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Chronic pain and Ehlers-Danlos
11 months ago  ::  Jul 10, 2011 - 10:35AM #1
REteach
Posts: 12,217
Ehlers-Danlos syndrome, hypermobility form, is a connective tissue disorder.  People with EDS are typically "double jointed".  In childhood, they have problems with growing pains and may get more tired walking than other kids.  Easy bruising and slow wound healing is common. Some people have more cavities than others.  

As the kids get older, they may have more problems with dislocating joints or frequent sprains.  

Headaches, heart palpitations, constipation, joint pains, poor sleep, and heavy periods are common.  People may notice that their pain gets worse when storms roll in.  

This is an autosomal dominant genetic syndrome which means that any person who has it has a 50-50 chance of passing it on to their children.  It also means that usually there is a mother or father, sisters or brothers, who also have problems. Symptoms are often less severe in men because they have more muscle bulk. 

A Beighton score of 6 or above is associated with EDS. Adults may no longer be as flexible as when they were kids, and a diagnosis may be made on history 

If you think you have EDS, you can find more information at EDNF.   A good book is 
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Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome by Brad Tinkle.

I bring this up here because a lot of people with chronic pain who may have been told "it's all in your head" actually have EDS. It explains a lot of things.  You can be diagnosed by a geneticist, although some Orthopedics and Rheumatology doctors feel comfortable making the diagnosis as well.  

The best treatment is an exercise routine with emphasis on strengthening and toning.  A good article for physical therapists is: 


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Curr Opin Rheumatol. 2011 Mar;23(2):131-6.


Joint protection and physical rehabilitation of the adult with hypermobility syndrome. byKeer RSimmonds J.


Maybe you aren't crazy or or a whiner like others have been claiming. 


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I know you believe you understand what you think I said, but I am not sure you realize what you heard was not what I meant...
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