Tuesday, January 31, 2006


My son twisted his ankle on friday night. A sort of frequent occurance that we can now blame on having EDS . Saturday he came down with a cold that turned into brochitus Monday night. After a trip to the doctor for a breathing treatment and a scrip for antibiotics he is doing much better.

Today I also got the results of the echocardiograms my kids had on Monday. Thankfully both were in the normal range, (they measure the aeortic root diameter) but they said my son was on the high end of normal and should have another echocardiogram in two years instead of five years. Now I just have to find a doctor myself so that I can get my echocardiogram. We are supposed to have them every five years from now on. My nephew who was diagnosed with EDS first is in very bad shape physically. They are putting him in a wheelchair because his shoulders kept dislocating on crutches. The doctors say that his ligaments should eventually start tightening up again and then he can start doing hydrotherapy. Hopefully some of the damage can be reversed, although he will never be pain free. It is hard to believe that normal fitness activities, most sports and workouts can cause my family permanent debilitating damage. The genetecist said no contact sports, nothing that has repetitive impact on the joints, no weight bearing workouts or excercise that would involve stretching or lengthening the tendons. My yoga days are over :(


  1. Sorry this is happening for you Judy. Be strong. Learning to be strong can be your biggest asset.

    My dd was a 12 Varsity Letter holder and played college softball. We do know how fortunate we were, and we learned alot in the process. As a baby she suffered something called "Nursemaid's Elbow". Her ligaments were very loose, (and she was a bit of a thing!) and as a baby I offered my fingers for her to pull-up with. After that horrible clunk of a dislocation, I thought I broker her arm. It happened frequently (both elbows were effected) until the age of 4 when the Dr. decided to try casting her arms! Now mind you this was 25 years ago, so treatments have changed, lol. My 4yo then had casts on her arms. Luckily that was enough to make the ligaments tighten-up.

    There are all different successes in life, your family will find many.

  2. To give your sons a "bright spot" in all this... they won't be able to help every college buddy move!

    I have loose/stretchy ligaments which give me any number of problems, but I can't imagine what your family is having to learn.

    But seriously, no repetitive exercise.. no weight bearing exercise... what kind of physical activity CAN you do?

  3. Debra beat me to what I was wondering. Did the doctor give you any specific recommendations about what sorts of physical activities you and your kids *can* do without causing injury? From a cardiovascular point of view I'm sure they'd want you to incorporate some level of activity, but geeze, those restrictions are, well...very restrictive. It sounds so frustrating. Sending good thoughts your way.

  4. The doctors have said swimming, walking and biking. i am thinking we must have a few more options so i am hoping we can see an occupational therapist for some help with this. but finding one knowledgable with this condition could be a challenge. I have been reading everything I can get my hands on and finding that it unfortunately has a lot of similarities to fibromyalgia. My sister was diagnosed with that two years ago. Fibro has some real restrictive types of exercise as well, so if I find a therapist who deals with that and osteoarthritis i should be okay.

    i think there are probably more people than we realize with this condition because i have seen people do things on tv in the past as entertainment that i now know are clearly EDS, they just havn't gotten to the point where the chronic pain has set in, so they have no idea what they are doing is going to give them early onset arthritis.

  5. Judy, I will share what helps me, to address what needs doing medically without attaching an emotional judgement to it, but develop a matter of fact attitude, and concentrate and celebrate on what joys I can create or that come my way. The times when I'm not successful, I created a blog just to dump the anger, frustration, sadness, etc. as a way to contain it and not let the draining emotions run into other aspects of my life. I then let it go and give myself grace for the negativity.

    Hangeth in and peace with what you and your family are dealing with.

  6. Anonymous1:20 PM

    Mild Yoga does not stretch the ligaments or tendons. With a good practitioner you will be okay. Your body will tell you. I too have EDS. I have just started 3 months of Pilates with a trainer who is also loose ligamented. In my form of EDS keeping my muscles toned is paramount to keeping the stress off my ligaments. I do muscle stretching but no deep stretches. Ice skating and walking have been good for me in the past. But with any new activity I need to start slowly, I get more aches and pains in the beginning of any exercise plan.


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