Hypermobile pelvis caused Scheuermann... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Hypermobile pelvis caused Scheuermanns kyphosis and lordosis!

Annalouk profile image
3 Replies

Hi everyone,

Has anyone experienced this? I only have a few mild hypermobile joints. Have suffered back pain and loads of other symptoms for 9 years now. They are now telling me the Scheuermanns kyphosis in my thoracic spine and hyperlordosis in my lower back has been caused by my hypermobile pelvis. I also have schmorl's nodules, bulging discs and DDD. I have loads of joints pains and we are still looking at uctd and i also have fibro so nobody can tell me which condition is causing which of my pains for sure. I am seeing a spinal surgeon but before I do i just want to make sure they have got it right this time....after years of letting me down and changing their minds on my diagnoses!

Any insight would be much appreciated! Thanks.

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Annalouk profile image
Annalouk
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cyberbarn profile image
cyberbarn

have they looked at the possibility of you having one of the more rare types of EDS? Such as this one? ehlers-danlos.org/informati...

There was a paper recently that showed that the kyphoscoliosis didn't have to be early on set and progressive. They did a genetic test on someone who didn't fit that description but they still had the same underlying genetic difference. So people can present differently with these things and still have the same underlying genetic differences as others that fit the textbook description.

This makes it really hard for medics to diagnose sometimes, which ends up with a lot of frustration for them as well as the patients.

There are several different types of EDS but many people only think in terms of the most 'popular' one, hypermobile.

Fibromyalgia is a diagnoses of exclusion, that means that they have to exclude other possible causes before they can diagnose you with Fibro. So it is possible that you do have a diagnosable condition causing your hypermobility and pain, but because it hasn't been diagnosed yet, they have called it fibro.

Good luck with the surgeons, I hope you get some answers.

Pamlupuszebra profile image
Pamlupuszebra in reply to cyberbarn

I have a very rare type of Ehlers-Danlos but you have to meet the full criteria for a rare type.

GillyGangGong profile image
GillyGangGong in reply to Pamlupuszebra

Hi there what’s the rare type x

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