RE: Periods of looser joints

[Guest guest]

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted

I learned to walk on my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles attached

in the wrong spots in our legs! I did years of exercise to try to strecth

those out, but still am not comfortable wearing any flat shoes nor walking

flatfooted when barefoot!

Liza

[Guest guest]

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted

I learned to walk on my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles attached

in the wrong spots in our legs! I did years of exercise to try to strecth

those out, but still am not comfortable wearing any flat shoes nor walking

flatfooted when barefoot!

Liza

[Guest guest]

Hi Nomentanus:

Interesting name, what is the translations

My observational guess from watching my daughter (now 17) from when she

picked up speed walking at 14 -15 mos. was that her ligaments were so

lax that in order to be able to propel her body wt forward with some

speed she had to tighten the leg muscles substantially. She would also

lean forward approx. 15 degrees from the perpendicular in order to use

her centre of gravity to propel herself forward. It was Dr. Grubb who

gave me the answer to the leaning forward, I did not figure this out.

She certainly had exceedingly tight leg and buttock muscles, right up to

the top of the hip bones. At 10 and 11 there was not an ounce of fat on

her and her muscles were firmer than a professional NHL hockey player.

My nephew was one and it was amazing the tightness in their back,

shoulder and arm muscles when I danced with them. She required an

Achilles tendon lengthening at 11 and was in bilateral casts for 6-8

weeks. During that time and subsequently she has loosened up

tremendously. She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted. Had to learn new

sense of balance and how to use muscles differently.

This was when she first started having knee pain. Despite the mild 10

degree scoliosis she still holds her back amazingly straight and I think

those back muscles still compensate for the more lax ligaments. Her

hips now sublux periodically and many joint pop often. She thinks she

felt better overall and had better stamina when muscles were tight and

she would like to work on improving their strength. Possibly this is

just from what was familiar to her. Just interesting how this can be

different for many. Possibly the natural need to be very active in

youth requires the tighter muscles to keep pace with other kids....or

producing more growth hormone at that time contributes enables the

tighter muscles.

Bernie

Periods of looser joints

I've had a couple of periods when my joints became much looser too, and

was awfully glad of it.

It's very possible for EDSers to be stiffer than regular humans because

muscles are tightened clamping the joints together in an attempt to

prevent injury. If you've been less active, this may change.

I find I'm better off psychologically and with regard to both pain and

injury if I stay much looser and constantly snap my joints back into

alignment and also substitute extra careful attention when moving for

the protection offered by stiffness.

At least one of those periods when my joints became much looser was

something I worked hard to create by learning to safely snap joints

(starting with my legs) and using meditation and relaxing into the pain

to cause muscles to release. I still do this as needed to keep loose.

For what that's worth.

> good seeing you back here, Gordon! but am so sorry to learn

" things " are accelerating now.

> I've had two times when joints became a lot looser in a short time.

> 1st time in my late 20's-early 30's. then from 40-52 I was pretty

stable. but when 52 hit---present I'm biting the dust all over again.

I've wondered why this happens??

> my upper extremities especially have been effected.

>

> I needed a change from vicodin too after being on it a number of

years. the new meds have been working well for the past 4 years.

> good luck and hope to see you around here now that you're back.

> cindyh

> wisc.

> ~~

> From: Mookie

> My nmaes Gordon cheek. I am 36 and have the hypermobile type.

[Guest guest]

In a message dated 8/27/2004 3:31:53 PM Pacific Standard Time,

bfhalkett@... writes:

>>>>>Hi Liza:

Interesting, someone else who walked on their toes. Her heal never

flattened out as would normally occur and it was immensely difficult to

find shoes that would stay on other than high top Rebok type sports

shoes that we literally were tying on to her ankle to keep them on. Her

foot particularly was very narrow...and the ankle quite lax.>>>>

My feet are AAA at the heels, but flatten out at the front, so shoes are a

nightmare too! Currently the only ones I can wear is one sandal style from SAS

that adjusts both front and at the ankle, plus a special custom pair of

Z-Coils in a 5 narrow. I remember wearing multiple pairs of socks to be able to

fit

the regulation KEDS tennis shoes back in school gym.

She has a bunion and one foot that is almost a full size larger than the

other. As a result one shoe is always very loose fitting and she still

has to wear lace ups....size 11 no less. My left foot is also 1/2 size

larger than the right. Problem with lace-up shoes for me tho is my feet are

sensitive to heat/sweat and break out if they don't have constant air

circulation.

So even in the rain, I'm usually wearing my sandals.

Purchasing shoes upsets her totally as she can never wear slip on shoes,

one is always way too loose and won't stay on. It is the bane of her

life that she can never get any dressy type shoes even for a special

events. Sandals are next to impossible to buy. Large sizes always seem

so wide. We tried everything, orthotics for a time even.

The toe walking made life very difficult at school as she was teased and

always stood with one leg and knee tightly pressed up against the other,

as though she needed to go to the bathroom, but I realise this was to

tense the muscles and keep herself upright. She did not have a stable

base so others could push her out of lines and such very easily. There

were an immense number of falls in childhood. Really tough. Do you

remember any of this? Mirrors my childhood, posture etc exactly! Nowdays I

walk with both thighs even pressed together so my knees support each other & my

loose hip doesn't turn to the inside. Try doing that with crutches, LOL. I

think I had a new sprained ankle twice a month all the way thru my school

years. My daughter also falls all the time...off the stage in the auditorium

once

even! She hates the stairs at school, especially when people bump into her.

She still walks on her toes some, and one foot points outward to the

side a fair bit. When she is toe walking I know that her blood pressure

will be lower even than usual so it also had to do with keeping the

muscles tight to prevent pooling in the lower limbs. She prefers to keep

shoes on at all times in the house as they help to compress the blood

vessels in her feet and reduce pooling in the vessels. Also give

stability as ankles are NOT stable to this day. I used to like to walk

barefoot, but now my heel needs the support of a short hell, so I have to put on

my

shoes to go to the bathroom at night even. While working and reaching for

stuff in my kitchen (I'm short anyways), I find myself on my toes every minute

and have to force myself to walk with my heel hitting the floor first.

High heals are an impossibility as ankle is too unstable. Had better

ankle stability before surgery when she toe walked. So if you are still

toe walking and have reasonable ankle stability don't fret about it.

The most painful aspect was that when we identified all the difficulties

created doctors would never clarify the lax ligaments as the problem and

with her muscles so tight it was not obvious that lax ligaments were the

problem. Doctors were deaf to the problems and would not help re

solutions. Actually I did wear heels as a teen and they were much like

walking barefoot on my toes. But when I had my son, I couldn't tolerate the

pressure on my toes after that when in heels. Yet I can still walk barefoot on

toes??? Doctors never spotted my real issues either, tho I remember them

advising

my mother to make me wear " sensible shoes " as a child. So I had those awful

clunky black & white oxfords while other girls got the cuter Janes.

It would have saved me so much anxiety and help me problem solve if they

had just been honest and clarified the too elastic ligaments. Basic

elastic ankle supports could have helped or ankle bracing. Amazingly,

she had no ankle or bone pain with walking, though there was lots of

burning pain in her toes first thing in the morning when she had her

feet over the side of the bed. Too painful to tolerate the touch of

socks and by times she would go without them. There were some very,

very difficult times during which we were given no understanding as to

the cause so of course I was not able to advocate adequately for her at

school. Do you recall any of this or did your mother identify these

difficulties? I mainly had the constant ankle sprains...even once broke a

bone in the side of my right foot & they assumed it was a usual sprain for a

couple weeks before bothering to xray it. Later after my son was born and the

feet swelled and hurt more, a smart doctor took a set of standing xrays. My

right ankle was completely dislocated, the leg bone resting on a bone spur on

the

outside right of the ankle joint. The joint has worn so much it is

triangular instead of round. The docs wanted to fuse both ankles, but I tried

chiropractic instead. She got the bones realigned & I've done as much exercise

as

possible to keep the muscles supporting that joint. It doesn't bend as well as

the left, but it is still very functional and not too painful. However, the

years on walking on it all wrong probably contributed to my hip wear on that

side.

How old are you and do you have ankle pain now after walking? If your

ankles are stable enough to wear regular shoes you are very luck indeed. I'm

48, currently the ankle is OK to walk upon, but the knee/hip are non-weight

bearing until they replace the hip. Just one style of the SAS sandals are all I

wear, as they have a slight lift to the back and adjustable straps over the

toes and across the ankle. I have a couple " dressy " pairs of low heels with

ankle straps also, but if we're at an event where I have to wear them, I do a

lot of sitting .

Liza

Bernie>>>>

[Guest guest]

In a message dated 8/27/2004 3:31:53 PM Pacific Standard Time,

bfhalkett@... writes:

>>>>>Hi Liza:

Interesting, someone else who walked on their toes. Her heal never

flattened out as would normally occur and it was immensely difficult to

find shoes that would stay on other than high top Rebok type sports

shoes that we literally were tying on to her ankle to keep them on. Her

foot particularly was very narrow...and the ankle quite lax.>>>>

My feet are AAA at the heels, but flatten out at the front, so shoes are a

nightmare too! Currently the only ones I can wear is one sandal style from SAS

that adjusts both front and at the ankle, plus a special custom pair of

Z-Coils in a 5 narrow. I remember wearing multiple pairs of socks to be able to

fit

the regulation KEDS tennis shoes back in school gym.

She has a bunion and one foot that is almost a full size larger than the

other. As a result one shoe is always very loose fitting and she still

has to wear lace ups....size 11 no less. My left foot is also 1/2 size

larger than the right. Problem with lace-up shoes for me tho is my feet are

sensitive to heat/sweat and break out if they don't have constant air

circulation.

So even in the rain, I'm usually wearing my sandals.

Purchasing shoes upsets her totally as she can never wear slip on shoes,

one is always way too loose and won't stay on. It is the bane of her

life that she can never get any dressy type shoes even for a special

events. Sandals are next to impossible to buy. Large sizes always seem

so wide. We tried everything, orthotics for a time even.

The toe walking made life very difficult at school as she was teased and

always stood with one leg and knee tightly pressed up against the other,

as though she needed to go to the bathroom, but I realise this was to

tense the muscles and keep herself upright. She did not have a stable

base so others could push her out of lines and such very easily. There

were an immense number of falls in childhood. Really tough. Do you

remember any of this? Mirrors my childhood, posture etc exactly! Nowdays I

walk with both thighs even pressed together so my knees support each other & my

loose hip doesn't turn to the inside. Try doing that with crutches, LOL. I

think I had a new sprained ankle twice a month all the way thru my school

years. My daughter also falls all the time...off the stage in the auditorium

once

even! She hates the stairs at school, especially when people bump into her.

She still walks on her toes some, and one foot points outward to the

side a fair bit. When she is toe walking I know that her blood pressure

will be lower even than usual so it also had to do with keeping the

muscles tight to prevent pooling in the lower limbs. She prefers to keep

shoes on at all times in the house as they help to compress the blood

vessels in her feet and reduce pooling in the vessels. Also give

stability as ankles are NOT stable to this day. I used to like to walk

barefoot, but now my heel needs the support of a short hell, so I have to put on

my

shoes to go to the bathroom at night even. While working and reaching for

stuff in my kitchen (I'm short anyways), I find myself on my toes every minute

and have to force myself to walk with my heel hitting the floor first.

High heals are an impossibility as ankle is too unstable. Had better

ankle stability before surgery when she toe walked. So if you are still

toe walking and have reasonable ankle stability don't fret about it.

The most painful aspect was that when we identified all the difficulties

created doctors would never clarify the lax ligaments as the problem and

with her muscles so tight it was not obvious that lax ligaments were the

problem. Doctors were deaf to the problems and would not help re

solutions. Actually I did wear heels as a teen and they were much like

walking barefoot on my toes. But when I had my son, I couldn't tolerate the

pressure on my toes after that when in heels. Yet I can still walk barefoot on

toes??? Doctors never spotted my real issues either, tho I remember them

advising

my mother to make me wear " sensible shoes " as a child. So I had those awful

clunky black & white oxfords while other girls got the cuter Janes.

It would have saved me so much anxiety and help me problem solve if they

had just been honest and clarified the too elastic ligaments. Basic

elastic ankle supports could have helped or ankle bracing. Amazingly,

she had no ankle or bone pain with walking, though there was lots of

burning pain in her toes first thing in the morning when she had her

feet over the side of the bed. Too painful to tolerate the touch of

socks and by times she would go without them. There were some very,

very difficult times during which we were given no understanding as to

the cause so of course I was not able to advocate adequately for her at

school. Do you recall any of this or did your mother identify these

difficulties? I mainly had the constant ankle sprains...even once broke a

bone in the side of my right foot & they assumed it was a usual sprain for a

couple weeks before bothering to xray it. Later after my son was born and the

feet swelled and hurt more, a smart doctor took a set of standing xrays. My

right ankle was completely dislocated, the leg bone resting on a bone spur on

the

outside right of the ankle joint. The joint has worn so much it is

triangular instead of round. The docs wanted to fuse both ankles, but I tried

chiropractic instead. She got the bones realigned & I've done as much exercise

as

possible to keep the muscles supporting that joint. It doesn't bend as well as

the left, but it is still very functional and not too painful. However, the

years on walking on it all wrong probably contributed to my hip wear on that

side.

How old are you and do you have ankle pain now after walking? If your

ankles are stable enough to wear regular shoes you are very luck indeed. I'm

48, currently the ankle is OK to walk upon, but the knee/hip are non-weight

bearing until they replace the hip. Just one style of the SAS sandals are all I

wear, as they have a slight lift to the back and adjustable straps over the

toes and across the ankle. I have a couple " dressy " pairs of low heels with

ankle straps also, but if we're at an event where I have to wear them, I do a

lot of sitting .

Liza

Bernie>>>>

[Guest guest]

In a message dated 8/27/2004 4:01:29 PM Pacific Standard Time,

bfhalkett@... writes:

Liza: I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones!>>>

Yep, I agree....but that was their " explanation " for my strange posture back

in the 1960s! There was no question of xrays or MRIs then either....they just

poked at me and decided I was put together wrong!

Liza

[Guest guest]

In a message dated 8/27/2004 4:01:29 PM Pacific Standard Time,

bfhalkett@... writes:

Liza: I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones!>>>

Yep, I agree....but that was their " explanation " for my strange posture back

in the 1960s! There was no question of xrays or MRIs then either....they just

poked at me and decided I was put together wrong!

Liza

[Guest guest]

Hi Liza:

Interesting, someone else who walked on their toes. Her heal never

flattened out as would normally occur and it was immensely difficult to

find shoes that would stay on other than high top Rebok type sports

shoes that we literally were tying on to her ankle to keep them on. Her

foot particularly was very narrow...and the ankle quite lax.

She has a bunion and one foot that is almost a full size larger than the

other. As a result one shoe is always very loose fitting and she still

has to wear lace ups....size 11 no less.

Purchasing shoes upsets her totally as she can never wear slip on shoes,

one is always way too loose and won't stay on. It is the bane of her

life that she can never get any dressy type shoes even for a special

events. Sandals are next to impossible to buy. Large sizes always seem

so wide. We tried everything, orthotics for a time even.

The toe walking made life very difficult at school as she was teased and

always stood with one leg and knee tightly pressed up against the other,

as though she needed to go to the bathroom, but I realise this was to

tense the muscles and keep herself upright. She did not have a stable

base so others could push her out of lines and such very easily. There

were an immense number of falls in childhood. Really tough. Do you

remember any of this?

She still walks on her toes some, and one foot points outward to the

side a fair bit. When she is toe walking I know that her blood pressure

will be lower even than usual so it also had to do with keeping the

muscles tight to prevent pooling in the lower limbs. She prefers to keep

shoes on at all times in the house as they help to compress the blood

vessels in her feet and reduce pooling in the vessels. Also give

stability as ankles are NOT stable to this day.

High heals are an impossibility as ankle is too unstable. Had better

ankle stability before surgery when she toe walked. So if you are still

toe walking and have reasonable ankle stability don't fret about it.

The most painful aspect was that when we identified all the difficulties

created doctors would never clarify the lax ligaments as the problem and

with her muscles so tight it was not obvious that lax ligaments were the

problem. Doctors were deaf to the problems and would not help re

solutions.

It would have saved me so much anxiety and help me problem solve if they

had just been honest and clarified the too elastic ligaments. Basic

elastic ankle supports could have helped or ankle bracing. Amazingly,

she had no ankle or bone pain with walking, though there was lots of

burning pain in her toes first thing in the morning when she had her

feet over the side of the bed. Too painful to tolerate the touch of

socks and by times she would go without them. There were some very,

very difficult times during which we were given no understanding as to

the cause so of course I was not able to advocate adequately for her at

school. Do you recall any of this or did your mother identify these

difficulties?

How old are you and do you have ankle pain now after walking? If your

ankles are stable enough to wear regular shoes you are very luck indeed.

Bernie

Re: Periods of looser joints

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted I learned to walk on

my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles

attached

in the wrong spots in our legs! I did years of exercise to try to

strecth

those out, but still am not comfortable wearing any flat shoes nor

walking

flatfooted when barefoot!

Liza

[Guest guest]

Hi Liza:

Interesting, someone else who walked on their toes. Her heal never

flattened out as would normally occur and it was immensely difficult to

find shoes that would stay on other than high top Rebok type sports

shoes that we literally were tying on to her ankle to keep them on. Her

foot particularly was very narrow...and the ankle quite lax.

She has a bunion and one foot that is almost a full size larger than the

other. As a result one shoe is always very loose fitting and she still

has to wear lace ups....size 11 no less.

Purchasing shoes upsets her totally as she can never wear slip on shoes,

one is always way too loose and won't stay on. It is the bane of her

life that she can never get any dressy type shoes even for a special

events. Sandals are next to impossible to buy. Large sizes always seem

so wide. We tried everything, orthotics for a time even.

The toe walking made life very difficult at school as she was teased and

always stood with one leg and knee tightly pressed up against the other,

as though she needed to go to the bathroom, but I realise this was to

tense the muscles and keep herself upright. She did not have a stable

base so others could push her out of lines and such very easily. There

were an immense number of falls in childhood. Really tough. Do you

remember any of this?

She still walks on her toes some, and one foot points outward to the

side a fair bit. When she is toe walking I know that her blood pressure

will be lower even than usual so it also had to do with keeping the

muscles tight to prevent pooling in the lower limbs. She prefers to keep

shoes on at all times in the house as they help to compress the blood

vessels in her feet and reduce pooling in the vessels. Also give

stability as ankles are NOT stable to this day.

High heals are an impossibility as ankle is too unstable. Had better

ankle stability before surgery when she toe walked. So if you are still

toe walking and have reasonable ankle stability don't fret about it.

The most painful aspect was that when we identified all the difficulties

created doctors would never clarify the lax ligaments as the problem and

with her muscles so tight it was not obvious that lax ligaments were the

problem. Doctors were deaf to the problems and would not help re

solutions.

It would have saved me so much anxiety and help me problem solve if they

had just been honest and clarified the too elastic ligaments. Basic

elastic ankle supports could have helped or ankle bracing. Amazingly,

she had no ankle or bone pain with walking, though there was lots of

burning pain in her toes first thing in the morning when she had her

feet over the side of the bed. Too painful to tolerate the touch of

socks and by times she would go without them. There were some very,

very difficult times during which we were given no understanding as to

the cause so of course I was not able to advocate adequately for her at

school. Do you recall any of this or did your mother identify these

difficulties?

How old are you and do you have ankle pain now after walking? If your

ankles are stable enough to wear regular shoes you are very luck indeed.

Bernie

Re: Periods of looser joints

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted I learned to walk on

my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles

attached

in the wrong spots in our legs! I did years of exercise to try to

strecth

those out, but still am not comfortable wearing any flat shoes nor

walking

flatfooted when barefoot!

Liza

[Guest guest]

Liza: I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones! I know the burning

pain Meaghan had when she tried to do those stretches. The pain is

particularly severe if you do the stretching first thing in a.m. Been

there, done that!

Regards, Bernie

Re: Periods of looser joints

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted I learned to walk on

my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles

attached

in the wrong spots in our legs! I did years of exercise to try to

strecth

those out, but still am not comfortable wearing any flat shoes nor

walking

flatfooted when barefoot!

Liza

[Guest guest]

Liza: I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones! I know the burning

pain Meaghan had when she tried to do those stretches. The pain is

particularly severe if you do the stretching first thing in a.m. Been

there, done that!

Regards, Bernie

Re: Periods of looser joints

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted I learned to walk on

my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles

attached

in the wrong spots in our legs! I did years of exercise to try to

strecth

those out, but still am not comfortable wearing any flat shoes nor

walking

flatfooted when barefoot!

Liza

[Guest guest]

Liza: I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones! I know the burning

pain Meaghan had when she tried to do those stretches. The pain is

particularly severe if you do the stretching first thing in a.m. Been

there, done that!

Regards, Bernie

Re: Periods of looser joints

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted I learned to walk on

my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles

attached

in the wrong spots in our legs! I did years of exercise to try to

strecth

those out, but still am not comfortable wearing any flat shoes nor

walking

flatfooted when barefoot!

Liza

[Guest guest]

>>>I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones!<<<<

I would tend to agree but, I do!

My first orthopedic surgeon (when I was 11) told my parents that my ankle

reconstruction was more difficult because the tendon that was intended to be

harvested to replace the ligament that was torn and now atrophied was " not

attached in the correct spot " .

So, although possible that was me and I have a tendency to push the limits

of " normal " when it comes to ligament and tendon structure.

Debbi

AKA: jetskideb

SoCal EDS'er

Re: Periods of looser joints

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted I learned to walk on

my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles

attached

in the wrong spots in our legs! I did years of exercise to try to

strecth

those out, but still am not comfortable wearing any flat shoes nor

walking

flatfooted when barefoot!

Liza

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

>>>I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones!<<<<

I would tend to agree but, I do!

My first orthopedic surgeon (when I was 11) told my parents that my ankle

reconstruction was more difficult because the tendon that was intended to be

harvested to replace the ligament that was torn and now atrophied was " not

attached in the correct spot " .

So, although possible that was me and I have a tendency to push the limits

of " normal " when it comes to ligament and tendon structure.

Debbi

AKA: jetskideb

SoCal EDS'er

Re: Periods of looser joints

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted I learned to walk on

my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles

attached

in the wrong spots in our legs! I did years of exercise to try to

strecth

those out, but still am not comfortable wearing any flat shoes nor

walking

flatfooted when barefoot!

Liza

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

>>>I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones!<<<<

I would tend to agree but, I do!

My first orthopedic surgeon (when I was 11) told my parents that my ankle

reconstruction was more difficult because the tendon that was intended to be

harvested to replace the ligament that was torn and now atrophied was " not

attached in the correct spot " .

So, although possible that was me and I have a tendency to push the limits

of " normal " when it comes to ligament and tendon structure.

Debbi

AKA: jetskideb

SoCal EDS'er

Re: Periods of looser joints

In a message dated 8/27/2004 12:13:47 PM Pacific Standard Time,

bfhalkett@... writes:

She could not be nearly as active as previously since she

had to learn to walk all over again.....had walked high up on her toes

since 2, and calf and leg muscles were contracted I learned to walk on

my toes as a kid. Doctors back then spotted the same

thing with my father & said he and I actually had the tendons & muscles

attached

in the wrong spots in our legs! I did years of exercise to try to

strecth

those out, but still am not comfortable wearing any flat shoes nor

walking

flatfooted when barefoot!

Liza

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Debbie:

That is just amazing. Had the surgeon seen this often previously and

did he think it occurs a lot with EDS or other connective tissue

disorders. Have you ever mentioned this to the geneticists and had

comments back from them. Has anyone ever read of this in the medical

research. Incidences must be written up somewhere. Is it possible this

is part of EDS also. We have EDS with marfanoid features i.e. the long

bones, so why might this not also be a possibility. You would think

that if surgeons found this even at higher rate with HEDS that the

geneticists would be checking out that possibility. There's a question

for Dr. McDonell The reason I am saying this is that my dtr and

husband have identical feet and if there ever was a bad design as far as

bone structure to not provide stability that is it...and yet my husband

has not had any real foot problems, like frequent sprains or requiring

orthotics etc. He has problems in the knee. Mike always says when you

have soft tissue injury always look elsewhere for the cause of the

problem. With his success who am I to question. Would this show up on

ultrasound?

Debbie. We have to ask about this!

Regards, Bernie

RE: Periods of looser joints

>>>I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones!<<<<

I would tend to agree but, I do!

My first orthopedic surgeon (when I was 11) told my parents that my

ankle

reconstruction was more difficult because the tendon that was intended

to be

harvested to replace the ligament that was torn and now atrophied was

" not

attached in the correct spot " .

So, although possible that was me and I have a tendency to push the

limits

of " normal " when it comes to ligament and tendon structure.

Debbi

AKA: jetskideb

SoCal EDS'er

[Guest guest]

Liza:

Yes, we love SAS shoes too. Do you know SAS stands for San

Shoes. Quite by accident years ago I got a pair at an SAS Outlet in San

....even tho I live in Canada. I love their loafers for myself,

sooo soft and my Xmas money is requested for their after Xmas sale.

Meaghan has a pair of their sandals but the ones we purchased have too

narrow ankle straps and not supportive enough now. We'll have to go

again. She also prefers to walk on her toes when barefoot and even when

just wearing socks. The small similarities are amazing

She had her feet x-rayed standing by a podiatrist years ago, but that is

a great tip and I will follow-up on it as she is having subluxing of her

one hip. Thanks for that info. Will keep your email to show the doc.

Re: Periods of looser joints

In a message dated 8/27/2004 3:31:53 PM Pacific Standard Time,

bfhalkett@... writes:

>>>>>Hi Liza:

Interesting, someone else who walked on their toes. Her heal never

flattened out as would normally occur and it was immensely difficult to

find shoes that would stay on other than high top Rebok type sports

shoes that we literally were tying on to her ankle to keep them on. Her

foot particularly was very narrow...and the ankle quite lax.>>>>

My feet are AAA at the heels, but flatten out at the front, so shoes are

a

nightmare too! Currently the only ones I can wear is one sandal style

from SAS

that adjusts both front and at the ankle, plus a special custom pair of

Z-Coils in a 5 narrow. I remember wearing multiple pairs of socks to be

able to fit

the regulation KEDS tennis shoes back in school gym.

She has a bunion and one foot that is almost a full size larger than the

other. As a result one shoe is always very loose fitting and she still

has to wear lace ups....size 11 no less. My left foot is also 1/2 size

larger than the right. Problem with lace-up shoes for me tho is my feet

are

sensitive to heat/sweat and break out if they don't have constant air

circulation.

So even in the rain, I'm usually wearing my sandals.

Purchasing shoes upsets her totally as she can never wear slip on shoes,

one is always way too loose and won't stay on. It is the bane of her

life that she can never get any dressy type shoes even for a special

events. Sandals are next to impossible to buy. Large sizes always seem

so wide. We tried everything, orthotics for a time even.

The toe walking made life very difficult at school as she was teased and

always stood with one leg and knee tightly pressed up against the other,

as though she needed to go to the bathroom, but I realise this was to

tense the muscles and keep herself upright. She did not have a stable

base so others could push her out of lines and such very easily. There

were an immense number of falls in childhood. Really tough. Do you

remember any of this? Mirrors my childhood, posture etc exactly!

Nowdays I

walk with both thighs even pressed together so my knees support each

other & my

loose hip doesn't turn to the inside. Try doing that with crutches,

LOL. I

think I had a new sprained ankle twice a month all the way thru my

school

years. My daughter also falls all the time...off the stage in the

auditorium once

even! She hates the stairs at school, especially when people bump into

her.

She still walks on her toes some, and one foot points outward to the

side a fair bit. When she is toe walking I know that her blood pressure

will be lower even than usual so it also had to do with keeping the

muscles tight to prevent pooling in the lower limbs. She prefers to keep

shoes on at all times in the house as they help to compress the blood

vessels in her feet and reduce pooling in the vessels. Also give

stability as ankles are NOT stable to this day. I used to like to walk

barefoot, but now my heel needs the support of a short hell, so I have

to put on my

shoes to go to the bathroom at night even. While working and reaching

for

stuff in my kitchen (I'm short anyways), I find myself on my toes every

minute

and have to force myself to walk with my heel hitting the floor first.

High heals are an impossibility as ankle is too unstable. Had better

ankle stability before surgery when she toe walked. So if you are still

toe walking and have reasonable ankle stability don't fret about it.

The most painful aspect was that when we identified all the difficulties

created doctors would never clarify the lax ligaments as the problem and

with her muscles so tight it was not obvious that lax ligaments were the

problem. Doctors were deaf to the problems and would not help re

solutions. Actually I did wear heels as a teen and they were much like

walking barefoot on my toes. But when I had my son, I couldn't tolerate

the

pressure on my toes after that when in heels. Yet I can still walk

barefoot on

toes??? Doctors never spotted my real issues either, tho I remember

them advising

my mother to make me wear " sensible shoes " as a child. So I had those

awful

clunky black & white oxfords while other girls got the cuter Janes.

It would have saved me so much anxiety and help me problem solve if they

had just been honest and clarified the too elastic ligaments. Basic

elastic ankle supports could have helped or ankle bracing. Amazingly,

she had no ankle or bone pain with walking, though there was lots of

burning pain in her toes first thing in the morning when she had her

feet over the side of the bed. Too painful to tolerate the touch of

socks and by times she would go without them. There were some very,

very difficult times during which we were given no understanding as to

the cause so of course I was not able to advocate adequately for her at

school. Do you recall any of this or did your mother identify these

difficulties? I mainly had the constant ankle sprains...even once broke

a

bone in the side of my right foot & they assumed it was a usual sprain

for a

couple weeks before bothering to xray it. Later after my son was born

and the

feet swelled and hurt more, a smart doctor took a set of standing xrays.

My

right ankle was completely dislocated, the leg bone resting on a bone

spur on the

outside right of the ankle joint. The joint has worn so much it is

triangular instead of round. The docs wanted to fuse both ankles, but I

tried

chiropractic instead. She got the bones realigned & I've done as much

exercise as

possible to keep the muscles supporting that joint. It doesn't bend as

well as

the left, but it is still very functional and not too painful. However,

the

years on walking on it all wrong probably contributed to my hip wear on

that

side.

How old are you and do you have ankle pain now after walking? If your

ankles are stable enough to wear regular shoes you are very luck indeed.

I'm

48, currently the ankle is OK to walk upon, but the knee/hip are

non-weight

bearing until they replace the hip. Just one style of the SAS sandals

are all I

wear, as they have a slight lift to the back and adjustable straps over

the

toes and across the ankle. I have a couple " dressy " pairs of low heels

with

ankle straps also, but if we're at an event where I have to wear them, I

do a

lot of sitting .

Liza

[Guest guest]

Liza:

Yes, we love SAS shoes too. Do you know SAS stands for San

Shoes. Quite by accident years ago I got a pair at an SAS Outlet in San

....even tho I live in Canada. I love their loafers for myself,

sooo soft and my Xmas money is requested for their after Xmas sale.

Meaghan has a pair of their sandals but the ones we purchased have too

narrow ankle straps and not supportive enough now. We'll have to go

again. She also prefers to walk on her toes when barefoot and even when

just wearing socks. The small similarities are amazing

She had her feet x-rayed standing by a podiatrist years ago, but that is

a great tip and I will follow-up on it as she is having subluxing of her

one hip. Thanks for that info. Will keep your email to show the doc.

Re: Periods of looser joints

In a message dated 8/27/2004 3:31:53 PM Pacific Standard Time,

bfhalkett@... writes:

>>>>>Hi Liza:

Interesting, someone else who walked on their toes. Her heal never

flattened out as would normally occur and it was immensely difficult to

find shoes that would stay on other than high top Rebok type sports

shoes that we literally were tying on to her ankle to keep them on. Her

foot particularly was very narrow...and the ankle quite lax.>>>>

My feet are AAA at the heels, but flatten out at the front, so shoes are

a

nightmare too! Currently the only ones I can wear is one sandal style

from SAS

that adjusts both front and at the ankle, plus a special custom pair of

Z-Coils in a 5 narrow. I remember wearing multiple pairs of socks to be

able to fit

the regulation KEDS tennis shoes back in school gym.

She has a bunion and one foot that is almost a full size larger than the

other. As a result one shoe is always very loose fitting and she still

has to wear lace ups....size 11 no less. My left foot is also 1/2 size

larger than the right. Problem with lace-up shoes for me tho is my feet

are

sensitive to heat/sweat and break out if they don't have constant air

circulation.

So even in the rain, I'm usually wearing my sandals.

Purchasing shoes upsets her totally as she can never wear slip on shoes,

one is always way too loose and won't stay on. It is the bane of her

life that she can never get any dressy type shoes even for a special

events. Sandals are next to impossible to buy. Large sizes always seem

so wide. We tried everything, orthotics for a time even.

The toe walking made life very difficult at school as she was teased and

always stood with one leg and knee tightly pressed up against the other,

as though she needed to go to the bathroom, but I realise this was to

tense the muscles and keep herself upright. She did not have a stable

base so others could push her out of lines and such very easily. There

were an immense number of falls in childhood. Really tough. Do you

remember any of this? Mirrors my childhood, posture etc exactly!

Nowdays I

walk with both thighs even pressed together so my knees support each

other & my

loose hip doesn't turn to the inside. Try doing that with crutches,

LOL. I

think I had a new sprained ankle twice a month all the way thru my

school

years. My daughter also falls all the time...off the stage in the

auditorium once

even! She hates the stairs at school, especially when people bump into

her.

She still walks on her toes some, and one foot points outward to the

side a fair bit. When she is toe walking I know that her blood pressure

will be lower even than usual so it also had to do with keeping the

muscles tight to prevent pooling in the lower limbs. She prefers to keep

shoes on at all times in the house as they help to compress the blood

vessels in her feet and reduce pooling in the vessels. Also give

stability as ankles are NOT stable to this day. I used to like to walk

barefoot, but now my heel needs the support of a short hell, so I have

to put on my

shoes to go to the bathroom at night even. While working and reaching

for

stuff in my kitchen (I'm short anyways), I find myself on my toes every

minute

and have to force myself to walk with my heel hitting the floor first.

High heals are an impossibility as ankle is too unstable. Had better

ankle stability before surgery when she toe walked. So if you are still

toe walking and have reasonable ankle stability don't fret about it.

The most painful aspect was that when we identified all the difficulties

created doctors would never clarify the lax ligaments as the problem and

with her muscles so tight it was not obvious that lax ligaments were the

problem. Doctors were deaf to the problems and would not help re

solutions. Actually I did wear heels as a teen and they were much like

walking barefoot on my toes. But when I had my son, I couldn't tolerate

the

pressure on my toes after that when in heels. Yet I can still walk

barefoot on

toes??? Doctors never spotted my real issues either, tho I remember

them advising

my mother to make me wear " sensible shoes " as a child. So I had those

awful

clunky black & white oxfords while other girls got the cuter Janes.

It would have saved me so much anxiety and help me problem solve if they

had just been honest and clarified the too elastic ligaments. Basic

elastic ankle supports could have helped or ankle bracing. Amazingly,

she had no ankle or bone pain with walking, though there was lots of

burning pain in her toes first thing in the morning when she had her

feet over the side of the bed. Too painful to tolerate the touch of

socks and by times she would go without them. There were some very,

very difficult times during which we were given no understanding as to

the cause so of course I was not able to advocate adequately for her at

school. Do you recall any of this or did your mother identify these

difficulties? I mainly had the constant ankle sprains...even once broke

a

bone in the side of my right foot & they assumed it was a usual sprain

for a

couple weeks before bothering to xray it. Later after my son was born

and the

feet swelled and hurt more, a smart doctor took a set of standing xrays.

My

right ankle was completely dislocated, the leg bone resting on a bone

spur on the

outside right of the ankle joint. The joint has worn so much it is

triangular instead of round. The docs wanted to fuse both ankles, but I

tried

chiropractic instead. She got the bones realigned & I've done as much

exercise as

possible to keep the muscles supporting that joint. It doesn't bend as

well as

the left, but it is still very functional and not too painful. However,

the

years on walking on it all wrong probably contributed to my hip wear on

that

side.

How old are you and do you have ankle pain now after walking? If your

ankles are stable enough to wear regular shoes you are very luck indeed.

I'm

48, currently the ankle is OK to walk upon, but the knee/hip are

non-weight

bearing until they replace the hip. Just one style of the SAS sandals

are all I

wear, as they have a slight lift to the back and adjustable straps over

the

toes and across the ankle. I have a couple " dressy " pairs of low heels

with

ankle straps also, but if we're at an event where I have to wear them, I

do a

lot of sitting .

Liza

[Guest guest]

ME, MY SON AND A GREAT AUNT ALL ARE/WERE TOE WALKERS. Lodin can walk but is

very unsteady.

AUTUMN

_____

From: Thing1973@...

Sent: Friday, August 27, 2004 9:22 PM

To: ceda

Subject: Re: Periods of looser joints

In a message dated 8/27/2004 3:31:53 PM Pacific Standard Time,

bfhalkett@... writes:

>>>>>Hi Liza:

Interesting, someone else who walked on their toes. Her heal never

flattened out as would normally occur and it was immensely difficult to

find shoes that would stay on other than high top Rebok type sports

shoes that we literally were tying on to her ankle to keep them on. Her

foot particularly was very narrow...and the ankle quite lax.>>>>

My feet are AAA at the heels, but flatten out at the front, so shoes are a

nightmare too! Currently the only ones I can wear is one sandal style from

SAS

that adjusts both front and at the ankle, plus a special custom pair of

Z-Coils in a 5 narrow. I remember wearing multiple pairs of socks to be

able to fit

the regulation KEDS tennis shoes back in school gym.

She has a bunion and one foot that is almost a full size larger than the

other. As a result one shoe is always very loose fitting and she still

has to wear lace ups....size 11 no less. My left foot is also 1/2 size

larger than the right. Problem with lace-up shoes for me tho is my feet are

sensitive to heat/sweat and break out if they don't have constant air

circulation.

So even in the rain, I'm usually wearing my sandals.

Purchasing shoes upsets her totally as she can never wear slip on shoes,

one is always way too loose and won't stay on. It is the bane of her

life that she can never get any dressy type shoes even for a special

events. Sandals are next to impossible to buy. Large sizes always seem

so wide. We tried everything, orthotics for a time even.

The toe walking made life very difficult at school as she was teased and

always stood with one leg and knee tightly pressed up against the other,

as though she needed to go to the bathroom, but I realise this was to

tense the muscles and keep herself upright. She did not have a stable

base so others could push her out of lines and such very easily. There

were an immense number of falls in childhood. Really tough. Do you

remember any of this? Mirrors my childhood, posture etc exactly! Nowdays I

walk with both thighs even pressed together so my knees support each other &

my

loose hip doesn't turn to the inside. Try doing that with crutches, LOL. I

think I had a new sprained ankle twice a month all the way thru my school

years. My daughter also falls all the time...off the stage in the

auditorium once

even! She hates the stairs at school, especially when people bump into her.

She still walks on her toes some, and one foot points outward to the

side a fair bit. When she is toe walking I know that her blood pressure

will be lower even than usual so it also had to do with keeping the

muscles tight to prevent pooling in the lower limbs. She prefers to keep

shoes on at all times in the house as they help to compress the blood

vessels in her feet and reduce pooling in the vessels. Also give

stability as ankles are NOT stable to this day. I used to like to walk

barefoot, but now my heel needs the support of a short hell, so I have to

put on my

shoes to go to the bathroom at night even. While working and reaching for

stuff in my kitchen (I'm short anyways), I find myself on my toes every

minute

and have to force myself to walk with my heel hitting the floor first.

High heals are an impossibility as ankle is too unstable. Had better

ankle stability before surgery when she toe walked. So if you are still

toe walking and have reasonable ankle stability don't fret about it.

The most painful aspect was that when we identified all the difficulties

created doctors would never clarify the lax ligaments as the problem and

with her muscles so tight it was not obvious that lax ligaments were the

problem. Doctors were deaf to the problems and would not help re

solutions. Actually I did wear heels as a teen and they were much like

walking barefoot on my toes. But when I had my son, I couldn't tolerate the

pressure on my toes after that when in heels. Yet I can still walk barefoot

on

toes??? Doctors never spotted my real issues either, tho I remember them

advising

my mother to make me wear " sensible shoes " as a child. So I had those awful

clunky black & white oxfords while other girls got the cuter Janes.

It would have saved me so much anxiety and help me problem solve if they

had just been honest and clarified the too elastic ligaments. Basic

elastic ankle supports could have helped or ankle bracing. Amazingly,

she had no ankle or bone pain with walking, though there was lots of

burning pain in her toes first thing in the morning when she had her

feet over the side of the bed. Too painful to tolerate the touch of

socks and by times she would go without them. There were some very,

very difficult times during which we were given no understanding as to

the cause so of course I was not able to advocate adequately for her at

school. Do you recall any of this or did your mother identify these

difficulties? I mainly had the constant ankle sprains...even once broke a

bone in the side of my right foot & they assumed it was a usual sprain for a

couple weeks before bothering to xray it. Later after my son was born and

the

feet swelled and hurt more, a smart doctor took a set of standing xrays. My

right ankle was completely dislocated, the leg bone resting on a bone spur

on the

outside right of the ankle joint. The joint has worn so much it is

triangular instead of round. The docs wanted to fuse both ankles, but I

tried

chiropractic instead. She got the bones realigned & I've done as much

exercise as

possible to keep the muscles supporting that joint. It doesn't bend as well

as

the left, but it is still very functional and not too painful. However, the

years on walking on it all wrong probably contributed to my hip wear on that

side.

How old are you and do you have ankle pain now after walking? If your

ankles are stable enough to wear regular shoes you are very luck indeed. I'm

48, currently the ankle is OK to walk upon, but the knee/hip are non-weight

bearing until they replace the hip. Just one style of the SAS sandals are

all I

wear, as they have a slight lift to the back and adjustable straps over the

toes and across the ankle. I have a couple " dressy " pairs of low heels with

ankle straps also, but if we're at an event where I have to wear them, I do

a

lot of sitting .

Liza

Bernie>>>>