Update on Ehlers-Danlos Hypermobile Spine

Just a small ramble with an update about my daughters spinal issues. It looks like its increased which isnt that great but at least the hospital is great. She will now be seen by a difference Consultant who seems really nice and who has ordered an MRI just to check whats going on.

Category:

People & Blogs

Tags:

• Ehlers-Danlos
• Syndrome
• Hypermobility
• Spine
• Scoliosis
• Pelvis
• Eds
• pain
• in
• the
• connective
• tissue
• butt

[ticklebear4U]

sorry to hear this. physio is quite limited...i SHOULD know... simple massotherapy might help. or osteopathy. may be time to step away from traditional medecine. good luck!! BIGHUGZ

[Elfins]

The trouble is that nothing will stay in place so Osteopathy can be dangerous as they can manipulate and put in place but it wont stay and if they dont know about Eds, they could do more damage than good. I have almost come to the conclusion that somethings are just meant to be, and there is no making it better, its just about getting on with it, good, bad or indifferent..

hugz to you xxx

[DarkWaterfall]

Hi there... My thoughts are with you and your daughter. My pelvis is chronically subluxed in multiple places.... it's caused tilting in my spine and can be very painful. I really feel for your daughter. I am having a very difficult time finding someone to treat me. I hope you get the help you need.

[Elfins]

Hi, I am so sorry to hear you are suffering similarly to my daughter as I wouldnt wish that on anyone. I dispair of ever finding any thing that will help to be honest. Physio hasnt helped and if anything has made her worse as she didnt have these problems before the physio. We have now taken a more gentle approach to physio and have allowed her body some time to heal but as you know, its taking forever...

Take Care

[Minniver]

hugs to you and your family. Calming energy and beauty to you all.

[Elfins]

Thank you Minn, your words always seem to say just the right thing at the right time. Its so warming to know there are people like you in this crazy world of ours.

Blessings x

[Timb0NZ]

Do you know about hyaluronic acid? apparently you can get injections and they are good for joints cause it supports the collagen. Check this video watch?v=PefdHNnDuv4

[barefootgem615]

I can't believe that they're only doing an MRI now?!!! I would HIGHLY advise you to take her straight to an EDS specialist (if you can find one) & a SPINE SPECIALIST (surgeon&neurologist), rather than just going to some general practitioner! I don't mean to alarm you, but the spine is highly delicate & regulates EVERY FUNCTION in your body - especially since she's only 16! At her age, she may be able to heal well, but a spinal FUSION would be recommended for the subluxations, etc,

[kraizeeangel]

I wouldn't wish this condition on my worst enemy. Unfortunately, my child and I both have it. EDS truly is a crappy thing to have.

[Jos129]

I have EDS, I have the Classical type. I have problems with my skin and joints, and sometimes i get a really bad pain at the bottom of my back/spine, and then it feels like my back has moved back into place, but sometimes when that happens i get like a pinching feeling in my back, my arms and ankles sublux ( not sure how to spell it) and sometimes my jaw sort of comes out and then goes back into place. It's annoying going to the doctors and they have no clue what you're talking about.

[EDSGIRL021]

I am soo sorry she is going through this i really feel for her because i know what she is dealing with .. i am so sorry for you as well because i know its so hard for you and its the same way with my mom . i hope you all are doing ok ..

much love