“I Never Knew 24/7 Pain Wasn’t Normal”: Ehlers-Danlos Patient Gets Diagnosis Late in Life


When I was a child, there was no internet. There were no smart phones. Very few people had computers in their homes, and even then, they usually had only one. What I’m saying is that this technology revolution happened just as I was entering adulthood. I’m 31 now, and we’ve seen rapid gains in technology since I was 21. Technology, though, was what got me my diagnosis. It was a friend online from California (I’m in Texas) who said my symptoms lined up with Ehlers-Danlos syndrome (EDS). She was right.

When I was a child, I hurt constantly. I lived on a ranch in the woods, and my mother just assumed I was weak. I began to think all the pain was normal, and maybe I just wasn’t tough. I’ve always had horrible gastrointestinal issues, as well, and I was always tired and weak. That would be the POTS.

I wasn’t diagnosed with EDS until I was 29 years old. I had a child when I was 20, and that pregnancy was what really amped up the POTS symptoms. But again, I thought it was normal (It wasn’t until I actively dislocated a joint purposely in front of one doctor that I even got a diagnosis for EDS. I’m not officially diagnosed with POTS, but I know I have it. Officially I’m diagnosed with dysautonomia). My gastroparesis and EDS were found after I delivered twins at 27. When I was pregnant with them, my hips would slide around funny, halfway out of their sockets. A couple of times, toward the end, they dislocated. At that point, I still didn’t know I had EDS. Once I figured out I did, I took tons of research to my doctors and they all “poopoo’d” it because I don’t have stretchy skin on my forearms. They were ignorant of the condition.

Since receiving a diagnosis, the ball has begun rolling and I’m beginning to get care. I’ve had five surgeries this year…all related to EDS. I have IV access at home. I have all the pain medication I need. None of that stuff was going on before I was diagnosed. People just threw Vicodin at me and told me it would take care of the pain. It didn’t.

I’m still having trouble with doctors thinking EDS is no big deal. Yes, it is important. It’s the cause of most of our (other EDSers and me) problems medically. I’m pretty happy now to have decent care most of the time.

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Global Genes Comments

  1. I just got diagnosed & I am half relieved half more depressed. Question does anyone take the collagen supplement? Or anyone recommend anything they take for pain (besides narcotics). I’d appreciate anyone’s advice.

  2. Kris hansen says:

    I have many symptoms of EDS too.
    Having trouble getting anyone to lesson to me. Rhematolgist thinks Brighton score is only diagnosing tool.
    Never looking at other physical signs and 100+ symptoms I have.
    I need to find a EDS knowledgeable dr in San antonio , Please help anyone.

    • Alicia Jaramillo says:

      Kris, I realize you posted many months ago so hopefully you’ve gotten some help by now. I live in San Antonio as well. My rheumatologist is Dr. Everett Allen. I demonstrated to him my mobility and gave him copies of cardiac testing I’ve recently had done that shows mitral valve prolapse, and that I have POTS which goes hand in hand with EDS. He documented everything and gave me a referral to see Dr. Scott McLean a geneticist here in San Antonio who will give an official diagnosis. The wait time to see him is 8 months to 1 year. Hope this helps!

  3. Michael Tenerias says:

    I have EDS I have always thought I was alone with this disorder . I am 41yrs old the pain is everyday I ahve worked in a warehouse for 21yrs.I am feeling it since its -20 below..feel free to contact me I need to see a doctor for this I also live in san Antonio Twxas

  4. Hi Meredith,
    I just came across globalgenes.org and rareproject.org and subsequently your posts on EDS. Thank you for sharing. I really appreciated it and definitely enjoyed it because EDS runs in my family. I do understand how uneducated the medical community is and how indifferent they are for the most part. I can even add to that and say they are contemptuous at times which brings me to the reason I am writing to you. You said that “I am pretty happy now to have decent care most of the time.” We are in the Northeast and we haven’t found any decent care. As a matter of fact, most doctors try to avoid us or they say something completely insulting or lie about the actual results on an MRI, etc. I think the reason is that they don’t want us to come back for fear of medically mishandling patients with rare disorders and feel they could eventually be sued. This is the only conclusion I can come to. This is so frustrating and depressing. One family member has so many dislocations, subluxations, and chronic pain that they are disabled and only in 25 yo. So, can you please let me know how you came to “have decent care most of the time”? Is it because you are in San Antonio, Tx. and you have more knowledgeable physicians or is it that there something about Texas or is it that there are more EDSers there and therefore more familiarity? I am at my wit’s end; I hope you can give me a clue.
    BTW, have you ever been to Inspire.com/groups/ehlers-danlos-national-foundation/ ? Looking forward to hearing from you and wishing you the best. God bless and thank you again.

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