By Anne on Friday, November 07, 2003 - 02:23 am:

After years of searching as what could be causing my different pains, I was told my joint pain is due to hypermobile joints. Haven't been diagnosed with anything, though. People say it looks like EDS, but it's not it since I have minimal (almost no) skin involvement. My skin isn't stretchy or velvety. I scar normally. Doctors say they can't make anything more out of it except for 'some connective tissue problem.' You guys know more?

By Michelle Castle on Saturday, November 08, 2003 - 12:43 am:

Anne,

I have similar problems with my doctors. The first one said I was hyperflexible, then one rheumatologist said I said Hypermobility Syndrome, my treating rheumy just calls it hypermobility but doesn't seem to know it has a real name, my primary physician also sticks with hypermobile. My hand surgeon, of all people, was the first doctor to ever mention Hypermobile EDS, but he isn't familar with Hypermobility Syndrome.

Hypermobility with painful joints is the primary symptom of several defined disorders. The differences between each of the disorders is hotly debated within the medical communinty. The list includes Hypermobility Syndrome, Benign Congenital Hypermobility, benign joint hypermobility syndrome, the Hypermobility type of Ehlers-Danlos, the Classical type of EDS, as well as other connective disorders where hypermobility occurs along with other symptoms.

Hypermobility Syndrome (HMS), benign joint hypermobility syndrome, and Benign Congenital Hypermobility are the same thing. (Benign is used in much the same way as in differientiating between benign and malignant tumors. It doesn't mean it's not serious, just that it's not life-threatening as other connective tissue disorders can be.) HMS and the hypermobility type of EDS may or may not be the same thing, depending on who you ask. If they are different conditions, HEDS requires a finding of hyperextensible skin; without it, one has HMS. But there are manu who say HEDS and HMS are the same thing, and the stretchyness of the skin doesn't matter in diagnosis. The Classical type of EDS always involves the skin though, and the skin is easily bruised and torn.

I've decided not to worry about whether I have HMS or HEDS, as they are so close, if not the same thing, that the treatment is the same. Since my surgeon asked about HEDS, I asked him if I should try and get formally diagnsed. He advised me not too, saying it would possibly cause problems with insurance companies in the future, and wouldn't make any difference in my treatment plan anyways.

But if you want to ecucate your doctors on it and get a solid diagnosis, here are a couple links to check out.

http://www.ednf.org/whatisit.php - What is EDS?
http://www.hypermobility.org/whatishms.php - What is HMS?

This article from a medical journal covers the topic really well, but may be confusing. The link isn't posting right on here either, so you need to copy and paste it into your browser to open it instead of just clicking on it (including the 80/2/188 part).
http://adc.bmjjournals.com/cgi/content/full/archdischild;80/2/188 - Joint hypermobility and genetic collagen disorders: are they related?

Michelle
hypermobility.blogspot.com

By Anne on Monday, November 10, 2003 - 01:14 am:

Michelle-

Thanks for the info. I intently read the article by prof. Grahame. Interesting, really.

I also found some people say the hypermobile form of EDS is the same thing as the hypermobility syndrome. But of course some people say it isn't, so I don't know what to believe.

You say if they are different, the difference lies in stretchy skin. Well, I found somewhere that this is seen in classical EDS, and hypermobile EDS just requires having soft skin.
I think my doctors also don't know about the existence of HMS, or just don't believe hypermobility can actually cause problems, as one doctor told me. Anyway, I do fulfill the two main criteria, as well as two or three of the other criteria.

One other point, still: some say striae is seen a lot in EDS, some say it is seen less, because the tissues will be very stretchy, and it won't tear. I really want to find this out, since this is about the only skin problem I have.