Heyy

Hi!
Since I'm new here... I guess I should introduce myself.
My name is Bethany and I am sixteen. I was recently diagnosed with hypermobile and classical EDS.
I also have Reflex Sympathetic Dystrophy, Fibro, Chronic Fatigue, and a lot of the typical connective tissue quirks (Mitral Valve Prolapse, Spina
Bifida Occulta, ostepenia/perosis, exotropia...).
I am im a wheelchair, paralzyed in both legs...Primarily from nerve
damage due the RSD (although my genetecist thinks I may have a
spinal cord problem as well- I don't know for sure yet, though).

Okay so I guess I should clarify what exactly RSD is. It's a really
confusing disease and not enough research has been done on it.
RSD is a neurovascular condition. Blood vessels become swollen and
limit blood supply to muscles so the muscles in the affected limb
become very weak. The vascular constriction causes severe
hypersensetivity (severe burning pain from even light stimulus).
In rare cases (like mine), major nerve damage is involved.
In very rare cases, it affects organs and stuff, too.

-Bethany <333

[SunsetParadise19]

I am SO glad you found us Bethany!!! Welcome to EDSkids!! Hope you like it here as much as I do!

[stacekins]

Welcome to EDSkids. I'm glad that your found us.

[ReineDeLaSeine14]

Welcome!!!

Hey did you know there is a condition called Tethered Cord Syndrome that comes with EDS and SBO...it means your spinal cord is attached the the canal instead of floating free. I have it and it has caused a Chiari Malformation as well.

I'm not paralyzed but I do have leg weakness and my left side of my body is weaker even though i'm left handed...i also have a brain abnormality which can be contributing to this.

I have neuropathy too...for a while i thought it could be RSD but my Lyrica's been helping pretty nicely so probably not.

I'm happy to hear you don't have an autoimmune disease...I have one and perhaps more and my flare is making me miserable LOL Cross my everything this doesn't happen to you too!!!!

I'm a mod and we seem to have a lot in common...feel free to chat with me anytime!!!

Hey!
Thankfully, I tested negative for TCS!
My genetecist is a little bit concerned about my spinal cord getting bruised or sprained because my back is hypermobile. I have to get more testing down the road for that. He didn't think it was urgent so he's going to order the tests later.
Yeah, nerve pain is pretty bad. I can see how it could be confused with RSD pain. I'm glad Lyrica is helping you. I tried Lyrica but I broke out in blisters- precisely in the same place that I had shingles when I was five.

Just curious... How did you get diagnosed with everything that you have?

-Bethany

Hi! And welcome. For some reason I read that the topic of your message was 'Heavy', even thought it was Heey.. Maybe I should check my vision.

I've also been in wheelchair. I used it for years but nowadays I can walk on my own, mostly. Can I ask, have you always had RSD?

[Katherine]

heyy, welcome

[ReineDeLaSeine14]

I saw a geneticist here at Yale and then went to an EDS specialist in Baltimore

I was diagnosed with RSD six years ago although I've had symptoms for even longer than that. I had an auto-immune reaction to a tetanus shot when I was thirteen and that triggered a massive RSD flare... I have been in a wheelchair since then.

Roosa-
May I ask... why were you in a wheelchair?

-Bethany

[xxBrittany]

Hello Bethany,
I am very happy to have you join us here at EDSkids.
If there is anything I can help you with let me know.
My name is Brittany and I am one of the administrators here. My best friend Gwen and I are co-owners of this website and formed it about 2-3 years ago. If you ever need anything or have any questions please don't hesitate to ask!
I can't wait to chat with you and see you around the boards!

Hope all is well!