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yuliya

Ehlers-Danlos Vs. Normal Flexibility

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What is the connection with Ehlers-Danlos and POTS? I seem to have noticed that a lot of people on here mention they have been diagnosed with both. What is the symptoms of Ehlers-Danlos? From what I can tell its the flexibility, but what is the difference between good normal flexibility and abnormal. I am aware that there are several different types, but I am specifically thinking of the one that has to do with flexibility. Any help would be appreciated.

Thanks :)

Yuliya

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There are several good websites if you google ehlers-danlos or you can google Joint hypermobility syndrome. There is a lot of debate right now about whether EDS-Type 3 is the same thing as Joint Hypermobility syndrome. You can also google "Beighton score" which is one of the tests they use to assess joint hypermobility. The various websites have some pictures so you can see what skin laxity is, etc.

No one knows for sure what the connection is, but depending on the study it seems that about 60-80% of people with joint hyper mobility/EDS have dysautonomia.

If you look at the main DINET webpage under the links there are studies listed about the connection with EDS and POTS etc.

Good luck! :)

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It has been explained to me that people with EDS who have poor vascular tone have blood pooling, and in turn this causes orthostatic intolerance. You do not have to have "vascular EDS" to have poor vascular tone.

I have severe blood pooling, and delayed drops in BP. When my BP drops it's very low! Gravity is not my friend!

Maxine :0)

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I have POTS and hypermobility with tons of back issues (scoliosis, bulging discs, stenosis, etc.) and a lot of other misc. health problems (just dx'd with a Mast Cell Activation Disorder).....Several doctors have suggested I might have Ehlers-Danlos syndrome. I feel like all I do is go to doctors and I'm wondering how much to prioritize getting tested for this....will a dx change my treatment for POTS and significantly alter other things I should / shouldn't do or take, medically speaking? Any advice would be much appreciated....

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