Re: OT-Hypermobility, EDS?

[Guest guest]

Yes, my joints are very " lax " as I call them. You can move them

around pretty easily, though I'm sure that it is not quite as much as

yours since I've never been dx'd with EDS. My children also have

very lax joints and right now, both of them have ankle pronation

because their joints are sooo loose.

From time to time, I've talked this over with Owens because her

daughter also had the pronated ankles I think. Anyhow, probably all

of this is related to problems with sulfur chemistry. If you want to

ask her, she's on the sulfurstories board and if you can't find it,

let me know and I'll post the homepage.

merrywbee@...

W

> My daughter and I likely have mercury and lead poisoning issues and

> once we start chelation we'll see how large a problem we have, but

we

> also have a hereditary collagen deficiency called Ehlers-Danlos

> Syndrome which causes hypermobility of the joints among other

> things. Most of the people who post on the EDNF

[Guest guest]

, you should check out the Ehlers-Danlos Website... I was not diagnosed

until I was 32 after I fell down a flight of stairs and injured my back,

knees, and ankles and physical therapy couldn\'t get my joints stable again.

There are blood tests for a few of the more unusual types of EDS, but the

most common types are diagnosed based on a scale of hypermobility in certain

joints (both thumbs, both knees, both elbows, fingers and ability to put

palms down on the ground flat when standing with feet together) and

existence of certain symptoms. You should check it out... I will look up

Owens on the sulfur stories board...

Dawn Schaller

------------ this is a forwarded message -----------

From: merrywbee maryandphilip@...

Subject: [ ] Re: OT-Hypermobility, EDS?

Date Sent: 01/22/04 11:35 am

----------------=== message body ===----------------

Yes, my joints are very \ " lax\ " as I call them.  You can move them

around pretty easily, though I\'m sure that it is not quite as much as

yours since I\'ve never been dx\'d with EDS.  My children also have

very lax joints and right now, both of them have ankle pronation

because their joints are sooo loose. 

>From time to time, I\'ve talked this over with Owens because her

daughter also had the pronated ankles I think.  Anyhow, probably all

of this is related to problems with sulfur chemistry.  If you want to

ask her, she\'s on the sulfurstories board and if you can\'t find it,

let me know and I\'ll post the homepage.

merrywbee@...

W

> My daughter and I likely have mercury and lead poisoning issues and

> once we start chelation we\'ll see how large a problem we have, but

we

> also have a hereditary collagen deficiency called Ehlers-Danlos

> Syndrome which causes hypermobility of the joints among other

> things.  Most of the people who post on the EDNF

======================================================

[Guest guest]

Hi Dawn,

Not only can I touch the floor with my palms, I can almost do it with

my elbows. I always thought it was from doing yoga. Could you explain

hypermobility of the thumbs and elbows? Regarding knees, I tore my ACL

in karate. During physical therapy after recon surgery, the PT said that

I have at least 5 degrees of hyperextension in my knees. He told me a

lot of people have it, but it is not good for me to do it deliberately.

Could I possibly have EDS? I always thought flexibility was a good

thing, and I try to work on getting higher kicks and doing splits. What

are the other symptoms?

Thanks,

Bernadette

Message: 21

Date: Thu, 22 Jan 2004 13:04:54 -0800

From: dawn@...

Subject: Fwd: Re: OT-Hypermobility, EDS?

, you should check out the Ehlers-Danlos Website... I was not

diagnosed

until I was 32 after I fell down a flight of stairs and injured my

back,

knees, and ankles and physical therapy couldn\'t get my joints stable

again.

There are blood tests for a few of the more unusual types of EDS, but

the

most common types are diagnosed based on a scale of hypermobility in

certain

joints (both thumbs, both knees, both elbows, fingers and ability to

put

palms down on the ground flat when standing with feet together) and

existence of certain symptoms. You should check it out... I will look

up

Owens on the sulfur stories board...

Dawn Schaller

[Guest guest]

Bernadette,

The other checks for EDS are the ability to extend joints (with

effort from pushing with your hand) beyond normal ranges. The first

is to push all 4 fingers of each hand backwards (as a group) to or

beyond 90 degrees. Most people cannot extend past 5-10 degrees

without extreme pain. One point for each hand. Then, for the thumbs,

it is the ability to touch the tip of the thumb to the forearm. For

the knees it is 10 degree backward extension. Some EDSers have this

20 degrees or worse, but most are 5 to 10 degrees (sometimes this

starts as 5-10 and progresses to more as you injure yourself over

time). Then the ability to bend each elbow beyond 10 degrees. Then

the last, as I stated was the ability to put the palms on the floor

when you do a toe touch with feet together. Normal people bend from

L4/L5/S1 vertebrae in their back, we EDS's don't bend from there, we

bend from the hip and that is why we can put our palms on the floor.

There is a difference of opinion, even among doctors, of how high a

score determines Hypermobility, but most consider 4 or 5 out of 9 as

a positive diagnosis. These checks are called the " Beighton Scale of

Hypermobility " . You can check this website for a more in depth look

at Hypermobility:

http://www.ptjournal.org/June99/public/v79n6p591.cfm . Or you can

check out the Ehlers-Danlos National Foundation (EDNF) at

http://www.ednf.org . There are many other references on the internet

for EDS or hypermobility, just Google it...

Many EDSers have mild scoliosis, mild to severe joint pain, digestive

issues, skin issues like weird scars (cigarette paper scars-really

thin, see through, stretched scars, keloids) " stretchy skin " ,

chammois (ps?) like soft skin, nasty stretch marks that are wider and

thinner and take far longer than " normal " to fade from purple to skin

color, mitral valve prolapse, migraines, depression, problems

sleeping with pain waking them up at night, sleep apnea, chronic

fatigue syndrome, frequent joint dislocations or subluxations that

may or may not be painful, prematurity is not uncommon for babies

born to mothers with the disorder, especially if their child is also

affected (with no cause for early labor found usually, but sometimes

premature rupture of membranes is the cause), the following after

pregnancy/labor - rectal prolapse, uterine prolapse, and bladder

prolapse, " blue sclera " in the eyes, and for the worst type, type 4

or Vascular type, symptoms include aneurisms of arteries/veins in the

brain, the aorta, intestines, or uterus (if pregnant). There are

many more symptoms. Not all of these affect everyone because some

traits are indicative of one type of EDS, while not affecting other

types. Most people who have EDS are never diagnosed. Many are

written off by doctors as hypochondriacs because although they have

tremendous joint pain and instability, x-rays look normal, there is

no definitive test for it, and they can't figure it out. It cannot

be " cured " and usually is progressive (does not affect lifespan

except in the case of Type 4/Vascular type), and since they can't

figure out how to help you, they are not interested in treating you

for this... Also, a firm diagnosis of EDS on your medical forms may

preclude you from obtaining health insurance, so they are not hot on

diagnosing it (which is a benefit to us there, but they should still

treat you as if they have diagnosed it as EDS). Another interesting

site is : http://www.ctds.info/index.html . It has to do with

nutritional treatments for connective tissue disease and it is tied

in with GFCF and autistic/ADHD type diets...

Dawn Schaller

> Hi Dawn,

>

> Not only can I touch the floor with my palms, I can almost do it

with

> my elbows. I always thought it was from doing yoga. Could you

explain

> hypermobility of the thumbs and elbows? Regarding knees, I tore my

ACL

> in karate. During physical therapy after recon surgery, the PT said

that

> I have at least 5 degrees of hyperextension in my knees. He told me

a

> lot of people have it, but it is not good for me to do it

deliberately.

> Could I possibly have EDS? I always thought flexibility was a good

> thing, and I try to work on getting higher kicks and doing splits.

What

> are the other symptoms?

>

> Thanks,

> Bernadette

>

>

> Message: 21

> Date: Thu, 22 Jan 2004 13:04:54 -0800

> From: dawn@e...

> Subject: Fwd: Re: OT-Hypermobility, EDS?

>

> , you should check out the Ehlers-Danlos Website... I was not

> diagnosed

> until I was 32 after I fell down a flight of stairs and injured my

> back,

> knees, and ankles and physical therapy couldn\'t get my joints

stable

> again.

> There are blood tests for a few of the more unusual types of EDS,

but

> the

> most common types are diagnosed based on a scale of hypermobility in

> certain

> joints (both thumbs, both knees, both elbows, fingers and ability to

> put

> palms down on the ground flat when standing with feet together) and

> existence of certain symptoms. You should check it out... I will

look

> up

> Owens on the sulfur stories board...

>

> Dawn Schaller

[Guest guest]

Bernadette, I found another website that had diagrams showing

hypermobility. Here it is...

http://www.orthop.washington.edu/arthritis/types/ehlersdanlos/03

There is more information on other pages from that site...

Dawn Schaller

> > Hi Dawn,

> >

> > Not only can I touch the floor with my palms, I can almost do it

> with

> > my elbows. I always thought it was from doing yoga. Could you

> explain

> > hypermobility of the thumbs and elbows? Regarding knees, I tore

my

> ACL

> > in karate. During physical therapy after recon surgery, the PT

said

> that

> > I have at least 5 degrees of hyperextension in my knees. He told

me

> a

> > lot of people have it, but it is not good for me to do it

> deliberately.

> > Could I possibly have EDS? I always thought flexibility was a good

> > thing, and I try to work on getting higher kicks and doing

splits.

> What

> > are the other symptoms?

> >

> > Thanks,

> > Bernadette

> >

> >

> > Message: 21

> > Date: Thu, 22 Jan 2004 13:04:54 -0800

> > From: dawn@e...

> > Subject: Fwd: Re: OT-Hypermobility, EDS?

> >

> > , you should check out the Ehlers-Danlos Website... I was not

> > diagnosed

> > until I was 32 after I fell down a flight of stairs and injured my

> > back,

> > knees, and ankles and physical therapy couldn\'t get my joints

> stable

> > again.

> > There are blood tests for a few of the more unusual types of EDS,

> but

> > the

> > most common types are diagnosed based on a scale of hypermobility

in

> > certain

> > joints (both thumbs, both knees, both elbows, fingers and ability

to

> > put

> > palms down on the ground flat when standing with feet together)

and

> > existence of certain symptoms. You should check it out... I will

> look

> > up

> > Owens on the sulfur stories board...

> >

> > Dawn Schaller