EDS without double jointedness?

[LisaH]

Hi there, I have autonomic problems- neurocardiogenic syncope/postural hypotension and self-diagnosed POTS (based on HR increase +30 to +70 from lying to standing). I had ruled out the possiblity of EDS as I don’t have the super flexible joints on examination but there are some things in my past medical history that I’m wondering whether there is still a possibilty of EDS as these things can be common in people with EDS. My relevant medical history includes- recurrent back pain/frequently putting my back out (last for weeks) and slipped disc on CT as a teenager (unknown cause), asthma (can be a problem with connective tissue), Osgood Schlatters disease as a child (still have bony prominences below knees), had rib pains as a young child, recurrent chostochondritis/ ? pleurisy and bronchitis, sciatica left leg, recurrent joint pains, both pregnancies I had a severe pain in right pelvic area- where unable to walk properly, sometimes when I have been sitting for a long time and get up I have to hobble as I can’t walk straight (like the joint seizes up/stiffens), still can put my back out easily just leaning forward in certain position, my jaw can go in and out of the joint, second pregnancy my uterus had stretched to paper thin (but previous caesarean) for reasons unknown by doctor- almost ruptured, toe joints click out and sore and stiff, worsening left eye kerataconus (affects collagen/cornea- stretched in eye), on MRI discs in neck are bulging, my brother has very noticeable double jointedness/flexibility and is pale and blue eyed like me and has suffered from night terrors as a child (possible autonomic history), irritable bowel syndrome in family members. Is there any possibility with this history of EDS? Thanks for your help, Lisa

[Barbara]

Hi,
It’s common not to have all of the traits of one classification of EDS. Many of us have features from another classification, like the vascular type, they seem to overlap. I have been diagnosed with EDS Type III but I don’t have much in the way of hypermobile joints either (other than my knees). I have to say and I don’t have stretchy skin but I do have soft skin and fragile skin, which splits, or breaks down very easily. I do have the velvety skin and also my veins are prominent across my chest (looks like a road map!). I have a minor problem with my mitral valve (and possible aortic insufficiency according to some old medical notes).

I have scoliosis (twisted back) to some degree, which seems common and have suffered various types of low back pain some due to rogue disks, the latest I think due to dural ectasia (coccyx pain) another common denominator according to The Driscoll Theory. I had varying degrees of sciatica, over the years. I have had varicous veins since a child too. recently read that many EDS’rs have a bit of an indent at the top of the nose, where the cartilage is not as prominent as the bone, I have that too.

I was always going over on my ankles and knees as a child and had a lot of sharp pain in my chest, between each rib when I tried to breath, it would last a little while then go off but it happened often. Does that sound like what you had ?

My mother, however, had more classic symptoms – a high palate, could touch her wrists with her thumbs, had a heart murmur and dropped arches (flat feet) so I knew there was a possibility I could have the underlying disorder.
Regards
Barbara
(UK)

[PalominoMorgan]

Not uncommon to have EDS and not be freakishly hypermobile. It is a mistake many novice docs make too.

That being said, you may be more hypermobile than you realize in some joints. I don’t look like a circus freak, but have had many “in the know” docs, such as Francomano, say I was pretty hypermobile. I looked up normal range of motions at one point. The best link was thru Livestrong. I was SHOCKED at how restrictive normal ranges of motion actually are.

[LisaH]

Thanks for your replies, I’m seeing an autonomic/endocrine specialist in a few weeks and will ask if I can get tested. I’ve also had mild scoliosis too-remember being given exercises in primary school to try and straighten my back out. It’s amazing reading the Driscoll theory as I’ve had nearly all these symptoms. I have started the antihistamines now for 3 weeks and I have improved significantly, so much better, thankyou Dr Diana! Feel like I am finally getting some answers after 4 years! The doctors look at you like you’re mad when you ask to be tested for mast cell disease and they barely know what POTS is, but I am just glad to find something that is finally making me feel a lot better!

[Author]

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