Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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n65L4tB 04/07/2015

Hi,
My sister and I had genetic testing a while back and we both have multiple bad genes for EDS---mostly type 3/ connective tissue and joints.

There seems to quite a variety of types of EDS---and a range of severity that is different with each person. My joints and GI tract have always been troublesome but as I've gotten older it is the dysautonomia and adrenal problems that have made mincemeat out of my life.

Does anyone else here have the kind of EDS that puts your adrenal glands into hyperdrive to the point where you're now in adrenal exhaustion---and it won't stop? I've had barely functioning adrenals for over 7 years now.

What can you do---what meds or remedies can turn off that autonomic hyperdive? Enough fight-or-flight, already. I wish I could get back into rest-n-digest.

GenuineMystery 04/09/2015

I wish I personally had a direct answer, but I only know and experience the typical EDS kind of dysautonomia. There is at least one active EDS Facebook group for EDSers with dysautonomia. Also, there's always dinet.org.

smheain 04/09/2015

I don't have a great answer, but I had no idea that my adrenal problems were possibly linked to my EDS. I have bad asthma and I had bronchitis 3 times in a row between Thanksgiving and Christmas 1 year. Each time, I was given successively higher doses of prednisone to combat the infections. The last time, I was given a shot and my adrenal glands went into shock and completely shut down. It took another 3 months to figure out why I couldn't stay awake and why I lost 20+ pounds. I was diagnosed with Addison's disease and put on prednisone therapy. I've been on prednisone for nearly 7 years now. At the time, my endocrinologist said my adrenals should recover within a year. Ha! My adrenals do work now and are producing near normal levels of cortisol, but I still take 2.5 mg of prednisone 3 times a week. I'm still hoping to get off it soon. More than half the Rx's I take are due to side effects of the prednisone. I take blood pressure, cholesterol, triglyceride, and diabetes meds and I'm only 41. I have a bad family history of diabetes and CV disease, but the prednisone brought it all on extra early when I gained 50 pounds. It's interesting that you mention adrenal hyperactivity, because my internist in my late 20s had found this in me and was trying to get me to destress as much as possible. That kind of all went out the window when my pubic symphysis gave out in my 30th week of pregnancy with my second son. I had to have my symphysis fused, spent 3 years in a wheelchair, 3 years using walkers and canes, and another 3 in custom braces for all my major joints. I now walk brace free and I've been off all narcs for the past 3 years. It wasn't till my older son was 10 that my boys and I were all diagnosed with EDS type III. The geneticist said that there was no marker for type III so she could not give a definitive diagnosis, but she was 98% sure given our history. Are there identifiable markers now? We were diagnosed 6 years ago. My advice would be to find an endocrinologist to manage your adrenals. There isn't a whole lot they can do and prednisone sucks to have to be on, but it's something. Other than that, there's always yoga and tai chi if your joints can handle it.

n65L4tB 04/10/2015

thanks genuineMy and smehan for your responses.

It is possible to have a gene test that will show if you have mutated genes for EDS. My sister and I went thru 23andme several years ago---when that company was still testing for the entire genome, biomarkers, mutations and normal genes [as well as family tree and country of origin ethnic genes].
23andme no longer tests for disease biomarkers genes; now they only do gene tests for family tree/ ethnicity/etc.
I wish I had a name of a gene testing company to offer, unfortunately, I can't help with that.

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