Jhs/eds Questions

[katrina13]

Hi, again-- so Dr. Grubb diagnosed joint hypermobility syndrome. He was lovely, but I get so freaked out at dr.'s appointments, I never think to ask important questions. I can't find anything on this-- is JHS something that is progressive? It's gotten worse throughout my life already, but is it likely to continue getting worse as I get older? Are there particular problems to watch for?

Thank you again for your help!

[Chaos]

I don't think that joint hypermobility itself gets worse. In fact as you age, you may tend to get less hypermobile. However, you may tend to get more painful as the joints get worn out from being used inappropriately. Because you don't have the normal "limits" on how far your joints go, they tend to take a lot more wear and tear than "normal" joints do. Also the soft tissue around them gets used abnormally so it also tends to hurt more and be injured more easily.

There are lots of sources for information on JHS on the web. Also a book called Issues and Management of Joint Hypermobility by Brad Tinkle MD, Ph.D is a small easy to read basic resource.

There are lots of other aspects of your constitution that may be associated with the JHS...like a tendency to IBS or migraines or osteoporosis or jaw problems etc so it's good to be aware of how things may interconnect.

There is a lot of controversy right now as to whether JHS is the same as EDS III (aka EDS HM) so you can research under that name as well. Since there isn't a genetic marker yet for either JHS or EDS HM some docs say they are the same and some say not.

Another good source of info is EDNF.org

Best Wishes!

[katrina13]

Thank you, Chaos!