Chronic Illness, Ehlers Danlos Syndrome

2 More Tests to Go

Autonomic testing is now completed.  This testing was done Monday and was to take 2 1/2 hours.  Mine took four hours.  When it was all over, the technician told me that I taught him something new.


When I arrived, the technician talked to me about the tests.  He reassured me that they weren’t invasive or painful.  Then, he began to attach electrobes to my chest and waist to monitor my heart rate.  This is where things got weird.

He said that the heart rate wasn’t being recorded, because it kept cutting off.  I told him that I have premature beats in my heart rate.  It feels like my heart is skipping beats, but prior testing showed that they were quick PVCs’.  The technician didn’t think this was the problem.  He began trouble-shooting and changed the adhesive pads over 10 times and the cables, too.  After 1 1/2 hours, the technician and the Nurse Practitioner decided that the PVCs were the cause of the long pauses on the EKG.  He had never seen this before.

I had prayed throughout the test for God to please let the EKG work.  As it continued to be a problem, I wondered why God wasn’t making it work.  In the end, I realized it had worked the entire time.


Now, they proceeded with some very annoying tests.  If I hadn’t had to lie flat on my back for so long, I wouldn’t have been in such serious pain.  My lordosis and kyphosis prevent me from laying flat.  When I was younger, I could rest comfortably on my back.  But, this position now causes me to have throbbing pain.

As the tests continued, my back pain got worse and my shoulder instability caused stabbing pain in my shoulder joints.  The last test on my back was the worst.  The test measured sweat and how my nerves were functioning.  When the tens unit started working on my leg and arm, it was the last straw.  The tears started flowing and didn’t stop.  It was all I could do to not scream.

When it was finally over, the tilt table came next.  The tilt-table test was to decide whether or not I have POTS.  This test was much shorter than I expected.  I was strapped onto the table and the technician raised it in one movement.  Then, he asked me many questions about how I felt.  The blood pressure and heart rate were recorded, but I won’t know the results until the 19th.


Tomorrow, I will have a 3 hour Glucose Tolerance Test.  This will be my first proper test for diabetes.  I’ve had my A1C tested and a fasting glucose test, but not a Glucose Tolerance Test.  I’ve had normal results from those tests, but this is the one that is the true standard.

I’m awaiting my test date for the lip biopsy, which will be a definitive test for Sjogren’s Syndrome.  So many tests, so little time!  The only rush is that my insurance will no longer cover this doctor after January 1st.  It’s a ridiculous problem!  I’ll continue to pray that this will work out well.

@2017, copyright Lisa Ehrman

CU - 6.99 PER BOX


  1. I’m so sorry to hear about how tortourous the tests are 🙁 And it sucks you need to do a full on biopsy for sjogren’s! Mine was diagnosed through the dry eye rest. I hope you feel better soon…hang in there! x

    1. xaoti

      Yes, I dread the biopsy. I’ve been “on the fence” (as the doctor’s say) with an auto-immune disease diagnosis. I just hope they figure this out, this is the first doctor who will take my testing far enough. I’m so glad you didn’t have to have the biopsy. Take care 🙂

  2. Caz

    I just wanted to wish you all the very best with the glucose test, and also for all of your results (I know waiting can be an awful process, but it’ll be worth it to hopefully get some answers). Thank you for sharing your journey as a lot of this I admittedly had no clue about before. Caz x

    1. xaoti

      Thanks, Caz! Writing about the journey makes it more bearable. I’m glad to spread awareness, as it can help others get through this type of journey with a little bit more information than I’ve had 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *