By Michaela on Monday, June 05, 2000 - 05:33 pm:

I was diagnosed as hypermobile in 1995, this was because of pain in my hips.
But since then, instaed of becoming more stable, asI was told, I'm getting more problems.
I'm wondering if perhaps I was given a lie-to-patient whereby I wasn't explained the full implications.
I'm starting to get allergy like symptoms, and the number of muscle 'pulls' I'm getting is icreasing, and from mainly silly little things. At the moment my hamstring is
sore and I've got a very painful intercostal.
I'm getting very bad sinusitis, and itchy eyes in the morning, runny nose, PND.. and apparently acid reflux.
My menstral cycle naturally is very very scewed, and the medicine I'm on helps, but I've stalled the cycle for several moths because of the pain.
I'm myopic.
I bruise easily.
I got deep long stretch marks when I was 12! 12. I had my big growth spurt of a good 4 inches in the next 6 months.
I get bleeding noses for no reason.
I have very low blood pressure, enough to make me fall to the floor if I stand up quickly.
Now, my doctor sees all these as causes in and of themselves, ie; I am low in energy because of the low blood pressure.
I have sore joints because I'm hypermobile.
Yet scrolling through these pages, I see all my syptoms and they appear to point to a common cause, that they are symptoms themselves.
Oh, I also had some antiRNA which led some doctors to think of an autoimmune disorder. It was low, but it's somethingnmy mother has too.
Most of the women in my family have all or most of these symptoms, so there is a genetic link.
I need some hel, I'm going crazy with conventional doctors.
ANyone know where I can get help in NZ?

By Sue C. on Monday, June 05, 2000 - 05:33 pm:

Sounds like EDS to me. Perhaps with something else besides or a mix of EDS III & EDS IV.

Suggestion: use the "search" feature of this web page to find other New Zealanders.

Other forms of EDS also affect the heart and its valves. I recently had an echo-cardiogram (ultrasound) of my heart to make sure it was fine.

I'm not convinced that the EDS studies that I've seen are very good. Some mention that it's a dominant gene, yet many of us have no idea where it came from in our
families.

You will probably be more unstable as time wears on. Your joint tissues will continue to stretch out throughout your life. It's a matter of learning to live with it. (I've
found that keeping joints slightly bent during lifting and motion keep joints from dislocating/ subluxing.

How tall are you?
When did you reach this height?

(I stopped growing at 11. 5'8". My stretch marks appeared at age 7!)

I hope you find good medical care! Keep "shopping" until you do.

By roberta rak on Monday, June 05, 2000 - 05:33 pm:

regarding your myraid of symtoms: it is possible that
you may have an autoimmiume disorder,and one of those disorders
is rhematoid arthritis,which can be diagnosed with a blood test called a sed. rate

By Eve on Monday, June 05, 2000 - 05:34 pm:

I can sympathise with you, I myself have many health problems which I'm sure are related in one way or another.

I have polycystic ovarian disease, menieres disease, rhuematiod arthritis, I get sinusitis, low blood pressure, hearing troubles due to the menieres disease.

One thing that puzzles me is that I haven't grown to my full height, I should be around 5ft 8 - 5ft 10inchs tall, when I am 5ft 3 1/2inches!

By Janie on Monday, June 05, 2000 - 05:34 pm:

Hi Michaela,

Have you looked at any Ehlers-Danlos Syndrome sites on the internet? If you go to a search engine (I use www.savvysearch.com) and type in ehlers-danlos, you
will find several sites that discuss this.

I've been told that reflux, sinusitis, sore joints, stretchmarks, muscle pain, eye problems are all typical of Ehlers-Danlos. In some places, doctors believe that
Hypermobility Syndrome (HMS) and Ehlers-Danlos Type III (or Hypermobility Type) are the same thing. Some people think that if you only get HMS in later years,
that it is not Ehlers-Danlos. If you had stretchmarks at age 12, you probably are looking at EDS.

There is hope out there. Keep posting here with you concerns and questions and I'm sure you'll find that you are not alone.

I will send another posting that lists all of the sites that have been useful to me in some way or another.

Best wishes,
Janie (EDS-Hypermobility Type)

By Janie on Monday, June 05, 2000 - 05:35 pm:

Hi again Michaela!

Here are some EDS & Hypermobility links that have been useful to me. I hope they help.
Best wishes,
Janie

http://members.home.net/ceda/
Canadian Ehlers-Danlos Association
Check out the articles on this site.

http://www.foothealth.com/06.htm
The Walking Foot

http://www.immunesupport.com/
Fibromyalgia

http://www.footmaxx.com/system/gaitanalysis.html
Footmaxx Gait Analysis

http://www.ednf.org/
Ehlers-Danlos National Foundation (U.S.A.)
Check out the articles on this site.

http://www.marge.com/bboard/bboard.html
Hypermobile Joints Forum

http://www.apta.org/pt_journal/June99/public/v79n6p591.html
Russek (Geneticist) on Hypermobility Syndrome, June 1999

http://www.hmsa.freeserve.co.uk/
Hypermobility Syndrome Association (U.K.)
Check out the articles on this site.

http://www.uggen.net/edstoday/
EDS Today Newsletter

http://www.hmsa.freeserve.co.uk/painand.htm
Dr. Graham’s article on Hypermobility – the probability that it is really EDS.

http://pluto.beseen.com/boardroom/c/18592/
EDS Message Board

http://www.leaderpro.com/eds/
Working to Wipe Out EDS

http://www.sacs.ucsf.edu/home/cooper/Anat118/ConnTiss/conntiss2.htm#ClinCorrel
Connective Tissue

ceda@topica.com
Subscribe to mailing list of Canadian EDS Association

http://www.drizzle.com/~kdavis/sabednf/
Seattle Support Group

http://www.silcom.com/~sblc/hypermobl.html
Hypermobile Joints

http://www.arthritis.co.za/hypermobile.html
Hypermobility by Drdoc

http://www.healthcentral.com/mhc/top/003295.cfm
Hypermobility HealthCentral

http://www.atv.ndirect.co.uk/
UK EDS Support Group

http://www.arc.org.uk/about_arc/ahome.htm
Arthritis Research Council (Search: hypermobility)

http://members.tripod.com/totallyhip/index1.htm
Hip Replacement at age 32

http://www.bayviewortho.com/news/mini-thr.htm
Minimally invasive total hip replacement – John’s Hopkins

http://www.rasupport.webprovider.com/Diagnosis%20&%20Rx.htm
RA Support – often shows people with multiple diagnoses

http://www.atv.ndirect.co.uk/Info%20Sheets/osteoporosis.htm
1999 article on EDS & Osteoporosis

By Michaela on Monday, June 05, 2000 - 05:35 pm:

Thank you so much. I'm very apprediate of the effort you put into that list of links:).
I hate looking at medical sites as I feel I'm being a hyperchondriac, yet I know there is something not quite right about the situation I'm in.
I did a lot of research at University, as I gained my BSc in Biology (genetics and plant pathology) and in my final year was taking immunology.
It was the person who diagnosed me as Hypermobile that taught me that paper.. weird coincidence eh?

And of course, who would think to tell a foctor that you had stretch marks at the age of 12 when you are talking about joint pain;)?

The fact that some dostors think Hypermobile (type III was it?) and EDS are the same thing is a comfort. Perhaps he didn't want me to worry.
Thing is, as a scientist, I do like to know more, a lot more. Clinical trials etc. And all I was given was a handout on how flexible you need to be to be classified.
There was very little in the medical shelves of the Bio library, but EH did come up a lot of times.
I believe there is a stronger tendancy for females in the family to get it? A gentetic link of some sort.
Still, even my brother, who is a lean musclty 19 year old has stretch marks on his legs.


Again, thank you for all your help, I'll be contacting the NZ EHD association to find out more, and to see if I just happen to have a whole lot of coincidences;)

By Janie on Monday, June 05, 2000 - 05:36 pm:

You're very welcome! I'm happy to help in any way I can.
Best wishes,
Janie

By Barbara on Sunday, January 14, 2001 - 06:21 pm:

Michaela,

I doubt that your doctor was telling you a lie on purpose. It is more likely that he/she simply isn't aware of all the complications that come with EDS. Most doctors are told in medical school that EDS is so rare they are unlikely to see a patient with it. Then the medical information available until recently has been sparse and inadequate.

As for assistnace in New Zealand, there is a support group there. http://www.edfnz.org.nz/ is their web-site.