LymeNet Flash: Ehlers danlos

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Ehlers danlos

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Topic: Ehlers danlos

katrinab
LymeNet Contributor
Member # 30330

posted

I have some more questions about this syndrome.........can EDS cause cognitive problems such as poor memory and concentration? How severe can the pain be that it causes? Can it cause pain so bad that it hurts to stand because of the muscle pain for example?

Posts: 723 | From boston,ma | Registered: Jan 2011 | IP: Logged |

sammy
Frequent Contributor (5K+ posts)
Member # 13952

posted

If you really want to know more about EDS, I would highly recommend reading this book:

Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome

Brad T. Tinkle, MD, PHD

Here is a link to is on Amazon:
http://tinyurl.com/bvlcauq

Dr. Tinkle is my EDS doctor, he is very good. I have the book, the office recommended that I get it while I waited for my initial referral appt. It answered most of my questions for me that I had so I didn't have to be unsure and worried. It is still a good resource for me even as I learn.

As far as I know, EDS does not direcly cause cognitive problems. In some people it can lead to depression or anxiety as any chronic illness can.

EDS can cause severe pain. Yes pain so bad that you can't stand. Think about it, if your joints won't support you in just one place (say your hip) It is going to cause excruciating pain. Imagine if your joints decide not to support you in 2 places in your hips and knees. Or 3 places hips, knees, and lower back...

You get the idea. Specialized physical therapy and splinting/ bracing and surgeries that stabilize all work towards treatment.

Your EDS doctor helps coordinate all of this. If you suspect you have EDS, get evaluated.

Posts: 5237 | From here | Registered: Nov 2007 | IP: Logged |

Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

posted

One of the best therapies for EDS is Prolotherapy! It repairs loose or damaged ligaments, tendons, cartilage, even bone---whatever is needed. Go to: web page There is tons of info and referrals there. It's been around since the 1930's or '40's.

Posts: 3771 | From around | Registered: Mar 2008 | IP: Logged |

Annelet
LymeNet Contributor
Member # 13503

posted

You might want to check out the association of EDS with MTHFR (which may be a complicating factor for many people with Lyme etc. )

MTHFR, put VERY simply, causes huge disruptions with Folate and B12 metabolism.... and these certainly can cause the symptoms you describe.

http://www.mthfrheds.com/

I haven't studied this in detail, but you will probably find it interesting.

Anne

Posts: 250 | From canada | Registered: Oct 2007 | IP: Logged |

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