Ot - Eds/cfs

[KPeveler]

Anyone out there have EDS? I just found out a sibling has it (very severely, poor thing) and it would explain a lot of my problems. I have also been diagnosed with CFS some years ago... just wondering if i was alone, or if this is a common combo!

 

[zumbergc]

Hi KPeveler,

I think there is someone around here who does have eds.
I had described my joint issues and someone here pointed eds out to me.

Can I be nosey and ask what type of doctor diagnosed your sibling.
I so hate my primary guy, as he is dismisive of all my joint pain.

Here are couple of links. The first one you have to pay to get to the discussion boards there. (i haven't been on that board for that reason) The second, message board is free. They both have info about eds.
I listed the hypermobile one too. It has a section in its discussion board about cross condition, like CFS, fibro etc.

http://www.ednf.org/medical/content/view/23/30/

http://www.ehlers-danlos.org

http://www.hypermobility.org/

I'd be interested to find out how they diagnose it.

Thanks,
Connie

 

[kandeebunny]

OOO OOOO It's me!!! I have EDS, CFS, RA, and peripheral neuropathy, as well as a bunch of other things.

I was diagnosed by a geneticist, my primary thought I had lyme. I have it severely as well. I am on Disability (I am 23 and mentally fully functional) I can work minimally so I do this for my sanity, but find any shift longer than 4 hours and I require a day to recover. Due to working retail for so many years I have fluid on the knees that cannot be removed and it sucks so I have to be very careful.

W@hich type does your sibling have? The catch with EDS is that while it is genetic it is not type specific, so if she has hypermobility type, her parent could have had another type, or you could have another type. It is more common in females due to the way the genetics of it work. I've done a lot of research on this and have taught my Dr's a LOT.

If you have questions please please please PM me, EDS in its own right is not very common, also I've found that it is often paired with CFS and the Arthritis and Peripheral Neutopathy can actually be caused by it.

Anyways like I said, PM me with any questions so I can know how to direct my answers.

Oh and there is a lot to considder with surgeries or pregnancies, which could become an issue.

Connie-
The process of diagnosis is measurements of hypermobility. They also measure places like your ears (my tell tale sign is that my ears do NOT curl over on top they are flat like elf ears) You have to have x out of x symptoms to be diagnosed. They can also preform a skin biopsy (which BITES as in general local anastetics do NOT work on people with EDS) which can show them a marker dependying on the type you have. My type however has no marker.

ETA: here Connie http://www.ednf.org/abouteds/index.php?option=com_content&task=view&id=29&Itemid=32

 

[Earstou]

I've talked about EDS here before and was tested for the hypermobility type. My doc (who also dismisses alot) doesn't think I have it, but he also didn't think I needed to have neck fusion surgery, which has relieved quite a bit of pain. Thankfully I have a good neurosurgeon.
I have Chiari (http://www.northshorelij.com/body.cfm?ID=6409) and the Chiari Institute in NY discovered a link to EDS.
I always try to get the word out about Chiari, because it took me 13 years to get diagnosed, and I don't want others to have to suffer needlessly like I did!!!!!!!!

 

[disneySD]

Hello all,


I have Vascular EDS inherited from MOM and Classical EDS inherited from DAD. NIH says I'm am the rarest of the rare they only know of a handful of cases like mine.

 

[AnnieDan_Artlover]

Hi!
Seems the thread is quite old, but since I'm not (meaning I'm new on the DISboards and disABILITIES), I just saw it...
As you maybe saw in another thread, I'm suffering from CFS and EDS type III... at least I'm sure about it...
I didn't receive the official diagnosis of the EDS III yet. Some drs give me the "hypermobility" diagnosis (just that, not BJHS nor hypermobility syndrome) or just "ligamentious hyperlaxity"... Which both are mainly just symptoms... but I learned hypermobility syndrome, which I do have, was synonymous with EDS type III... It's not written down, but if I say it out loud in front of the dr, he doesn't contradict me!
I've had it since birth... well of course it's been noticeable more and more through the years (though I didn't crawl like other babies : I did the front split and tugged myself that way!). I sprained many articulations over the years (many of them more than once)... in fact I don't have much articulations left "un-sprained". I've always been "the weak one" and laughed at. I used crutches many months total in my life and now have a cane. (and, because of the CFS/EDS III combination, will buy my first wheelchair in the coming months... and my first visit to WDW will be in it... not what I envisioned!)
With time passing and injuries adding, I now have ligament's tearing more easily and more often, and am hurting almost non-stop because of big and micro-injuries, and am starting having orteo-arthritis...
But not all my drs agree on that, of course.
Altough, now that I know where the injuries come from, I know what and what not to do, and I sprain less... even before the CFS, there was no more basketball, for example, and there are no more flip-flops, etc. And I had to stop dancing after 15 years... (that was the worst, by far)
But my last thorn ligament (still thorn, they never really mend, really), to my right wrist, happened while putting a vest on... Speaks volumes! (worst part is, I already had a cast -orthesis- for that wrist! To wear 24/7! But you still have to remove it some times... and it was during one of those 5 minutes without the cast that... I know, stupid life)


I had read about EDS before and didn't think it was me at all... until I heard about type III. Now that's me! But I don't think any of my drs will bother to do anything for me to have the official diagnosis : what will it change in my life? I'm already on disability because of CFS, I have (most) the treatments I need... a written down diagnosis won't change much... And since I pretty much agree with that, I won't fight with them.

So there you are : another one with EDS! (I may not have been dr diagnosed, but I do have enough symptoms on the list to obtain the diagnosis).