!

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eds is constant never takes a day or a minute off. joints slide in and out of place constantly, I can scratch my whole back with one hand and no help ha ha the slightest wrong move wil sublux my ankles among other joints in my body, skin is very streatchy, thin and velvety. hope this helps some! kim

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Hey turtle as I've done this already myself, you can go to google then images and type eds and you will see the hypermobility pictures of eds patients. Yes eds almost always is hypermobile of some joints. I myself have hypermobility of my small joints, but don't have a diagnosis of eds. There is another syndrome called joint hypermobility syndrome as well.

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The thumb to forearm pic I can do with ease.

The pointer finger parallel to the arm I can do.

The pinky pulled back over 90 degrees I can do with ease.

All the fingers together parallel with the arm I get pretty far, but not close to parallel.

The "flying bird" hand looks identical to me.

The elbow and knee bending backwards I have none of.

I have relatives with double-jointedness, but I have none.

The skin elasticity I can't tell from the pictures, but I don't think mine is greater than normal. It definitely isn't pronounced if it is there at all.

The reference to prolapses as a sign of tissue instability is possible, depending on what that looks like.

The frequent sprains, breaks, and dislocations are there.

I have some relatives, young and old, who are far worse than me and identify as being "fragile." I identify more as clumsy and accident-prone. Ankles get the worst of the accidents.

I have constant subluxation of only one place.

The loose joint feeling, like the only thing holding two parts of my body together is the skin surrounding it, only happens episodically.

The fallen ankles and flat feet look just like me.

Pale skin I think I would be considered to have. I'm not sure. I know growing up, kids most often called my skin color "transparent" so I base it on that.

I'm not sure what thin skin means or how to assess it. I don't worry about wounds tearing the skin any more than I think others do if that's what it means.

I perceive wounds as healing very slowly. Even small wounds that thers have heal in a week take 1-3 months to heal for me. But I don't have complications, just slow healing.

I think I would be considered easy to bruise. They're typical bruises, but easy to get and all over. Removing bandaids cause bruising, for example. My legs usually look like an EDS-diagnosed woman I saw a pic of.

I don't know what else to say. There are so many things! What are the critical yes or no things I need to know?

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Tell all this to a rheumatologist that knows what to look for in EDS and with symptoms he will probably say yes, you have an issue. But, as was mentioned earlier - there are only certain types that a genetic test can pick up. If a doc is really familiar with EDS and what to look for - you may not need genetic test --unless he/she thinks you have the vascular type. Then you'd want to know. Keep in mind that many of us with HyperPOTS, EDS also have MCAS. There seems to be a sort of trilogy with us all. Whether this is an autoimmune response or it's connected to the Mast cell issue - who knows - what comes first. But, there seems to be a connection.

Issie

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Turtle, you just painted my picture! I have been wondering if I had EDS for some time. I don't have the bad brusing, but my 7 year old does, he is (pardon my term) circus freak bendy. My issues are mainly joints popping constantly, and ankles are terrible. Like you, many family members have signs/symptoms. Do you have any issues with ligaments or tendons? I'm nowhere near athletic, but my tendons tear and rupture spontaneously, I think its due to the collagen being defective... Skin is thin and stretcy too. I'll definitely be asking my rheumy about this, and my sons pediatrician. Keep us posted :-)

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Hey turtle! I also find that my joint laxity changes over time. In my case, it cycles with my hormonal cycles. I'm active in an online EDS support community, and many of the female members report similar changes.

If you're looking for more information on the Hypermobility type, I'd recommend reading this: http://www.ncbi.nlm.nih.gov/books/NBK1279/. It's very comprehensive!

I was diagnosed with EDS last spring, and have crossover symptoms of the hypermobility and classic types. Here is how it shows up in me:

  • Hypermobility: 5/9 Beighton score. I can do the thumb thing, the pinky thing, and the bending over thing. My brother and dad have elbows that bend back past 10 degrees, but I don't. I'm very flexible in some places, but I also have some areas that are very stiff, especially in my upper back and thighs. In those areas, my muscles have become knotty and hypertonic to stabilize the local joints. I get a lot of muscle cramps too. So, I can't even come close to doing a 180 degree split, but I can do the human pretzel thing. My shoulder blades are usually frozen, but I can apply sunscreen to my entire back anyway. Other signs are that I can touch my nose with my tongue and my thumbs bend backwards.

  • Instability: My joints are weak, and prone to injury and inflammation. I had repeated sprained ankles, feet, and knees as a kid. My sacroiliac joint is loose, so my pelvis is usually tilted to the front on one side. One of my ankles occasionally grinds, so I wear tight high top sneakers a lot of the time. Sometimes a shoulder will go out slightly and pinch a nerve, which causes me to lose feeling in my hands. I've only had one full dislocation though, and that was a pinky. I put it back on my own, haha. I had a couple bulging disks by the time I was in my late 20s. The laxity in my hands makes it impossible for me to hold a pencil properly.

  • Pain: I had excruciating "growing pains" as a kid. My back and neck have hurt constantly since I was a teenager. I used to experience awful delayed-onset muscle soreness when I worked out. Now, I'm a bit sore most of the time. It's worse around my period, in the cold, and when the weather changes. It doesn't respond to most medications.

  • Weird skin: Not too delicate, but kind of translucent. I don't usually scar badly, but I have a ton of stretchmarks and a few "cigarette paper" scars. My skin feels soft and squishy and is a bit loose in places. It's only slightly stretchier than normal.

  • Other stuff that supported my diagnosis: Bad eyesight (nearsighted with astigmatism), droopy eyelids, fatigue, allergies, stomach pain, nausea, "IBS, narrow palate, frequent cavities, anxiety, "floppy-looking" interatrial septum (on echocardiogram), clumsy, prolonged clotting time, single transverse palmar crease, sandal gap toe deformity. My family has a history of inner organ fragility (hernias, spontaneous pneumothorax, etc) but I've been lucky so far.

So, that's me! I want to mention that most rheumatologists aren't too EDS savvy. Many will diagnose people with benign joint hypermobility syndrome, even though the current thinking by EDS experts is that JHS and EDS Hypermobility are the same thing. Other times, they'll claim that EDS can't cause chronic pain/migraines/stomach problems/whatever, even though it absolutely can. A lot of people with EDS (including me) ultimately wind up at a geneticist for diagnosis, though very few of them provide ongoing care. There aren't nearly enough EDS experts out there.

Good luck! Please let me know if there are any particular resources or information you're looking for - I might be able to point you in the right direction.

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Just wondering if those with EDS have hyper pots?

I always wonder if I have it too. I can bend my thumbs back & touch the floor with my hands. I can dislocate my shoulder and "sub lax" my hip? And thumbs. My skin is stretchy, I have varicose veins, crowded teeth, narrow palate, astigmatism, nearsightedness, i tra-atrial septal aneurysm, patent foramen ovale and now POTs.

However I've never had a sprain, broken bone or easy bruising, or poor wound healing. I don't have joint pain etc.. Im not limited by any of these things ...., if pots didnt pop up, I would never consider this to be of any concern.. Know what I mean?

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