Increased Flexibility In Core Area, Is This Normal?

[looneymom]

Since my son had the flu in January, I have noticed his flexibility in his core area has really increased. This kid can literally bend all the way over from a sitting position on floor and just lay there with his hands stretched out in front of him. He did this for the physical therapist the other day. She said that most normal people do not have this much flexibility. When he was first seen by MAYO two years ago, he was not able to do this. Is this due to loss of core muscle strength? He is going to see his cardiologist next and I will mention this to him. Before he got the flu, he was able to do bridges on the floor. However, when he attempts to do them now, he starts to shake and tremors usually start. So at this point, we don't press him to do bridges. Could this be the start of EDS? Has anybody else experienced this?

[Katybug]

I am diagnosed with Hypermobile EDS and I can do both things you describe. But, I wanted to mention 2 things....first, flexibility is not a sign of lack of strength in a muscle group although it can indicate laxity of other parts of the soft tissue like ligaments and tendons, and, second, while it could be a sign that your son has EDS, it may not mean that either.

If you have other reasons to believe that he may have EDS, the only way to know is to get him to a physician that is well versed and well respected in diagnosing EDS. I have found that there is a tremendous misunderstanding even among doctors who "think they understand what EDS is". The diagnosis is much more complicated than just determining whether or not someone is hypermobile and there were many signs/symptoms that my geneticist pointed out that I have that I always thought were normal...like I had no idea that I have a very high soft palate. You'd think all the doctors that have told me to open up and say "aaaa" would have noted this. Or, all the doctors that have looked in my eyes and never mentioned that I have very blue schlera (white part of your eye.) They don't know that this in combination with many other things can lead to an EDS diagnosis and they also, therefore, don't really understand all the implications of how the disease affects the body up to and including being a cause for POTS (flacid venous tissue not pumping blood around for us like it's supposed to.)

So, I don't think I'd worry just yet that it is EDS related, but, if you want more information on how each type of EDS is diagnosed, www.ednf.org is a great resource for information.

[looneymom]

Thanks Katie for the information. He really does not have many of the symptoms but it's surprising to see this much flexibility. He does complain of lower back pain and had a lower back x-ray last week. All was in normal range.

[Tobiano]

Hi looneymom,

I really don't know a lot about EDS so can't comment specifically on that. I just wanted to share that when I'm more symptomatic - to the point where I feel safer sitting on the floor than in a chair - I tend to have decreased tone in my trunk and have to sit with my hands propping on the floor for stability.