Re: Uhhh, EDS Type 3??? Hypermobility

[Guest guest]

Hi Robin,

I don't think it is as uncommon as people think. We seem to have two

different types in my family. I think the old saying, " Birds of feather flock

together " really applies and the one where they say you marry someone like your

MOther/father. My husband does not have EDS but his mother does. She was a

professional contortionist back in her day. She could always spontaneously

dislocate her joints.....she now has severe arthritis. I think when you have

EDS/hypermobility you are used to seeing your own family that way....you may

unknowingly be attracted to someone with the same mannerisms, gestures, stances,

etc.

You get my drift. Hope this helps you to think about it and look at it in

another light. There are more than just one or two couples in the group where

both parents have been diagnosed.

Hugs,

Sue

[Guest guest]

Hi Robin,

I don't think it is as uncommon as people think. We seem to have two

different types in my family. I think the old saying, " Birds of feather flock

together " really applies and the one where they say you marry someone like your

MOther/father. My husband does not have EDS but his mother does. She was a

professional contortionist back in her day. She could always spontaneously

dislocate her joints.....she now has severe arthritis. I think when you have

EDS/hypermobility you are used to seeing your own family that way....you may

unknowingly be attracted to someone with the same mannerisms, gestures, stances,

etc.

You get my drift. Hope this helps you to think about it and look at it in

another light. There are more than just one or two couples in the group where

both parents have been diagnosed.

Hugs,

Sue

[Guest guest]

Hi Robin,

I'm Aase Marit from Norway. I have the hypermobility type EDS

(formerly called type III, HEDS for short).

Quite a few people have posted on here about having Arnold Chiari

Malformation before, and I think they had HEDS, but I can't be sure.

I don't know if this is a common thing in EDS, but it makes you

wonder when several post about it. It is not as if it is a very

common thing, right? I know a woman who has had a lot of problems

with that herself, she has a shunt and has had several surgeries. She

also has several signs of EDS, but isn't diagnosed. I have given her

some info and told her about EDS, so the rest is up to her.

EDS is considered a rare disorder, but how rare it really is, we

really don't know. But we do know that it is really underdiagnosed. I

really don't think that it is rare at all, to be honest, at least not

HEDS. The first numbers I read were 1/150.000, now I read 1/5000, so

who knows what is really correct. But if it is really not that rare,

chances are that things like that might happen, that two EDSers find

eachother. I am the only one in my family who is diagnosed, but my

dad has signs and my mom also had signs of EDS. I am sure that one of

my sisters has it, but she does not want to pursue getting a

diagnosis. She could get checked, her daughter was checked and the

genetecist offered to check her too, but she said no thanks...

You may have thought of yourself as stiff because you, without

thinking about it, brace yourself and do movements carefully to avoid

pain etc. And we can also feel stiff, without really being stiff if

you compare to " normal " people...

If you have HEDS, it is really a good idea to get a diagnosis. It is

so much easier to relate to things in a constructive way when you

know what you are dealing with... No doubt about that... If you want

to find out for sure, I think your best bet would be a genetecist at

a teaching hospital... I am sure that somebody here knows about

someone in your area...

Aase Marit

>Hi! I posted a couple of weeks ago as an introduction because my

>daughter and husband have the Classical form of EDS. At any rate I

>have Chiari and was just seen in NY at the Chiari Institute. Get

>this...they think that I have EDS 3! I did the tests mentioned on the

>eds foundation website and could do all of the stuff but I've always

>thought of myself as rather stiff not loose...esp in comparison to my

>husband and daugther. My oldest child, (not Hannah who has EDS)

>however, (who is from a previous relationship and not my husband) is

>quite flexible, more than me in some ways, less in others. Is there

>anyone out there that could shed some light on this for me. I cannot

>even imagine that I have this, that my husband has this, that we have

>2 different types and married without ever knowing of me having it.

>How weird is that?? How can I know if I really do have it? Ideas?

[Guest guest]

Hi Robin,

I'm Aase Marit from Norway. I have the hypermobility type EDS

(formerly called type III, HEDS for short).

Quite a few people have posted on here about having Arnold Chiari

Malformation before, and I think they had HEDS, but I can't be sure.

I don't know if this is a common thing in EDS, but it makes you

wonder when several post about it. It is not as if it is a very

common thing, right? I know a woman who has had a lot of problems

with that herself, she has a shunt and has had several surgeries. She

also has several signs of EDS, but isn't diagnosed. I have given her

some info and told her about EDS, so the rest is up to her.

EDS is considered a rare disorder, but how rare it really is, we

really don't know. But we do know that it is really underdiagnosed. I

really don't think that it is rare at all, to be honest, at least not

HEDS. The first numbers I read were 1/150.000, now I read 1/5000, so

who knows what is really correct. But if it is really not that rare,

chances are that things like that might happen, that two EDSers find

eachother. I am the only one in my family who is diagnosed, but my

dad has signs and my mom also had signs of EDS. I am sure that one of

my sisters has it, but she does not want to pursue getting a

diagnosis. She could get checked, her daughter was checked and the

genetecist offered to check her too, but she said no thanks...

You may have thought of yourself as stiff because you, without

thinking about it, brace yourself and do movements carefully to avoid

pain etc. And we can also feel stiff, without really being stiff if

you compare to " normal " people...

If you have HEDS, it is really a good idea to get a diagnosis. It is

so much easier to relate to things in a constructive way when you

know what you are dealing with... No doubt about that... If you want

to find out for sure, I think your best bet would be a genetecist at

a teaching hospital... I am sure that somebody here knows about

someone in your area...

Aase Marit

>Hi! I posted a couple of weeks ago as an introduction because my

>daughter and husband have the Classical form of EDS. At any rate I

>have Chiari and was just seen in NY at the Chiari Institute. Get

>this...they think that I have EDS 3! I did the tests mentioned on the

>eds foundation website and could do all of the stuff but I've always

>thought of myself as rather stiff not loose...esp in comparison to my

>husband and daugther. My oldest child, (not Hannah who has EDS)

>however, (who is from a previous relationship and not my husband) is

>quite flexible, more than me in some ways, less in others. Is there

>anyone out there that could shed some light on this for me. I cannot

>even imagine that I have this, that my husband has this, that we have

>2 different types and married without ever knowing of me having it.

>How weird is that?? How can I know if I really do have it? Ideas?

[Guest guest]

Hi Robin,

I'm Aase Marit from Norway. I have the hypermobility type EDS

(formerly called type III, HEDS for short).

Quite a few people have posted on here about having Arnold Chiari

Malformation before, and I think they had HEDS, but I can't be sure.

I don't know if this is a common thing in EDS, but it makes you

wonder when several post about it. It is not as if it is a very

common thing, right? I know a woman who has had a lot of problems

with that herself, she has a shunt and has had several surgeries. She

also has several signs of EDS, but isn't diagnosed. I have given her

some info and told her about EDS, so the rest is up to her.

EDS is considered a rare disorder, but how rare it really is, we

really don't know. But we do know that it is really underdiagnosed. I

really don't think that it is rare at all, to be honest, at least not

HEDS. The first numbers I read were 1/150.000, now I read 1/5000, so

who knows what is really correct. But if it is really not that rare,

chances are that things like that might happen, that two EDSers find

eachother. I am the only one in my family who is diagnosed, but my

dad has signs and my mom also had signs of EDS. I am sure that one of

my sisters has it, but she does not want to pursue getting a

diagnosis. She could get checked, her daughter was checked and the

genetecist offered to check her too, but she said no thanks...

You may have thought of yourself as stiff because you, without

thinking about it, brace yourself and do movements carefully to avoid

pain etc. And we can also feel stiff, without really being stiff if

you compare to " normal " people...

If you have HEDS, it is really a good idea to get a diagnosis. It is

so much easier to relate to things in a constructive way when you

know what you are dealing with... No doubt about that... If you want

to find out for sure, I think your best bet would be a genetecist at

a teaching hospital... I am sure that somebody here knows about

someone in your area...

Aase Marit

>Hi! I posted a couple of weeks ago as an introduction because my

>daughter and husband have the Classical form of EDS. At any rate I

>have Chiari and was just seen in NY at the Chiari Institute. Get

>this...they think that I have EDS 3! I did the tests mentioned on the

>eds foundation website and could do all of the stuff but I've always

>thought of myself as rather stiff not loose...esp in comparison to my

>husband and daugther. My oldest child, (not Hannah who has EDS)

>however, (who is from a previous relationship and not my husband) is

>quite flexible, more than me in some ways, less in others. Is there

>anyone out there that could shed some light on this for me. I cannot

>even imagine that I have this, that my husband has this, that we have

>2 different types and married without ever knowing of me having it.

>How weird is that?? How can I know if I really do have it? Ideas?

[Guest guest]

In my opinion, there are A LOT of people out there with type 3, who don't even

know it. I was talking with some people at my son's karate school. One family

there, has so many of the symptoms - lots of injuries, spontaneous pneumothorax,

lots of " little " things, and I watched the dad and one daughter during class,

and they are definetly hypermobile. The mom told me she can't figure out why

they are always getting injured, getting weird health problems, and why her kids

are now complaining of joint pain. She told them it's growing pains. Well, I

told her to look up hypermobility and EDS ont he web.

I haven't talked to her again yet, as hasn't been to karate this week

(bronchitis).

I didn't know that everyone couldn't do the things I can do with my body until a

few years ago when a dr told me I am hypermobile.

I think part of the problem is is that not everyone who is hypermobile has pain,

so people don't go to the dr about it much.

I think there is another family on this board where both mom and dad are

affected.

And, if Barb and her husband (Kerry? I keep forgetting his name! ) had a kid,

then they would be another, cause they both have it.

So, in reality, there are probably thousands of families out there who have type

3, and don't even know it. I think it takes something drastic until people find

a dr who actually knows about it. I went to drs for 11 years, and none of them

could tell me anything other than I am hypermobile. I actually stumbled on EDS

through my physical therapist.

I was in chronic pain for 11 years, then my daughter popped a lung, and my other

daughter started having the same symptoms as me, and a lot of other little

stuff. It all fit - and then I made it to Dr Byers.

Honestly, I still don't know if my dx is a solid one or not.

But, Dr Byers said a lot of dr's think that begnin hypermobility syndrome and

Ehlers danlos syndrome type 3 are the same thing. At least he thinks so.

I've been dx with hypermobility syndrome by about 5 doctors, so Dr Byers says

it's all the same.

Hugs,

[Guest guest]

> In my opinion, there are A LOT of people out there with type 3, who

don't even know it. > I've been dx with hypermobility syndrome by

about 5 doctors, so Dr Byers says it's all the same.

> Hugs,

>

Hi ,

I believe Dr. Byers is right. I've heard others say that benign

hypermobility is EDS 3 without the skin issues. Either way, it

doesn't really matter - we all have about the same issues. I agree

also, that there are probably thousands who have it and just think

it's aches and pains or old age or whatever. I have tried to talk to

several people about it and just get a blank look, or they don't want

to hear it or something! I think it takes a pretty 'big' problem

that hurts a lot before they start investigating it. Unfortunately,

by then, more damage may have already been done!

Love Lana

[Guest guest]

Hi ,

Here in Norway you won't get an EDS diagnosis without having skin

issues. If you have the other things but no skin issues, you will get

a Hypermobility Syndrome diagnosis instead. I really think they are

the same, but that some have skin issues while others don't... We are

all variations over the same, we have a lot in common, but there's

also differences...

At a learning stay at a center for rare disorders at a rehab

hospital, we were 6 EDSers who went there for them to learn from us

when they included this diagnosis to the ones they already worked

with. Amongst us there were 1 with VEDS and 5 with HEDS/CEDS. I was

the only one of the 5 of us who got a written report from the doctor

concluding with HEDS, because he was all confused because of the lack

of skin symptoms in the others. He really made all of us scared,

because of his confusion, because he kept " thinking out loud " and

questioning people's diagnoses. And you surely don't do that with

EDSers who have gone such a long time with no diagnosis... He

concluded on EDS in me because I had real proof of slow healing, I

had a TB test in the beginning of February and this was August, and

the " cat scratches " had not healed yet. I also have a lot of striae,

some funny marks on my back skin, velvety skin. The genetecist who

diagnosed me, said that I probably had mildly stretchable skin, but

it is not that stretchy. Like so many of us, my hands look kind of

old though, I have too much skin there...

Aase Marit

>But, Dr Byers said a lot of dr's think that begnin hypermobility

>syndrome and Ehlers danlos syndrome type 3 are the same thing. At

>least he thinks so.

>

>I've been dx with hypermobility syndrome by about 5 doctors, so Dr

>Byers says it's all the same.

>

[Guest guest]

Hi again ,

Forgot this... Yes, but Barb and Kerry (yes, that is his name) met at

the EDNF conference... Not much of a coincidence there...

Aase Marit

>And, if Barb and her husband (Kerry? I keep forgetting his name! )

>had a kid, then they would be another, cause they both have it.

[Guest guest]

Antother reason you could be stiff is that your muscles are stiff

even if your ligaments are loose. Then of course there are degrees

of ligament laxity - we have several degrees of laxity and pain in

our family.

Or you could be like us - all we knew was each other so we didn't

realize we were 'weird' - we always thought it was my husband that

was 'weird'.

And then there is the always possible senario that the doctor gave a

wrong diagnosis - you know, they want so much to label stuff right

away, rather than have patience and figure it out correctly. Many

doctors have a hard time not knowing everything.

Either way - when you figure it out - keep us posted :-)

[Guest guest]

>Hi Lana,

I could not agree more... It is the same with my sister. She even

doesn't have any effects of local anaesthetics. She has had a lot of

EDS typical things going on. But she does not want to get checked to

see if she really has it. It is as if things will get worse if she

gets a name for it. And then she says " But I am nothing like you " .

But of course there is different degrees and different manifestations

of things. And she won't suddenly become the way I am if she gets a

diagnosis. But it sure is a good help to get a name for what you are

dealing with, you can approach it in a better way and you know which

things you need to be careful with. She is also getting more problems

as years are passing, I think. Lately she has had problems with knee

pain... She has had back surgery and real problems with scar tissue

afterwards, surgery on both wrists, trouble with her ankles, trouble

with her teeth cracking, breaking, wearing down etc. etc. It is not

as if it is nothing... If she had a diagnosis, she would also save a

lot of money, because she would get coverage for a lot of things,

also going to the dentist and PT... But nooooope... She is a bit

funny that way... So I don't do anything. I have given her the info,

including telling her that locals not working is something that is

special with HEDS, that if she wants to check it out, I will help

her. The rest is up to her.

PS! I just saw your other post. I will look at the web site. If I

feel it worsening, I can just go to the ER or call them at the

beginning of the week before the easter holidays start. Or call my

ordinary doc's office. I did mention to him today that I am looking

into things. We have a national holiday starting Wednesday at noon.

Stores are open for a few hours on Saturday, but that is it.

Everything is closed until Tuesday next week. I will take it easy and

be careful. My legs are fine now. These things come and go, so it is

not constant. If it were constant for hours, I would at least call

the ER and talk to them so they could decide if I need to come in.

Aase Marit

>I believe Dr. Byers is right. I've heard others say that benign

>hypermobility is EDS 3 without the skin issues. Either way, it

>doesn't really matter - we all have about the same issues. I agree

>also, that there are probably thousands who have it and just think

>it's aches and pains or old age or whatever. I have tried to talk to

>several people about it and just get a blank look, or they don't want

>to hear it or something! I think it takes a pretty 'big' problem

>that hurts a lot before they start investigating it. Unfortunately,

>by then, more damage may have already been done!

[Guest guest]

> And, if Barb and her husband (Kerry? I keep forgetting his name! ) had a

kid, then they would be another, cause they both have it.

Precisely why we are NOT having kids.

> But, Dr Byers said a lot of dr's think that begnin hypermobility syndrome

and Ehlers danlos syndrome type 3 are the same thing. At least he thinks

so.

Some docs (especially in the UK) believe it is the same thing. Others still

consider them to be different. Hard to know for sure since the diagnostic

criteria are pretty similiar and there is no conclusive testing procedure to

prove on way or the other.

-Barb

[Guest guest]

Hi ,

I also thought my joints were normal always. You just don't know how

other people's joints feel, and it is not like you compare such

things, so of course it seems normal... And there's so many things

you just never think about... So many of the things we struggle with,

also happens to other people, it just happens more easily and more

often to us... And since we are such " klutzes " , even us think that

things happen because of that. It was funny once here when somebody

mentioned falling as she walked up stairs, and one after the other

says " me too " ... I always did that too, sometimes it was so

embarrassing... LOL

Last Friday when I sat on the plane to Oslo, I lost one thing after

the other. The man who sat beside me looked at me really funny, after

I had lost maybe 5-6 things down on the floor. I had to excuse

myself... LOL

One theory that has been mentioned about our " klutziness " , was that

our brains can't calculate how our joints hyperextends etc., so that

the " calculation " of how e.g. your foot will meet the stairs, is

wrong - and for that reason you end up falling, tripping etc.

Aase Marit

[Guest guest]

> >Hi Lana,

My legs are fine now. These things come and go, so it is

> not constant. If it were constant for hours, I would at least call

> the ER and talk to them so they could decide if I need to come in.

That's good, Aase, I just wanted you to know that's it's really

nothing to just mess around with. Please keep me in touch with

what's happening, OK?

Love Lana

[Guest guest]

>Hi again Lana,

I sure will! I was so happy to hear that you will not have to have

the surgery after all!!!! After all, that is the best thing, if it is

possible. An orthopedic surgeon on the arthritis newsgroup once said

something that is soooo true. You know how doctors often say " Oh, it

is nothing, it is only minor surgery " ... Dr. Merriman said that

" There's only one type of minor surgery, and that is surgery on

somebody else than yourself! " How true... And neck surgery is

surely not in the minor surgery category, no matter how you look at

it. I hope they can find a way to give you some relief without

surgery though.

It is not even 10 p.m. here and I am sooo tired. I think I may end up

in bed early today... I hope Peanut will be a good girl, she kept me

awake yesterday. She had a tummy upset, and wasn't all that happy.

She is all better today though... I feel so bad when she has tummy

pain. She has colitis. I only wish that I could take it for her, it

is so awful when she is obviously in pain and can't explain to me. I

can't do anything but give her a massage, rub her tummy and gives her

lots of TLC. When she doesn't feel good, she comes and want to cuddle

and have me make it all better, just like a child. Luckily it is not

often she has problems now, after she got a diagnosis... And she

is doing well on only natural things, she gets a probiotic and also

cranberry pills (to prevent UTI's, she had a really bad one) as well

as a special intestinal formula dog food which is really like

medication for her...

hugs,

Aase Marit

>That's good, Aase, I just wanted you to know that's it's really

>nothing to just mess around with. Please keep me in touch with

>what's happening, OK?

[Guest guest]

Oh!

I didn't know that!

[Guest guest]

> >Hi again Lana,

>

>

I hope Peanut will be a good girl, she kept me

> awake yesterday. She had a tummy upset, and wasn't all that happy.

> She is all better today though... I feel so bad when she has

tummy pain.

Poor Peanut! That's what kills me too, Aase, is when a pet can't

really 'tell' you what is wrong. I hated it with my kids also, until

they could talk, or at least understand and point to what hurt! Give

her tummy a nice pat for me too, and sleep well, Aase!

Love Lana

[Guest guest]

Re: Uhhh, EDS Type 3??? Hypermobility

One theory that has been mentioned about our " klutziness " , was that

our brains can't calculate how our joints hyperextends etc., so that

the " calculation " of how e.g. your foot will meet the stairs, is

wrong - and for that reason you end up falling, tripping etc.

Aase Marit

It's fact, Aase - the technical term is proprioception - just like you

said...we don't know where our body is in space so we're klutzes!!!

[Guest guest]

>

>

> Some docs (especially in the UK) believe it is the same thing.

Others still

> consider them to be different. Hard to know for sure since the

diagnostic

> criteria are pretty similiar and there is no conclusive testing

procedure to

> prove on way or the other.

>

> -Barb

I read somewhere online that the difference between benign

hypermobility and EDS was the problem with novacaine and other

topical analgesics.

[Guest guest]

>

>

> Some docs (especially in the UK) believe it is the same thing.

Others still

> consider them to be different. Hard to know for sure since the

diagnostic

> criteria are pretty similiar and there is no conclusive testing

procedure to

> prove on way or the other.

>

> -Barb

I read somewhere online that the difference between benign

hypermobility and EDS was the problem with novacaine and other

topical analgesics.

[Guest guest]

>

>

> Some docs (especially in the UK) believe it is the same thing.

Others still

> consider them to be different. Hard to know for sure since the

diagnostic

> criteria are pretty similiar and there is no conclusive testing

procedure to

> prove on way or the other.

>

> -Barb

I read somewhere online that the difference between benign

hypermobility and EDS was the problem with novacaine and other

topical analgesics.

[Guest guest]

> I read somewhere online that the difference between benign

> hypermobility and EDS was the problem with novacaine and other

> topical analgesics.

,

That was a study with a very small number of participants. They suggested

that more study should be done to see if it was a *possible* difference

between EDS & HMS, but I have not seen any follow-up research which proves

that the analgesics issue is different between EDS & HMS.

[Guest guest]

> I read somewhere online that the difference between benign

> hypermobility and EDS was the problem with novacaine and other

> topical analgesics.

,

That was a study with a very small number of participants. They suggested

that more study should be done to see if it was a *possible* difference

between EDS & HMS, but I have not seen any follow-up research which proves

that the analgesics issue is different between EDS & HMS.

[Guest guest]

> I read somewhere online that the difference between benign

> hypermobility and EDS was the problem with novacaine and other

> topical analgesics.

,

That was a study with a very small number of participants. They suggested

that more study should be done to see if it was a *possible* difference

between EDS & HMS, but I have not seen any follow-up research which proves

that the analgesics issue is different between EDS & HMS.

[Guest guest]

Barb - thanks for the clarification.

I've been reading everything I can about EDS these past three months

since the diagnosis. What I have learned is that there isn't near

enough good scientific research - that the condition is vast and

varied - and to take everything with a grain or two of salt.

I also learned long before I had a diagnosis that my body is unique

and it doesn't matter if the docs know what to call what is wrong

with me - what matters is to treat what's wrong.

> > I read somewhere online that the difference between benign

> > hypermobility and EDS was the problem with novacaine and other

> > topical analgesics.

>

> ,

>

> That was a study with a very small number of participants. They

suggested

> that more study should be done to see if it was a *possible*

difference

> between EDS & HMS, but I have not seen any follow-up research which

proves

> that the analgesics issue is different between EDS & HMS.