Posted by maria on 1/9/2007, 1:46 pm, in reply to "EDS, and other related? problems." I am not sure how many people actually use this board nowadays Most of the posts I see relate to spam :-( . That is quite unfortunate. I am not qualified to give much more than opinions. but I may be able to point you in a few directions for your own research. I don't have a diagnosis either, but am hypermobile. I have been pointed towards core exercises to help strengthen muscles (hypermobility can be caused by loose ligaments, so muscles are often overworked taking over some of the tasks). Proper arch supports are helping my back. But there is quite a link between hormonal cycles and ligaments loosening more and causing more pain, I am not sure what can be done for that. I guess you have probably read about defective collagen being one of the suspected causes which can affect many different parts of the body, including digestive problems and some tooth problems. For caved chest, check out the term "pectus excavatum". I think that it is not necessarily indicative of problems, but you might also want to look up Marfan's syndrome, it has some stuff in common with EDS. Personally, I may just have something which is called Benign Joint Hypermobility Syndrome (BJHS), or Joint Hypermobility Syndrome (JHS). It seems to boil down to being hypermobile and having some number of related problems. Some people seem to think that this is a mild form of EDS-hypermobility type. I have been reading the forums associated with the site www.hypermobility.org (you can get to them directly using www.hypermobility.org/phpBB2/index.php). It is an UK based site where some of the people posting have EDS and other hypermobility-related problems. It is helpful in determining what is "normal". I am not quite sure why you would need to have health insurance to start getting tests done. I guess that has something to do with where you are, I think that quite a bit is covered under provincial health insurance here in Ontario. It may be worth finding out how long it takes to be referred to a specialist. I think a real diagnosis probably takes a rheumatologist or geneticist. Where I am, the waiting time to see a rheumatologist is over a year, so it may be worth getting the wheels in motion early. I am sorry that I cannot be of more help, but if you are interested, I might be able to point you to more sites that I have seen. But check out that hypermobility site first, it is probably the most helpful one that I have found. ...Maria --Previous Message--
Hello Raquel,
: I haven't been diagnosed yet, but I
: wanted to share some of my symptoms
: with everyone. It seems my health is
: deteriorating at a disturbingly
: quick pace, and I'm only 21.
: I've always been very hypermobile,
: in all of my joints. I have frequent
: hip and shoulder dislocations
: (although strange and unnerving,
: they aren't painful), and my knees
: have recently been popping and
: disturb me greatly with pain. I have
: fairly bad scoliosis and I have
: chronic back pain. My right leg is
: also shorter than my left leg. I do
: not have bad scarring, but I have
: horrible, wide and long stretch
: marks nearly all over. My skin is
: soft, pale, and veiny (I also
: started to get spider veins at 15).
: I have the characteristic facial
: appearance of someone with EDS. My
: skin isn't stretchy though, but I
: have a hard time healing. I have
: temperature and food sensitivities,
: I also have very frequent bladder
: infections and painful urination (my
: father who is 40 and has
: hyperextension only in his hands has
: already had 3 kidney surgeries to
: remove stones) and I'm nearly always
: constipated. Occassionally I have
: severe abdominal pain (for one time
: as long as a few months, and I went
: to get an ultrasound because I
: thought I might have a tumor or
: something, no one ever found out
: what it was, and the pain eventually
: went away) and calf and foot cramps.
: I have poor enamel on my teeth, one
: of my teeth (as an adult and baby)
: grew in without enamel at all. I was
: born 8 weeks premature and was very
: slow to walk. I have problems
: exerting myself (was diagnosed with
: exertional asthma), and keeping
: muscle tone. My skin is in general
: saggy because of this (even in
: attempts to tone up). I have very
: severe periods (in any way you can
: imagine) which have been slightly
: more regulated with the use of birth
: control. The only other thing I
: experience is numbness, tingling,
: and coldness in my extremities.
: Not sure if I have EDS, although I'm
: pretty sure that I do. I should be
: getting insurance fairly soon, and
: then I want to talk to my regular
: doctor about it and get tested. I
: was wondering if these symptoms are
: common in people with EDS, or if
: people with EDS can have symptoms
: from multiple types of EDS?
: Thanks in advance for any advice or
: answers you can give me.
: I have 3 half siblings as well. My
: little brother (11) seems to have no
: problems at all. My little sister
: (2) has a myriad of unexplained
: health problems (labored breathing,
: wheezing all the time, she makes a
: phelgmy sound when she breathes 100%
: of the time) and is nearly always
: sick, she also has a caved chest,
: not sure if that relates to EDS. My
: little brother was just born in
: December 2006, so I'm not sure if he
: displays any symptoms.
:
Message Thread
« Back to index