Re: Introducing myself too

[Guest guest]

Leena

WELCOME!!! I'm a 36 with Hypermobility Syndrome (HMS) I live in Australia and

have 2 kids of whom both look like they have Hypermobile joints and skin. So

far though... the kids have had no major injuries. Like you I have the elbows,

knees, back and what have you - happening quite a lot. You may have seen, from

my recent posts, that I dislocated my Peroneus Longus tendon in my ankle and I

am laid up, so I look forward to seeing lots of posts from you. <Smile> You

won't find a better place filled with Warm, Loving, Caring and compassionate

individuals.

So grab a cup of something you like and pull up a pew or sit on the floor, and

enjoy the wealth of information that these folks have to offer. <Grin>

Again Welcome...... and..... Hugz................ Helen

Encouraged by Kris I also decided to introduce myself.

I'm 27 yrs old researcher from Finland. Me, my sister and my mother have

Classic Type of EDS. I scar easily, all my joints (exept my sceleton) are

hypermobile, elbows, shoulders, hips, knees, fingers, toes and ancles get

out of their place. I usually get them back on their place myself. I'm not

able to use my right hand because of the pain (I'm right handed).

I have quite a lot of problems with my back - its hard to sit, walk or

lay - doctors presume I have severe ostheoporosis there.....

[Guest guest]

Welcome Leena! My name is Ginley and I have the vascular type of EDS.

I am 36 yrs. old, married, and have three children. Sorry to hear you are

having so many struggles just now. I live in Buffalo, NY, in the US. We too

have snow, and lots of it, with temperatures much lower than 0 celsius. I

agree very bad weather for EDS. But we do have change of seasons here, with

summers which are nice and hot--just the way I like it. So nice to meet you.

Take Care.

Love, Sue Ginley

[Guest guest]

Leena, what a beautiful name!

Welcome to our CEDA family I hope that you will find a wealth of information

here as well as much support

Donna G

Canada

[Guest guest]

Hi Leena,

Welcome! My name is close to yours, it's Lana - with a short a sound like

apple.

I'm from Omaha, Nebraska in the middle of the US. It gets cold here also,

but this year, fall has been unusually mild. YES - I LOVE IT! I'm 50 and

have hypermoble type of EDS. The only mouth problems I've had is some enamel

loss. My son had receding gums and had to have mouth surgery to correct it.

Both my son (27) and my daughter (23) have EDS also. Poor things. I also

have osteoporosis and osteoarthritis and IBS. My back has really been

hurting lately, but it's probably from sitting on the floor and wrapping

gifts. Couldn't do it at the table, that would be too easy! DUH! Sometimes

I'm such a twit. I get lots of headaches but I have never had a migrane,

thank God. I want to do warm water therapy again this year, but the lady

hasn't called me back yet. I'll try to call her again Friday. Warm water is

about the only time I don't hurt, how about you?

Nice to have you with us!

Love Lana

[Guest guest]

Hello Leena!

My son also suffers from chronic migraines, he also takes injections of

Imigran at the ER. You have far more than he does, he only has them

about once a month, and is completely unable to avoid them. Like me he

is HEDS.

I also have a very restricted diet, the only thing I can eat with

comfort is fruit, no coffe, or meat of any kind, otherwise my diet is

the same as yours.

no snow here yet, (I agree cold is HORRIBLE weather to have EDS.

e

USA

[Guest guest]

Leena, welcome to our family, you have mush to offer and we have much to

learn together!

Welcome welcome!

Jill

[Guest guest]

Leena, welcome to our family, you have mush to offer and we have much to

learn together!

Welcome welcome!

Jill

[Guest guest]

Leena,

Welcome! I've been off work for a year, too. I am applying for

disability/retirement which means that I am kinda permanently

disabled. I am adjusting to that idea now, but it was difficult at

first. No one else in my family has a diagnosis, but then they

don't like going to doctors. I have a diagnosis of hypermobility,

but not EDS, yet. I am hypermobile in all my joints. I have velvety

skin, but not stretchy. I had a lot of trouble with sleep until I took

melatonin. I also take zanaflex for muscle spasm and benedryl

for allergy. These help me get sleepy. I use a C-PAP machine for

my sleep apnea.

I'm sure you will learn lots from this list, as I have.

--------------------------

Nanette, depression, anxiety, HMS/FMS.

Mom to: Austin, 13, brain damage, bp1, DD, OCD; depakote,

wellbutrin, zyprexa, topamax; non-public school placement with

1:1 aide, Speech, OT, respite(when workers are available).

Caitlin, 17, living with dad in montana.

We're in Calif.

> Hi There!

>

> Encouraged by Kris I also decided to introduce myself.

>

> I'm 27 yrs old researcher from Finland. Me, my sister and my

mother have

> Classic Type of EDS. I scar easily, all my joints (exept my

sceleton) are

> hypermobile, elbows, shoulders, hips, knees, fingers, toes

and ancles get

> out of their place. I usually get them back on their place myself.

I'm not

> able to use my right hand because of the pain (I'm right

handed).

> I have quite a lot of problems with my back – its hard to sit,

walk or

> lay - doctors presume I have severe ostheoporosis there.

>

> I suffer also from chronic migraines – for migraine I take

Imigran injections.

> Sometimes I need to go to ER for those migraines. On easy

weeks I get only

> one migraine and on bad ones I have five of them. I've tried all

migraine

> resistance treatments from epilepcy meds to hypnosis – for

nothing.

>

> For joint pain I've eaten Tramal 200 mg daily and some pills for

rheumatic pain

> and general pain management. For sleeping I need medicine

too. I go to warm

> water therapy twice a week.

>

> I'm extremely tired all the time – getting some sleep won't help

for that. I've

> not been able to work for almost a year now. My workplace at

the Tampere

> University have been amazingly patiet with me and my

situation.

>

> I'm going to hospital before X'mas for more tests and

scannings. Before that

> I'm going for a course aimed at patients suffering from chronic

pain.

>

> I've noticed some of you have malabsorption. I can not eat

glutein, milk

> products, fruits or vegetables, neither can I drink soft drinks,

bear or tea.

> Only coffee allowed which I don't drink at all.

>

> Anyway, I try to enjoy my life with my lovely husband and our

stupid chihuahua.

> On bad days I watch videos (I cannot hold book on my hands –

too heavy right

> now)or listen to the radio. Sometimes on better days I go to my

work room for

> couple of hours, shopping with my friends or they come to see

me.

>

> We have winter here in Northern Europe – a little bit snow,

around 0 Celsius

> degrees,wind and hail storms and almost no sun. Talk about

bad weather to have

> EDS!

>

> I would be very gratefull for any information, articles or

experiences you'll

> share (and have already).

>

> Leena

> Tampere

> Finland

[Guest guest]

Nanette

I am also unable to work, and am on social security disability. It can

be a very difficult adjustment. Nobody in my family will go to the

doctor either. I take zanaflex as well, how does it work for you?

e

[Guest guest]

Nanette

I am also unable to work, and am on social security disability. It can

be a very difficult adjustment. Nobody in my family will go to the

doctor either. I take zanaflex as well, how does it work for you?

e