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Can Someone Explain Eds Symptoms?


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Hi all

I am wondering about EDS symptoms and what people suffer with them? The reason I ask is over the last several years it has been mentioned to me many times by doctors and nurses that I have very odd veins and skin. Just yesterday I started with my saline infusions and it took 3 nurses almost 2 hours to access my veins. They said it had nothing to do with hydration but was because a) I have very few veins in my hands or arms B) they are extremely tiny and collapse when they are barely touched and they roll away? c) the nurse mentioned I have extremely soft and transclucent skin. I remember reading somewhere that the soft shiny skin can be a sign of EDS? I am not very dexterous nor double jointed etc....but I do know there are different classes of EDS....anyone have any input? I would appreciate your thoughts?

Thanks

Bren

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Bren,

We've been having some discussions lately on EDS. Do a search and you should pull up a lot of info. It does sound like it could be one of your issues. If I'm remembering right, don't you have MCAS and had/have endometrosis? It seems there is a connection between all of this and us with POTS. There's like a trilogy type thing.

Issie

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I have EDS and have small veins as well. I once took a picture where they had stuck me eight times before finding a vein. I had bruises all up and down my arms from where they'd gone right through them. And yeah, I have the roly-poly veins. Phlebotomists say, "but I just had it!" and "it moved away from me!" These are things that you won't find in any medical journal though, just a kind of word of mouth trait that many EDSers notice they share.

Also, sometimes you aren't a good judge of your own hypermobility. If you've grown up thinking you're normal, you tend to think that others are the same as you, when they aren't. I didn't think I was vey flexible, but when I was evaluated by a geneticist, I scored 7/9 on the Beighton scale where the average person scores 2.

Soft and translucent skin and both traits of several types of EDS. If you're curious, it can't hurt to get evaluated, especially if you're close to a good geneticist. I had to get a diagnosis because my joint pain was out of control and whenever I tried to get help, doctors would tell me POTS doesn't cause joint pain and mock the idea that my joints were sliding around in the socket. The only way to get treatment was to officialize my diagnosis.

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I guess I should have commented on the veins. Very, very fragile for me. I actually have them do blood draws from a major vein in one arm - I have all my blood draws and IV's in this one vein. It is so scarred with scar tissue it has made it stay in place and firmer. If it ever goes I'm in BIGGGGG trouble. I've had to use this one spot for years now. I won't even let them attempt to try my hands or any where else - I'll be one massive bruise. If you grab my hand too firmly or just touch me too hard - I'm bruised. Mine roll and break.

Issie

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http://www.inspire.com/groups/ehlers-danlos-national-foundation/

I think the most reliable resource on the web is the Ehlers Danlos National Foundation - or EDNF.org... Perhaps you've visited the website? It's extensive and has so so much you could spend hours on there depending on which areas of interest you are currently looking into - from Conference notes (yes once a year all the experts from 'round the country and the world converge for the patients benefit) to hints on handling difficult doctors to all the different types -- just a lot there. Plus they have an online community - forum - through Inspire. It's lively and you can ask there all your questions if you haven't already.

Dr. Tinkle wrote a book called the Joint Hypermobility Handbook which is an excellent one volume book about generalized joint hypermobility and/or Ehlers Danlos Syndrome ... he's the geneticist from Ohio ... A very nice man who many people eventually trek to see in person to get diagnosed and all their questions answered - even though he's at Cincinnati Childrens Hospital - he will see and diagnose and treat adults too at his EDS clinic there. If you prefer a woman doctor - Clare Francomano is the other one many go to see - she's over in Baltimore ... a brilliant lovely lady who also knows her stuff. Dr. Tinkle has a precurser book to that one - that's out of print now - but you can still probably get it on Amazon or other sites. As it's smaller it's cheaper

Yes out of all the different 6 types of EDS I believe ... each persons story is unique within a grouping.... So no two hypermobile type EDS'ers will have the same story exactly... Some have skin findings - others maybe just barely or seemingly not at all.... Same with Classic and on and on - there is some crossover of symptoms --- and even the hypermobile type of it has each person with a different "bendiness" story - some dislocate daily - some never.... some have chronic pain - some don't.... some have systemic involvement (after all collagen and connective tissue is everywhere in the body) - and others not so much. For example many have GI issues - like Gerd, slow food transport etc... others have varicose veins, others vasomotor instability and POTS .... some have eye problems -- the list goes on and on as to which body systems in each person 'acts up' ... and when even. So you end up often enough with a medical binder 45million pages long with all your records before you ever even find out you have EDS! Dr. Tinkle is making a binder available as a fund raiser EDS awareness thing to help patients organize their medical work ... It's a fantastic idea!

http://www.indiegogo.com/projects/83374?c=home

The above is the link - you can watch the UTube video of Dr. Tinkle speaking about EDS a little bit and the need for a concise summary page to show your doctors etc...

Anyway - it really takes a geneticist to give you the 'real deal' diagnosis that the medical community will accept as 'real' - outside of that - a few doctors - very few seem to know about this - but when they do - you've got a real blessing at hand... It is said to effect mainly women to about 80 to 90 percent of 'adults' - and it's said about 2-3% of the population - so it's definitely out there!

Hope the resources I've mentioned help....

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Thanks guys for all the great input!!! something to maybe review with my auto dr when I see him in the summer :) Issie...I have had issues with endo and likely have MCAS we are still working through the testing. In Canada its almost nonexistent.....probably due to so many cuts to OHIP and its such a new and emerging illness....interesting that you mention they can be a trilogy....the plot deepens lol!

Bren

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