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EDS question


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I have hEDS - I live in the UK though so have no experience of the consultant you mention.  When I was diagnosed I was 38 and had been told for years my symptoms were due to fibromyalgia.  I had never heard of hEDS (there is no real family history - only a great-grandmother who had a shoulder which dislocated daily) and only got diagnosed because the cardiologist who diagnosed me with POTS took one look at my hypermobile wrists and fingers and asked me who I saw for hEDS.  I score 8/9 on the Beighton test (my hamstrings have shortened too much to get my hands flat on the floor although I could do this easily in my teens and early twenties).  I don't tend to have many full dislocations but I used to have a lot of what I now know are subluxations - I have considerably reduced the number of joints that sublux through a regular programme of physio exercises.

Any questions about symptoms/diagnosis feel free to ask.

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I also have hypermobile EDS but have not gone to any specialists (diagnosed by my Dysautonomia doctor), because I haven't heard that there are any effective treatments other than physical therapy and otherwise strengthening muscles. I have had prolotherapy on my knees but having it done on all my lax joints is impractical and it has to be repeated every so often. I am trying the Cusack protocol though it is too early to assess how effective it is. 

Good luck finding help.

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