By Hesham on Wednesday, August 22, 2001 - 01:52 pm:

Hi,

My 4 years old daughter was recently diagnosed with EDS. We are still waiting for the test of type IV. Judging from the info I obtained on the internet, it seems that I have the symptoms of type III too. My symptoms, however, seem to be very mild compared to the complaints I saw on this message board which got me scared about the future of my daughter. She currently does not complain from any pain. She, however, has hypermobile joints and soft velvety skin. I am just asking if there are mild cases of this syndrom, or she will necessarily develop the pain problems in the future. Also, should we expect the hypermobility to get worse or better with time (I am hoping that as she gets older, she will tend to be less flexible but I don't know). I will greatly approacite it if someone with mild symptoms can give hope for the future.

Regards,

Hesham

By Lin on Wednesday, August 22, 2001 - 05:19 pm:

ok, hormones can cause flares of more pain and hypermobility, so it will get worse with time, the biggest jump happens during puberty. I am 16 and was diagnosed at 15. I had the painful joints all my life and was extremely flexible, had the scarring, etc, but was called a hypochondriac and i kept quiet until the pain got intense and the subluxations daily, which was when i was diagnosed with EDS 3. EDS is a progressive disorder, it will get worse until after menopause, because of hormones again. There is very mild cases and very severe cases. If your daughter isnt in much pain right now, she probably has a more mild case, but will most likely experience pain later. When i got older, i did get less flexible in moving into odd positions, but i also got more painful stiff joints and more subluxations from simple daily tasks. Who diagnosed you daughter? what specialty of doctor? you should talk to a genetic counselor, they can help you understand it alot better. Since you caught it at a young age, you can be prepared to avoid the things that would result in pain for her. I know i am paying for being such a rough energetic kid, and i am REALY paying for those 5 years in ballet... hope this helps!
Lin

By Joseph Renken on Thursday, August 23, 2001 - 07:46 am:

It really depends on what your child does to determine how much pain she'll be in when she gets older. I used my hypermobility as a ice breaker since I moved a lot durring school. Now my hips and shoulders are really paying for it. It really causes problems when the barometric pressure drops.

By Hesham on Thursday, August 23, 2001 - 08:54 am:

Hi,

Lin and Joseph, thanks a lot for answering. Lin, do you remember that you had pain in your childhood (i.e., 4 years old). My daughter does not complain of any, thank GOD, although we listen very carefully and encourage her to say what she feels. Sometime my wife is even afraid that we are overdoing it. I am still afraid that she is in pain and just not saying so.

In hindsight, we are very grateful that our daughter is not very athletic. She is more into coloring, reading, and craft works. She was diagnosed by a genetic counsler, I guess. She told us that she suspects type IV because my daughter has thin skin (she does not have the scarring or bruising, only hypermobility and soft velvety skin on some parts of her body) and that's why she will have the test. I think, however, that she has type III because of the family history (i.e., my symptoms and also I remember that my mother used to complain a lot from her joints). Anyway, she also told us that if she turns out not to have type IV, then WE SHOULD JUST LET HER BE! Nothing we can do to help her. If it turns out to be type IV, then she should avoid contact sports. From the info I gathered in the last couple of weeks, it seems that there is a lot we can do to help. Maybe the genetic counsler's opinion is based on her mild symptoms or maybe she did not want to scare us. I really don't know.

By Lin on Thursday, August 23, 2001 - 01:15 pm:

yes, i did have pain in my childhood, at 4 i dont remember specificaly except i was always a klutz, slipping, running into things, etc. when i was 4 i split my lip open running into a door jam. When i was in elementary school i had difficult in sports, i was not athletic then at all, i would hurt myself easily etc and was called a hypochondriac, so i never complained about my pain and since then have become very athletic, which has done more bad that good. a genetic counselor cant make a diagnosis, so you must mean a geneticist. a genetic counselor works with a geneticist and explains how to cope with whats wrong, and will explain to you about the herediatary portion of the disease. and about leaving her be, DONT! it doesnt matter what type she has, all types of EDS can be serious. I think its quite humorous that doctors used to refer to type 3 as BENIGN. look at the sufferers now, many in wheelchairs. She should avoid contact sports with ALL kinds of EDS, maybe you werent daignosed by a geneticist, because i doubt they would be so disregarding of the symptoms and treatments for EDS. My suggestion is find another doctor, i went through 4 before i found one that knew what they were doing and diagnosed me with EDS. They should never sugar coat anything so no to scare you, they are supposed to tell you the truth, its better to scare you now then leave you disregarding of seriousness and result in pain for your daughter later. do some research on EDS, there are some good links off this web page. I have type 3, but i still have to get cardiac echos regularly as a precaution (EDS patients are at risk for dilation and dissection of the vessels around the heart) and see a rheumatologist regulary besides physical therapy and other treatments. Since you have caught it early for you, your daughter will turn out better than i did so dont worry! if you want to talk any more, you can e-mail me at lin_171@hotmail.com
Lin

By Gwen on Thursday, August 23, 2001 - 06:11 pm:

What Lin said about things getting better after
menopause isn't correct in my experience.
Although I now have some degree of osteoarthritis
that limits my joint movements I still experience
continual pain and subluxations. Any of my joints
that have had previous trauma, sprains or more
severe, have never ever totally recovered and will
subluxate as a result of very little pressure.
Just recently I pushed down on a door handle and
subluxated my thumb. Lifting shopping from
trolley to car boot causes my elbow to hyperflex
and the joint to lock on me so that it clicks
painfully back into position when I bend it again.
My hips pop out, my sacro-iliac joints do the
same, my sterno-clavicular and sterno-costal
joints move out of alignment, my cervical and
thoracic vertebrae all slide out.

All I've found is that increasing stiffness with
age makes it harder to reduce the subluxation so
please don't go hoping that things improve with
age as they sure as Hell don't.

By Hesham on Thursday, August 23, 2001 - 07:18 pm:

Hi,

Thanks again for the answers. I am 30 now and my pain is very tolerable and I am hoping that my daughter will be similar to me. I read in the EDNF site that symptoms tend to be very similar in the same family. So if the parents have mild symptoms, it is more likely that the childern will have mild symptoms. From your experience, do you think this is true.

Also, in general, do girls tend to be more hypermobile than boys or not? I am just trying to compare my symptoms with my daughter's.

By Sharon on Thursday, August 23, 2001 - 08:44 pm:

Hesham,
I have not found this true I am the worst in my family,and my mother , siblings and grandparent had/have minimal symptoms, some of my neices/nephews are shopwing minor symptoms and one is showing a lot of symptoms ( I have been told that i probably don't have EDS but have a genetic hypermobility collegen/connective tissue disorder by the geneticist I saw as i don't have the soft or stretchy skin) I personally think I do have type 3 as i scar and bruise easily and I also have trivial mitral valve regurgitation and increased peak flow across my aorta and also pain etc and hypermobility. To make things more unclear it seems that I may possibly have blue sclera as the whites of my eyes are a grey colour instead of white, but the geneticist said that this wasn't so (me having blue sclera) and that blue sclera was part of OI not EDS.
Hope this helps
Sharon

By Sharon on Thursday, August 23, 2001 - 08:48 pm:

By the I am 30 and have been a klutz for as long as I can remember, always walking into doors, spraining my ankles, etc but i have gotten worse lately (since about 1993.
Hope this helps

By Silvia on Friday, August 24, 2001 - 05:58 am:

Hi Hesham,

I'm also 30 yrs old and was recently diagnosed with congenital hypermobility syndrome, based on the research that I have done I believe this is the same thing as EDS. I believe I have type 3 and am scheduled to see a genetecist soon.

I don't have much experience with this since I just started having problems a year ago. But I agree with Sharon when she says that symptoms can really vary among family members. I am honestly not sure if I got this from my mom or dad, since they have never suffered with pain problems. But based on the research that I have done and what I have read on different message boards, it is possible for family members to experience different levels of pain/symptoms.

Regarding my childhood, I was born with a hip/leg dislocation but wasn't diagnosed with anything at the time and my parents never knew it was due to hypermobility. I also suffered from bad leg pains once in a while but they disappeared as I became a teenager. Over all I had led a normal life until recently when I started experiencing chronic pain.

I really don't know if you should "just let
your child be" like they told you. I myself was very active and used to work out, jog, and bike ride a lot. I don't know if this did me more harm than good.....Anyway, a physical therapist who is familiar with EDS/hypermobility might be able to help your daughter with exercises that will strengthen and stabilize her. I saw a therapist with experience in this and he gave me some good stabilization exercises to do to help support my hypermobile back....

A treatment that thank God has really helped me is prolotherapy. Prior to getting it I could barely walk, now I can walk for 15 minutes at a time...and yesterday I was able to walk a little longer :-) Also, prior to the treatment I could barely sit down for 5 minutes due to very chronic low back/sacroiliac joint pain and now I can actually sit down to enjoy a meal or go out to dinner with my husband...I'm still in pain though, but not as bad as before...

I hope your daughter never experiences any type of pain problems. And if she does I hope there's already a quick treatment or cure for this condition. But if not I would suggest you research prolotherapy.

I've also read that hormones may affect hypermobility. My doctor tested me and I came out low on 3 hormones. I currently use a progesterone cream since I was really low on this one....

I have also found temporary relief and relaxation taking hot baths with Epsom salt or mineral salts. The epsom salt can be found at grocery stores. The mineral salts I buy at health stores and really like them because they come in a wide variety of pleasant scents.

Anyway, I hope this is helpful...and I really hope and pray your daughter never experiences pain like the rest of us on this board have.

By Hesham on Friday, August 24, 2001 - 07:55 am:

Hi Sharon and Silvia,

Thanks for the answers. It seems that the only thing we can do now is to try our best to protect her joints and pray that she doesn't develop any pain in the future. By the way, what is OI, my other daughter, one year old, does not have any of the EDS symptoms but I think she has a blueish sclera. During our visit to the geneticist, she looked at her quickly and told us she does not seem to qualify for any disorder. I just want to make sure.

Thanks

Hesham

By Lin on Friday, August 24, 2001 - 05:21 pm:

Sharon, you EDS is a collagen defect, and you cant have a collagen defect without it being apparent in all connective tissues, such as skin. Collagen is the main protien in the body, and all cells are made of it. You can have EDS with almost no skin involvement apparant though. I was diagnosed with having EDS 3 and it was obviously present in me by my terrible scarring and bruising only. I have huge gaping scars where i had stiches done very well and where there shouldnt have been a scar at all. I am covered in tiny scars from mosquito bites, and scrapes. Gwen, I am not past menopause myself, so i have no personal experience but according to research EDS is supposed to get better after menopause, but then doctors are often wrong.
Lin

By sheila on Friday, August 24, 2001 - 06:46 pm:

Just a thought, If EDS does get better after menopause then if someone had an early removal
of the uterus/ovaries would that stop or slow down the EDS?

By Sheena on Saturday, August 25, 2001 - 07:58 am:

We are rambling a bit from the original topic! I have had my uterus and ovaries removed. My bad back started some years after the hysterectomy, but before the removal of the ovaries, and continues to bother me. That is when I found out I have HMS (or EDS Hypermobility type - my specialist says they are the same thing.)

By Lin on Saturday, August 25, 2001 - 09:26 am:

well research says hormone flares cause laxity, such as during puberty and pregnancy, which is when a lot of people get diagnosed because they dont realize how bad it is till those points. And following along that line, after menopause the hormone levels in the body decrease, therefor doctors say we should be experiencing less hypermobility and pain. If you have your uterus removed, your body is still producing hormones, so i dont believe that would help. But Gwen even said it was incorrect for her, menopause did not decrease her pain. And we all know how often doctors are wrong, so...
Lin

By Gwen on Saturday, August 25, 2001 - 09:31 pm:

Mt hypermobilty and associated pain became worse
during my first pregnancy. Prior to that I'd
always had vaguely sore joints and used to sprain
ankles and wrists with monotonous regularity as a
kid but never thought much about it as my Mum and
Nana just said "It runs in the family".

When I was about five months pregnant one of my
ankles gave way under me and I had a massive
sprain with black streaks right up my calf and was
off work for a couple of weeks. The doctor said
it was a result of the hormones produced in
pregnancy. As well as making the bones of my
pelvis relax for the birth process all other
joints are affected...but not to worry as
everything would tighten up again after I'd had my
baby.

WELL IT DIDN'T. After years of misery with now
PAINFUL rather than just sore joints, a ruptured
disc that was undiagnosed because I could bend
over and touch my toes, a subluxated shoulder
joint from minor force etc etc. I finally saw
Julian Kirk, who as I've often said, was the
person who first wrote about HMS as a disorder.

He said that the joint laxity was the result of
the hormone Relaxin causing ligaments to relax.
Most women's ligamenst will contract back again
but for some of this doesn't happen and they are
left with sloppy joints which are more liable to
sprains and subluxations.

So I guess, as far as it goes, my hypermobility
has a hormonal cause but in 'normal' women this
would happen in pregnancy any way. The difference
is that my ligaments forgot to go back afterwards.

I have become aware over the years that the
joints that subluxate are ones that have been
injured or traumatised in some way. Those that I
haven't injured such as most of my toes and my
right TMJ (and that's about it) act normally apart
from the odd ache but joints that have had even
minor trauma subluxate or give way at the most
inconvenient times. Trauma can even be something
as minor as rolling over in bed or stretching!

Although I'm physically quite strong I now find
it harder to lift or carry weights because of the
stress to my joints. I recently went for a
cervical spine X-ray and had to hold two 2litre
bottles of water for about 10 seconds during the
procedure. That was enough to stuff up my neck
for the next week. Turning a door handle
subluxated a thumb joint. It's not as if I'm ever
doing anything heavy when the problems occur.
Maybe that is part of the problem. If I'm lifting
bales of hay or working with livestock my muscles
are braced and protecting my joints but the little
movements catch me unawares.

So I do agree with what you say Lin about hormonal
flare-ups exacerbating HMS to the point where it
becomes diagnosable but once ligaments have become
sloppy after the affect of hormones they just
don't regain their former elasticity. Arthritis
may lessen the articulation of joints but it
doesn't seem to have any effect on the ligaments
holding the joints in place.

By Mar on Sunday, August 26, 2001 - 03:59 am:

Looking at my own body, at age 20, I don't think menopause will fix much. Even if my ligamnets get more thight then, I think I won't even notice it much because of the way I will have injured, stretched and wore them out in the 45-50 years prior to menopause.

By Sharon on Sunday, August 26, 2001 - 05:45 pm:

Hesham,
OI is Osteogenesis Imperfecta and is a disease/disorder which causes brittle bones etc and can cause many fractures (but I dont fracture so they ruled this out too.But Blue sclera is common in this.

By Hesham on Sunday, August 26, 2001 - 06:34 pm:

Sharon,

Thanks for the info. My daughter does not fracture, Thank GOD, so I guess I can also rule this out.

Hesham

By Kit on Saturday, September 25, 2004 - 05:39 am:

Hi Hesham,

My sister was diagnosed with EDS just a few weeks ago. She is 35 years old now, and was living a very normal live up until now, except for some small indicators, which we now recognise as symptoms. The last two years she developed unusual flexibility in her arm, which led to problems and just this year her some of her limbs. Up untill now that's it. And we're hoping that will be all.

Hope this helps.

Kit