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1633714 tn?1300029111

Ehlers Danlos

does anyone who uses this have ehlers danlos syndrome?
7 Responses
Avatar universal
yes, I do. i just signed up on here. was looking for info about amniotic fliud, havin trouble with my preganancy. saw a post from a lady who has E.D.S. and tried to send a messege, couldn`t without signing up. How r ya? It`s kinda rare to find someone with this condition.
Avatar universal
I do.  A few years back, I had ankle surgery and was diagosed then.  Then, this year, my back was hurting bad again and started to see a chiropractor who stated I had this - the hypermobility EI DS.  I was happy to have a second diagnosis plus it was explaining my back issue.  Very recently, I was reading up on it and found that club foot and easy bruising and heredity is an issue with EDS.  Well, I was born with club foot - one foot only.  I was always clumbsy as a child according to my parents and bruised easy then and still do.  My father had weak ankles and the military wouldn't take him.  He taught me how to bend my legs behind my head like he did to entertain family as I was "double jointed" like he was.  Side show type of comedy and yes, it has come in handy.  But, now, at 48 years old, the pains are coming in.  Lumbar back pain; hip pain; joint pain; easy bruising.  (I also had trigger finger a couple years back and had to get a cortisone shot.)  I've lived with this my entire life, am RELIEVED to know it's due to SOMETHING and not just me whining.  The chiropractor didn't help.  I just take Aleve and deal with it.  There ARE some days I'd like to just curl up and cry when it comes to low back and hip pain and I'm climbing stairs.  It hurts so bad.  My upper spine is also not perfectly straight.  Just a touch crooked.  My spine at my neck is straight and not curved as it should be.  My daughter has signs of this as well.  I've broken several bones in the last few years from falls prior to my ankle surgery.  I've just been dealing with this as I'm not sure there's anything you can do about it to permanently stop being in some form of pain.,
Avatar universal
Coming in handy meaning able to bend to get stuff out of a normal reach or turn, etc.  
3201229 tn?1345366195
I have it. Super elastic and velvet like skin easily torn/bruised, hyper mobility, etc. Being male it has always been a bit difficult for others to understand why I was always excused from physical activities in school. It led me to be somewhat ostracized until I found myself later in life. Now in my Mid-Twenties I have found that this only effects my physical being and never how I feel or choose to live.
Avatar universal
I have Ehlers Danlos type 3. I have chronic pain, crushing rib syndrome, IBS, migraine, four curves in my spine , 11 bowel obstructions, osteoporosis, arthritis, ribs popping out of place, bulging disc, insomnia, ptsd and because of this opiate epidemic had my pain management taken away a year ago. I am devastated. I found a doctor in Maryland who specializes in EDS as no one in my area knows what it is but she is booked up for next 3 and half years. What are we to do?  My quality of life has not been Good. Five minutes in the yard with my only grandchild and I am done for rest of the day. Oh anxiety and depression.  Wonder y?
620923 tn?1452919248
Hi,,,many in the Chiari forum have EDS as it is not rare and there are many of us with this condition...we do have a EDS group here on MedHelp.......
20851987 tn?1537566034
I also have EDS Hypermobility Type.  It is not nearly as rare as the other types of EDS are.  It also is not likely to kill you, as some of the other types are.  You just can hurt so much that sometimes you wish you were dead!  Not really, but that is the cliche'.  The clue to living a better life is to get physical therapy and to stick to it.  When something is hurting, see a PT to learn what you are doing wrong.  We tend to kind of collapse into bad postures and positions for walking and moving.  Our muscles get weak because our bodies figure out ways of moving that don't use many muscles.  Our floppiness really works against us.  We need regular muscle building (light weight work) to keep our limbs in alignment.  That keeps us from hurting ourselves.  Those of us who were not diagnosed until our 50s or later have already ruined our joints.  Young people can now learn early what to do to prevent this.  There is also better surgery out there for those who need it for things like dislocating kneecaps.  I had one done 40 years ago that they no longer do because it never worked well.  They do better repair now.

And no sideshow tricks!  When we do those, we loosen our joints further.  It is best if we act like we have normal joints, then do exercises to try to make them normal.  Sometimes something as little as a bit of kinesio tape will help to influence a joint to move correctly.
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