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Hypermobility Syndrome in adult

Hi, I've just been diagnosed at the age of 49 with Joint Hypermobility Syndrome and Dural Ectasia, both which may have been the cause of my 3 year herniated discs and chronic back pain. This has got more prevalent over the last year with my latest 'flare-up' lasting 7 months ...always have back pain, I consider a flare-up to involve sciatica too.
I knew I'd always been 'bendy' but it wasn't until a minor accident that my problems started.

Anyone in the same boat?


  • cchelmsccchelms Raleigh, NCPosts: 2

    Caroline, I am 52 and also have Ehlers Danlos Syndrome - Hypermobile Type (EDS-HM, formerly EDS Type 3), which most experts agree is the same thing as "Joint Hypermobility Syndrome." The bendy issues never bothered me much until my 30s. After having 3 kids and gaining some weight, my feet became increasingly painful and I had to get some prescription orthotics to maintain postural alignment. Fast forward to 2011, when (age 46) I irritated my piriformis muscle (bowling, of all things) and began to have sciatica. An MRI of my lumbar spine was, I was told, "clear." I went to physical therapy, which helped some but didn't resolve the sciatica. A cortisone injection resolved the sciatica and I was only bothered by it intermittently in the following years.

    Last September (2015), I had what was a very routine colonoscopy (my first). A week later, I had burning pain in my coccyx and sciatica on my left side (same side as before). I went back to the orthopedist/pain mgmt. doctor who resolved my sciatica before and we tried cortisone/lidocaine injections to the piriformis and coccyx. They didn't help and seemed to actually make my condition worse. In April 2016, I went to a different orthopedic practice with a spine specialty clinic. The spine specialist did X-rays and 2 MRIs (lumbar and bony pelvis). These showed clearly that I have severe dural ectasia and my lower lumbar discs and sacral spine have eroded quite a lot. I ordered a report from the previous MRI for comparison (which  I had never seen) and saw that the report indicated dural ectasia and disc erosion at that time. It was not followed up on AND not reported to me. I was furious.

    It could be that nothing could or would have been done about it, but it seems that knowing about it would have helped me avoid things that exacerbate  the condition - like lifting weights, running, etc. I would also have been wearing my custom orthotics regularly and not the "cute shoes" I had been wearing to work. Babying my back may have postponed the pain I'm living with now. I've been referred to another spine specialist (orthopedist and neurologist) at UNC. Hopefully I will get some answers there as to what can be done. I hope your care team is taking your JHS seriously, since it can complicate any surgical procedures or hospital stay. Please post an update!

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