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Those With Eds/hypermobility.....


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Hi,

I'm kind of confused right now, because I have POTS and I'm hypermobile, my cardiologist wants me to see a rheumatologist to see if I have EDS (which is in our family). But I don't have joint pains or really any difficulty with my joints and I don't think I have particularly stretchy skin. Is it still possible to have EDS if your only pointers are the fact that you have POTS and are hypermobile?

Sorry, I hope that makes sense, I'm just really confused about it, my cardiologist (who is a POTS specialist) obviously thinks that I could have EDS, but family members and my local doctor don't really seem to think it's possible without the joint pain, stretchy skin, etc, and I don't want to go and see a specialist in EDS if there really isn't any chance I have it.

I'm not looking for someone on here to diagnose me (as I know that's against forum rules) I just want to know if it's possible that I could have EDS without all the symptoms.

Lyla

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I certainly can't hurt you to see someone who is knowledgeable about the various types of EDS--some don't have stretchy skin as an issue, but rather have problems more with veins and arteries.

I have a genetic collagen defect and DO have very mobile joints--my joint pain did not start until I was in my 40's.

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I have POTS and also EDS-hypermobility. I have many of the symptoms but am not so severe with the joint issues in that I don't dislocate things super easily. As Katybug stated, there are a lot of signs outside joint issues that go along with EDS.

A word of advice...most people I have talked to in the EDS community don't recommend a rheumatologist for being treated/diagnosed for EDS. Many have not had a very good experience. Usually a geneticist that is knowledgeable about EDS is really helpful. The ednf.org site has a great online forum with people that are really knowledgeable about EDS and good doctors for being diagnosed. I would definitely check it out. Good luck!

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Thanks for the responses everyone. I guess people can be hypermobile without any problems at all and they probably don't have EDS, but that the POTS is another pointer to the fact that it could be EDS? Maybe? I'm not even sure if that makes sense! :)

Also thanks for the website suggestions, I will definitely have a look at that.

This particular rheumatologist that I'm waiting to see, is actually an expert in EDS, so that should be okay.

Lyla

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Hi Lyla,

I don't consider myself to be that flexible, and I do not dislocate, but I was flexible enough (5/9 Beighton) and had other signs such as scoliosis, hernias, and skin differences to be diagnosed with JHS. My sister is extremely hypermobile (9/9 score) and has more problems with unstable joints than I do. My doctor said that sometimes JHS/EDS manifests itself differently between relatives. That's why doctors will also want to look at your family history.

Best wishes!

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I think there are 6 types of EDS and you can be mild, moderate or severe. I haven't had a diagnosis of EDS as yet, but I think I may have it although maybe mildly compared to some people. It wouldn't hurt to get checked out.

I had knee dislocations from childhood, spine problems and overflexing elbows which were all noted when I was younger. Several rheumatologists and orthopaedics specialists have also noted these areas but never said anything or pursued things.

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Thanks for the responses everyone. I guess people can be hypermobile without any problems at all and they probably don't have EDS, but that the POTS is another pointer to the fact that it could be EDS?

Definitely! The geneticist who diagnosed me said that all flexible people shouldn't be labeled with a disease. However, it is when you start having lots of issues (i.e. joint problems, POTS, etc) is when an EDS diagnosis should be considered.

For example, I have been diagnosed with EDS, POTS, small fiber neuropathy, migraines, probable endometriosis, acid reflux, and other stuff...these things are all quite common in EDS.

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I've been diagnosed with POTs and also EDS, small fibre/erythromelalgia by the same doctor but the EDS/small fibre aren't formal diagnoses in that they have been tested and confirmed. EDS is what the doctor believes/suspects underlies it all, he has had a lot of experience in seeing the 2 conditions together.

I've always been 'bendy', no dislocations, some joint problems but no more, I think, than other non bendy people. No-one has suggested seeing a rheumatologist for an EDS diagnosis and I haven't pursued it as I didn't think it would help/ make any difference to treatment. I have been thinking about it lately as it might put my mind more at rest and help me to believe that all this is just because of EDS and not anything else.

Hholmes - I've been looking at an EDS forum and really can see that these conditions do seem to go together!

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