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Ehlers Danlos

So in my previous post, someone pointed out to me there is a condition called Ehlers Danlos. I was unaware of this before and have been googling ever since. Memories and "Ah ha" moments keep coming to me.

I have very flat feet.
I can touch my thumb to my wrist....pediatrician made me realize this as a child and told me I was "double jointed."
My shoulders used to somewhat slide out of place when stretching as a child. Very painful.
My knees, even very young, would always hurt and ache with changing weather.
My pelvis during pregnancy felt like it was literally separating and falling apart. VERY painful.
Almost ALL of my joints pop...all the time. Wrists, fingers, knees, back, ankles, toes, elbows, etc.
I can't even lie flat on my back because it feels like my pelvis is separating somewhat, and feels as if my SI joints are coming out of place.
My back feels as though it is in constant need of an adjustment. My upper back feels "stuck" quite a bit. Like I know it needs to pop and it's too high up for me to do it. Massage therapist even made a comment, "Wow, you really need an adjustment."
After pregnancy, chiropractor took an x-ray...said I have a minor scoliosis.
And a big kicker...I can stand on the top of my toes. I don't mean like a ballerina. I mean I can literally bend my toes under, and stand on the literal tops of them. Crazy trick I would always do for friends.
My mother is also very flexible, with bad joints.
All of this is just now hitting me. How common is Ehlers Danlos?
And even if that's not the case, I think it's obvious my problem stems from hypermobility.

So, needless to say, I have already made an appointment. I am going to see an orthopedic doctor next week. Not sure what other kind of doctor to see besides an ortho. So I will start there. I pray that he really listens to me and I am not just a patient number! I can't afford to hop around and see 5 different doctors. I am really interested to see what he has to say. Keeping fingers crossed!


  • I have EDS. To be honest an ortho will not do you much good in getting a diagnosis because it requires genetic testing. There are several types but type III does not test positive, it is based on a series of symptoms.

    There is no treatment for EDS. It is genetic and thusly is carried to every child born to a parent with EDS. That child will have a 50% chance of ending up with EDS. EDS can skip many generations which is pretty much my case. Although, my mother did have the symptoms as well but no one else in my family has had the orthopedic issues that I have.

    It is estimated that 1 in 10,000 have EDS. It is one of the most undiagnosed syndromes there is. Most doctors brush it off as hypermobility syndrome, which is something completely different. Some places say 1 in 5k have it which is likely more plausible because the gene is permanent in every single generation, it's either switched off or switched on.

    The key symptoms are soft velvety skins, tearing skin, cigar paper scars, and of course the hyper-mobility. There is a foundation with scads of information on EDS and I suggest you look into it. The type of EDS is important to know because there are 2 types that can in fact be fatal.

    Seeing a good geneticist and getting the proper diagnosis is going to be the only way to know if you in fact do have EDS and what type you have.

    Best of Luck
  • AllMetalAAllMetal Posts: 1,189
    edited 06/05/2013 - 5:11 PM
    and now I'm interested. Guess I'm going to start my google search. No, I can't do all the things like the first post lists, but I have always been very flexible, and something has to explain my spinal issues... I mean... seriously... I've never known anyone with the issues I have, not even on here (though some do have similar so I guess in the end the saying "everyone is different" holds true with spines). I also "supposedly" have very soft skin. I frequently shake hands with people and they comment on that. It's strange because I'm actually self conscious about my hands because I grew up a "farm girl" so to me I associate them with callouses like a farmers... Anyways, I'm certainly NOT saying I have this condition, but one thing is for certain, medicine doesn't have all the answers (yet?). So maybe I have something similar to this? I just hope I don't pass it to one of my own children. My spinal surgeon said unlikely because scoliosis (my "main" diagnosis) is usually passed from the father... but well... no one in my family has any spinal issues... even all 4 of my grandparents who were/are healthy 80 year olds... no spine issues... strange. Anyways, best of luck to you as you research and find an appropriate treatment for you, I'll be following this thread.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • Medicine does have the answers when it comes to EDS, unfortunately it is poor education of doctors that makes it appear to be a mysterious disease. EDS is a collagen disorder which is basically a defect in connective tissue. As mentioned, it can skip many generations it can also take on different degree's. Mine is severe but I have family members who present with mild symptoms.

    I can say if one had Vascular you'd probably know it. It is the most severe of all types and is or can be fatal. Someone with this type usually can see their veins through their skin as their skin appears to be thin. Uterine, artery and intestinal rupture is very common. This is the only type in which life expectancy can be shortened.

    There are 6 types of EDS. If you have one type someone else in your genetic line can not have a different type. EDS runs true to a bloodline.

    I did find one site that believes that 1 in 2,500 people do have EDS. Again, it is incredibly under-diagnosed because doctors are not educated in this area. I find myself education nearly every medical person I meet.

    I have been through 17 surgeries, the primary ones are a congenital hip displaysia experimental surgery, full hip replacement and 2 revisions.

    I have had 3 ACDF's, two which failed. I am fused from c5-c7. I am not fused from c3-c5, which was operated on on two separate occasions.

    I have had my ACL and PCL both reconstructed. Growth cartilage removed from my knee, cartilage repairs, rotator cuff surgeries, shoulder spur removals, tumors removed and that is just lightly touching the subject.

    I have thoracic scoliosis and sacroiliac (which is incredibly severe) scoliosis.

    I used to have very soft skin but it isn't as soft anymore. I am only 47. My skin tears and rips very easily and I can not use regular band aid's or medical tape, it must be made of paper or my skin will tear off. I scar very easily and have what is called tissue paper or cigar paper scars. They are wide and translucent. This is very apparent with my rotator cuff repair surgery and from the experimental hip replacement at age 8.

    I bruise very easily and my immune system is compromised.

    My joints sublex often and my jaw in particular dislocates frequently. The tips of my fingers have dislocated in the past while I was sleeping. I have to advise surgeons about the jaw dislocation because I always dislocate after anesthesia and it pretty much freaks people out to see me pull my jaw forward and slam it back in place. Certain foods like bagels, thick breads, muffins etc nearly always sublex my jaw and oftentimes can dislocate it.

    These are only a few of the problems I have as a result of EDS.

    No one in my family 4 generations back have the issues I do at all. Some, including my mother, used to sublex and have even dislocated joints such as knees.

    I have Type III or rather Hypermobility EDS. There is no genetic test for this, there are tests for all other types. What is really ironic though is that I do have nearly all the symptoms and many family members 2 generations back, of Classical. This actually may in fact be the type I do have, I have to actually go back and have the biopsy. Doctors never felt the need for it but I now question that. I also fit in the Arthrochalasia (Formerly EDS Type VII A&B) type, but am the only person who has had congenital hip dislocation.

    There is no cure for EDS. The only forms of treatment are generally bracing of digits and limbs that tend to dislocate frequently. Monitoring is important for those who have the Vascular type.

    The Ehlers Danlos National Foundation is an amazing foundation I came across when I was first diagnosed. I was dx'd 17 years ago. That goes to show how little doctors know about EDS. Doctors always had told me that I might have some sort of rare arthritis because my cartilage in the joints which have been operated on is as soft as mush. For me just knowing what I had was a huge relief.

    You can learn more from the foundation at www.ednf.org

    One thing I did lastly want to note, people with EDS often do not respond to local anesthetics such as lidocaine. When having dental work done or having sutures placed can be incredibly difficult because areas do not numb, sometimes it takes repeat injections of lidocaine (or like products) and sometimes it does not work at all. I can not have steriodal type injections because the lidocaine does not numb the area which means I feel everything if awake for such proceedure. When I do have them it must be under anesthesia.
  • I did do some of my on online research... and I do agree, this isn't what I "have"... I have so many of the symptoms of several of the types (so obviously, again... not EDS). It seems like you have been through a lot. I'm glad you know whats wrong, what causes it, and what can/can't be done. I do wish I had some of these same answers. I'm totally blessed, I have a wonderful life, but everyone just finds my spine and all the things associated with it confusing.... nothing "adds up" or "points to" any "normal" spine condition. We don't believe I was born with these issues as my family doctor (who I LOVED AND ADORED AND WAS TOTALLY WONDERFUL) never noted anything spine related at the time of my birth/toddler hood/ small child. My dance teacher always thought some things about me was "strange" but chalked it up to my fun/silly self and just thought I wasn't taking dance as "serious". When my 4th grade teacher called my parents over her concern my parents were FLOORED... My father at the time had been a middle school administrator for years and every year was involved in scoliosis screenings so was very formiliar with that, and had never "noticed" this about me until that night. Two days later had x-rays that just flabergasted the ortho surgeon in our small town. He called 4 hours away and spoke to someone at a child's hospital and managed to get me in the next week... again, more x-rays, and it was confirmed I had NOT started puberty at all, which tends to be more traditional of scoliosis to occur at the onset of puberty. That was in October, my parents requested we schedule surgery for the first of December so as they would have more time off with me, etc.... surgeons agreed... but by December they were shocked at how much worse my x-rays already were. anyways, no trauma, no family history dating back 4 generations on all sides... no one every had spine problems... (which in and of itself is quite remarkable)... anyways, its just a very complicated un explained situation.... but I'm fine. Praying all of my new work is fusing. I just think I do have some "condition" that probably hasn't even been identified yet by the medical community.

    Anyways, thanks for all of your info (and I have a friend's son that does have the vascular kind... he has had all sorts of tests on his aorta, etc. every so often,and their family believes that this was running in their family due to stories told about family members long since passed .... scary)
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • BonnitaBBonnita Posts: 13
    edited 06/07/2013 - 7:42 AM
    Unfortunately for me there are far more complications that I have than mentioned. My lumbar is totally trashed from L2-S1 with herniations, annular tears, etc. etc. Doctors will not operate as they believe the surgery would in fact fail causing greater problems. So here I sit in chronic pain in many regions.

    Finding the answer to what may be the issue is really key in dealing with it emotionally and physically. You might want to see a geneticist. Even though you have no family history of a condition doesn't mean it doesn't exist. My husband also has thoracic scoliosis that was dx'd when a kid but nothing was ever done about it. He too has very flexible joints but unlikely has EDS. I too was dx'd with mild scoliosis as well but it was prevented from progressing by re-creating a new hip for me.

    I spent a lot of years as a child in Shriners Hospital for Children and saw all types of cases of scoliosis at varying ages. I've also seen things much worse than that (not minimizing your issue at all). I remember one gal who didn't appear to have a bone in her leg at all. It was totally freaky. She couldn't walk. I was pretty young, maybe 8 back then so I didn't ask questions like I do now. I had heard stories of a girl during the 60's who spine failed for lack of a better term and they would suspend her in the air. Really bizzare things.

    Sometimes we're just a freak of nature and there is no real reason or diagnosis. Anything can happen while in the egg stage and during pregnancy. sometimes we never find the answers and must accept that. If your issues lie within just one area, be grateful as it's really frustrating when all your major joints have deteriorated and there's nothing you can do to stop it.

    For me my pain journey started as a young child. I don't ever recall a day without pain. Doctors began working to control my pain when I was probably 14ish.

    Like you the TSA does not like me. I have of course an artificial hip, a broken screw in my knee (the other was removed, it was from an ACL reconstruction), I have 3+ broken screws in my neck, 4 full screws and a plate. I am now awaiting surgery to be fused from C2-T2. There's a post about it in the cervical forum.

    I don't know what the future holds for me so I take each day as a blessing. I know there are others worse off than I am and that at least gives me hope. I can walk, I can do some of the things I enjoy (hand issues from cervical making it harder) and I have a really incredible husband and children and grandchildren. So yeah life could be worse.

    Best of luck to you in your search.
  • AllMetalAAllMetal Posts: 1,189
    edited 06/07/2013 - 2:57 PM
    Oh you have no idea how much my heart just smiled when I heard you mention the Shriners. My grandfather was... well honestly I can't remember but... "a leader" I guess as a Shriner. My parents were public educators. I started having tons of pain issues (but fortunately they would come and go, not constant, mostly behind my knees, in the crocks of my elbows, and in my spine (obviously) around the age of kindergarten... everyone told my parents it was "growing pains"..To this day I still get pains in those locations, sometimes really bad ones... and clearly I'm not growing! lol) .. When at age 9 scoliosis was diagnosed and I was sent to Scottish Rite in Atlanta to meet with the surgeon etc, we got a phone call at my house... I remember it... it was the Shriners... I remember my Dad just being overly astounded, they offered to bring my family down to their hospital, meet with their surgeons, cover all expenses etc.... My father told them that although their offer was extremely generous we would still be staying in Atlanta because they were offering (at the time) a new procedure he felt more confident with.... A few days later... another phone call.. they had actually contacted Scotish Rite... and were offering to fly not only my surgeon down, but his ENTIRE SURGICAL TEAM to do my surgery at their facility, again no cost to our family. Again, my family was overwhelmed with the generosity. After much deliberation, we did end up having the surgery and staying with Scottish Rites. Mainly because my mother's family lived in that area and could offer support while I was in the hospital, and because they excepted my parents insurance (which was a 80% 20% plan) and never billed for the 20%. I will ALWAYS ALWAYS ALWAYS have a soft spot for both the Shriner s and Scottish Rite. My father is now a member and my brother giving it serious consideration.

    And I see you mentioned the child you witness with out bones in her leg... my second year teaching I taught a young man who was born with no bones in either leg... they decided to amputate both legs as an infant and some how created him thigh 'nubs" to attach prosthesis too. So he grew up never knowing any difference. When I taught him he was just hitting puberty and sadly he was CONSTANTLY having to go for fittings and new legs almost every month because of the speed he was growing... which took time and they had to travel so he missed a lot of school. I have to say though, the students were always so supportive of him. Multiple times you'd see him take a spill in a crowded hallway and people would start yelling to each other to "get the leg" etc and you'd see two boys hoist him up while others helped but the legs back in place and again off they went. It was actually quite comical to watch, and the boy along with his classmates always did it with such wit and humor. It was actually very sweet and touching and most of all REWARDING to watch as a teacher, the acceptance there.

    And you are right about the genetics. I probably should go have some genetic testing done. My daughter is a SEVERE asthmatic... SEVERE.... (everyone says that about asthma... three weekend ago... well... I can't even type it much less say it out loud, but I can say... we almost suffered a huge tragedy. We were hospitalized etc... tonight she's looking so sweet in her bed... she is coughing up a storm (which is good for asthmatics, helps to keep the lungs clear), so we'll have to keep a sharp eye on her through the next few days/nights. Anyways, this wasn't the first time we have been hospitalized with her asthma... and they always ask the same questions... #1 smokers in the home? (never) #2 Pets in the home (no) #3 who (as in me or my husband) has the family history... NEITHER... but as it has been explained to us... a family history/genetics issues always starts with one... and so I guess she is the start. She has great doctors, great care, and we are hoping will grow out of the severity. So I guess I could be the "start" of something genetic as well, but I sincerely hope not.... I hope its just me and me alone and my kids don't ever have to go through any of it.

    Anyways, another long post, sorry... I do hope modern medicine continues to improve as well as your treatments and your pain. I can't imagine being so miserable all the time, I truly can't. Thanks for listening and responding and educating me.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • Shriners is an incredible hospital, at least it was back in the 70's where I spent most of my childhood from age 5 - 12. Back then insurance wasn't even needed. They paid for all my hospitalizations, and there were many, the three surgeries I had there as well. The procedure they did on my hip was very experimental and I remember every time a specialist or new doctor came around my mom had to lug me to Shriners and be paraded in from of the doctors who were amazed at what they had done for me. I sometimes felt like a side show freak.

    They have changed things now but it is still an incredible organization and hospital.

    Best of luck with your daughter. Who knows maybe her asthma is somehow related to your issues. You never know, stranger things have happened. I hope your daughter get's well soon and that you both can find the answers you seek
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