:( bad day

[Rylanesmom]

Today stunk....
I know this really belongs in the EDS forum but my friends are in this forum so I am choosing to post here.
My 14 year old was diagnosed with EDS today and is being referred to children's hospital because of neck pain and hearing loss.
I knew my girls have it...still stinks...I pray it doesn't affect them like it has me yet m Ry has issues already.
They also would not sign sports physical for he to try out for soccer at high school.

[selmaS]

  For those with EDS...it will make ur muscles tighter as they constrict to hold u together bcuz the collagen is lax...this is y so many of us have early onset DDD and bulging disks....

I know this info belongs here, but I do hope u all also look at the info posted in the EDS group as well.....there r links to videos and info that all of us can benefit from.

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

[Rylanesmom]

*for some not one

[Rylanesmom]

ED'S affects the collagen which affects elasticity so for one it does mean stretch marks and lax skin which I do have both.  It does not always mean cranial instability we all are different.  They do check on X-rays.  Thank you for praying:)

My EDS wasn't extreme last year but certainly is now....it's ever changing.  I think largely because of the work I do.  I hope yours doesn't flare.  I do also have chiari decompressed in Feb which is why I wanted to post in here where my friends are:) chiari can cause tight neck muscles too so that wouldn't alone be a red flag...and pain and stress too.  My shoulders actually sit low due to EDS they don't stay where they go so drs who don't understand lecture on posture lol.  Everything hurts always but is magnified when you push on it.  So laying down applies pressure=hurts.  EDS patients are often misdiagnosed with fibro because all the pressure points hurt.

Have a great day ladies:)

[zygy2]

I am so sorry for all that you and your family are going through!  I feel the same way about finding answers for my daughter so she at least has some answers!  I am lucky that I don't think EDS is extreme but I am thinking it is a factor!  I am new to looking at EDS information and just had a couple  of questions based on your post here and although it is an EDS type of post I agree with you that it also belongs here, this community is wonderful and regardless of what all the Dr's think, it does appear that many with Chiari have EDS!!!  I am curious about tight neck muscles with instability, I ask because my neck is always so tight!  Even with PT, no matter what I always feel locked up tight and they are always telling me to "put my shoulders down"... I don't even know what they are talking about... that is just where my shoulders live!  I am also curious what hurts when you try to sleep?  I am having major pain when sleeping and I always thought sleep is where it is supposed to feel better.  It seems no matter what I do with my pillow and bed that I hurt at night (upper back, shoulders and even middle back sometimes).  I dread thinking my daughter will have to deal with this so I understand your sadness.  We are just starting the process to diagnose her.  It sounds like your knowledge is helping to make things easier! You should be very proud of yourself for finding the answers!!!!  Good job, stay strong!!! -zygy

[irislita]

Oh...so sorry to hear that must be hard for a mom.but in the end its good u r so careful and understand what  is going on with them.may i ask a strange question....do people with eds tend to have stretch marks?and does eds automatically mean craniocervical instability?is that obvious then on xrays or is this clear by having eds?sorry for so much questions.i am praying for ur family.ur children are so blessed with having a great mom.have a great day

[Rylanesmom]

I never could lay on my stomach pre op but can now.  (now know it affected csf flow) Since I have so much pain hubby said I can sleep on anything you can lay on:)

[selmaS]

  What is weird I have never been able to lay on my stomach.....but I feel better on my stomach on the floor of all places......

My bed is relatively new, and not what I would have picked but I share it with my DH...lol....

[Rylanesmom]

My recliner is shot to lol...my EDS kills me...hip bursitis I'm positive....couldn't lay down at all on old bed and read foam may be the answer so we went and tried out beds and bought the one that didn't hurt...in an ideal situation it would be the adjustable bed for the hilarious but laying on the bed is an improvement

[selmaS]

  I spent a lot of post op time in the recliner too....still spend my days in it....I really think I need a new one...lol....as it is not comfy....

Or it just may be me, I just can not get comfy newhere, the recliner, my bed....I do more pacing and one would expect to lose weight from that, but I have yet to see ne evidence..

[Rylanesmom]

I couldn't lay down was sleeping in a chairing am so thankful my bed doesn't hurt me anymore!

[selmaS]

  Mel, u got me Jonesing for either one of those....lol...my DD just gave me a new pillow and that is helping but not when I am on my side, my shoulders, and hips hurt so bad...
So either of those would be helpful and ever so nice....lol...

  

[Rylanesmom]

And for me seeing, pcp Fri, NL appt made for Oct and they are setting me up with NL opthomologist here.  I'm sure pcp will say see rheum for hip bursitis from EDS ... we shall see ... denial isn't working lol.  I am so thankful for memory foam bed and jacuzzi tub!  They both help:)

[Rylanesmom]

Yeah my daughter would still be saying what do you mean you're doing nothing for my neck???  It hurts!  She wasa getting mad at the you're ok take ibuprophin...she said it doesn't help! Momma bears got this one:)

[Rylanesmom]

I would gladly go first for them any day!  

[selmaS]

  Well as I have said to others, it is helpful that u understand and know ...other wise where would ur child be? Not that we all want to have something that our kids will have, but it helps that u have walked in her shoes.

Sad that they have to walk that walk as well...and I pray it is nothing like ur journey.

[selmaS]

  Well as I have said to others, it is helpful that u understand and know ...other wise where would ur child be? Not that we all want to have something that our kids will have, but it helps that u have walked in her shoes.

Sad that they have to walk that walk as well...and I pray it is nothing like ur journey.

[Rylanesmom]

Yeah I don't let them know I'm upset and I had told them I was positive they had it and that didn't mean they would ever face the challenges I have.  They are doing ok.  Ry should find out when she is seen at the children's hospital in the next 2 weeks.  On the upside our children's hospital is amazing and we may finally see someone who know something about EDS.  It was weird of coarse I knew more than the Dr...typical.  I told he that last year I discussed EDS with another Dr and we decided not to diagnose and treat symptoms.  At that ime we got orthotics.  Ry asked to switch to girl Dr so ground 0 today.  So I told her about her neck pain and popping and I was concerned it was cranial instability.  I also wanted to revisit hearing loss as its affecting her performing in competitive dramatics.  She couldnt get her med app to load EDS.  She told me her neck muscles were really tight and she thought I was muscular and referred us to ent.  I old her muscles would be tight if she was unstable and shared about my chiari and showerd her pseudo tumors on my hands.  She saw other daughter and I asked if it loaded yet and she said let me look to see if it says anything about neck.  She came in and had Ry show her how it pops and then asked me to show her some of the signs so we put on the circus show including demonstrating lax skin.  She said you're right she has it and I'm referring you to children's mercy.  I said I know...just worried because its affecting her so it's time to look further.  She said well I don't see that it affects ears.  I turned my iPad and showed her a bunch of articles showing it does and she said don't call ent I am referring you to children's for her ears too.  I'm thankful that I knew...sad for my girl...thankful I have great insurance and will get her what she needs!  I pray we never discover chiari in my girls to go along with the darn eds.

[selmaS]

  How are the girls taking it?All u can do is try to keep positive and give them other things to focus on.....I know it is not easy....

Hang in there <3

[Rylanesmom]

Thanks Selma...was talking about myself and my drs this morning.  I took my girls for well visit and sports physical and it got worse from there:(

[selmaS]

  Hi Mel, I saw ur mood and wondered what was going on.....I am sorry but it is best she not play now then play and it cause more issues.

Even though it makes sense it is still hard to deal with and I know that.

sending u and ur girls <3 and ((hugs))