How long since ur dx ?

[selmaS]

I was wondering how long u all are aware of ur EDS dx?

Mine was dx'd a yr ago in March and since it was secondary to another condition it was back burnered and I have not been treated for it.

If u have been treated...what types of treatments do u get?

[selmaS]

I heard about not using the bands, but when I was in PT prior to my dx that is what they had me using....lol....

I will try to get in the pool more , but it  is weather related as to when I can get in my sister's pool...lol...

Yrs ago I did have aqua PT and I loved it....wish I could afford it now : )

[auntissie]

No, it's not the only thing we can do.  But, it is one of the best things we can do.  It doesn't put pressure on our joints and it can help with cardio as well as tone.  I recently read somewhere not to use rubber bands either.  I don't have this figured out, yet either.  I know with my POTS, any thing I do has to be horizontal.  I have issues with my blood pressure and pulse (it has to do with the autonomic nervous system).

[selmaS]

IS swimming the only thing we can do?...and is that going to keep the muscles toned?

I was always bruised and slow to heal...no one even the drs checked me for nething and just said that is how u r....never giving the thought there could be something behind it.

[auntissie]

I've known for a few months, but suspected it for years.  I don't think there is much that can be done for it.  Depending on how bad you have it, you can get special braces for support.  Have to be careful with the type of exercise you do.  And be aware if there is vascular involvement, what to look for as far as ruptures go.  I do take a pain med and a muscle relxr.  It seems to help allot with the pain. Since I do have vascular involvement, I find that full body compression helps too.  It helps to hold the vessel tighter and I get less blood pooling.  I have less nausea, if I have my compression on.  Some people are in wheel chairs, because their muscle tone isn't good enough to hold joints in place.  I have to make sure I sleep perfectly straight, or my neck, back, shoulders, knees get out.  It's something you are born with, it's not something you all of a sudden get.  There is the genetic component there.  It explains why I was the clumsy kid, who was always spraining her ankle, dislocating her knees, breaking blood vessels, getting real bad nearsighted so fast as a kid, always having a bruise somewhere, hurting all the time.  It is suggested to keep muscle as toned as possible to hold joints in place.  One doctor told me that we are always tight and spasmed because of tensing to hold things in place.  It feels like a type of arthritis and we do tend to get osteoarthritis easier.  From research I've read, we're not supposed to do weight lifting or pressing exercises with our hands, because it pushes the joints out and causes pain and arthritis.  They suggest other things, like swimming for example.