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Rare but Common Source of Spine Pain

lcarpenterlcarpenter Posts: 86
edited 01/17/2020 - 11:21 AM in Arthritis, Osteoarthritis Forum

So we’ve now had a second opinion confirming my son’s Joint Hypermobility Syndrome diagnosis. As a typical mother, I’ve been reading and researching ever since he received the diagnosis. Some consider it a milder form of the Ehlers Danlos syndrome. Some consider it a separate condition. Either way, from what I’ve read... the bottom line is that there is a problem with the way collagen is produced and this makes tendons too lax/flexible. This affects the spine when the tendons that are supposed to be holding the spine in place are not doing that well enough. The spine moves too much and can cause arthritis and just generally keep the soft tissues and ligaments around the spine irritated. Joints moving out of place are common for this condition. It is reported to be a rare disorder but one that commonly causes significant back pain when present. It often takes decades for someone to be diagnosed because most docs aren’t very familiar with it. I always thought being super flexible was a good thing. Turns out not so much! Now to find out what to do about it!  More research!!! 



  • I am glad he has the diagnosis, at least you can now know why he is hurting so bad, now to find a treatment that works, I hope that comes quickly.


  • Thanks, Chip!

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  • memerainboltmemerainbolt IndianaPosts: 4,718


    It's a good feeling that at least you know why he is hurting. I have always admired the fact that you never gave up and kept researching, and still are. And we are learning too. Thank you for sharing what all you have found. Hopefully, with the proper treatment and meds, it will work.

    Both of you take care, keep us posted.

  • Thank you, Sandra. I just know that this forum really has helped so much. From the information, posts, and personal comments, I’ve learned so much and felt so much encouragement. Thank you so much for the support!!! 

    I wasn’t sure where exactly to post this information since joint hypermobility can affect different people in such different ways. It’s probably the cause of my son’s arthritis but it can cause pain in lots of different ways. So I think maybe I should have shared this information in the chronic pain section. Administrators, feel free to move it if you feel it might fit better elsewhere  

    I’ve read that it often takes decades for someone with joint hypermobility or Ehlers Danlos to be diagnosed. Because they are zebras and not horses (they are rare and not common) lol. We waited 12 years. My hope is that by sharing this info it might point someone else in the right direction.  I would have never dreamed that my son had a disorder like this, but it explains so much! I’ll keep y’all posted. 

  • memerainboltmemerainbolt IndianaPosts: 4,718

    Just keep posting here, it is getting a lot views. Members are reading but not replying but that's a good thing.

    We appreciate you sharing this journey with all of us. 

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