Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Sunday, June 6, 2010

The Pain is Back...

I had a few days with relatively low pain.  It was the lowest pain I've had in years.  Now things are starting to act up again.  I feel that deep bone ache, joint pain, joint instability, and muscle and nerve pain.  I can literally feel my  muscles tightening up while I write.  Yesterday I was able to sit with my shoulders back and I could sit almost straight.  Now my back muscles, shoulder muscles, and neck muscles are drawing in.  I am already hurting bad and it's only almost 9:35 am.  I have pillows on the back and seat of my chair.

What is funny, stupid, and I don't know what is that a big part of me wished so hard the pain would be gone forever that I wanted to convince myself that I didn't have EDS anymore.  I know it sounds stupid, because I can't change my genes.  I just wanted to believe so bad I wouldn't hurt like that again.

My fingers hurt too bad to ever handwrite and for two days I was able to handwrite a letter without excruciating pain.  It was awesome.  I tried this morning to write and it hurt so bad.  Right now it is very painful to type.

I'm still waiting on the Columbia, MO University hospital's rheumy department to call back.  If anyone is thinking of going to the University Hospital in Columbia, MO for EDS, I highly warn against it.  Their office says "EDS is no big deal, it's just hypermobility." "We call EDS just hypermobility around here." "People with EDS don't wear braces. Why would they? They don't help."  I will be glad to provide the doctors' names if you would like, but you'll have to message me.

I'm still supposed to see Dr. W in St. Louis, MO in August 20th.  I am supposed to see a cardiologist at University Hospital in Columbia on...flipping through date book...oh shit!  I missed the appointment!  Apparently my appointment was June 4th at 2:00 pm.  Well it looks like I'll have to reschedule that.  I've been passing out lately and would like to be evaluated for POTS and Mitral Valve Prolapse just because of the EDS diagnosis.

This week I've also been dealing with a cold.  Ick.  Speaking of ick, I had a really bad and really scary reaction to a bag of clothes that molded.  I could feel my throat swelling, I was coughing hard, and I was having a hard time breathing but fortunately that was the worst of it.  So now I know that I am allergic to tree pollen, grass pollen, mold & mildew, and dust.

Well I guess I'll go now.  Thanks for reading ya'll.


  1. I'm sorry things are so hard right now.
    That attitude that EDS is no big deal is so prevalent yet so wrong. I wish I knew how to fix it among doctors.
    Have you tried a Pen Again. I just got mine at the local Staples and it is helping. Sama also has a good video on YouTube about writing....

  2. Thanks Lisa. I saw Sama's video awhile back but haven't tried it yet.

  3. Hi, I followed you over here from twitter (I'm betta_knitter). I go to see several University Hospital docs as well- my rheumatologist, dermatologist, and endocrinologist are all there. I did not like the way I was treated at the main rheumatology clinic there- they completely ignored what was wrong and told me to take aleve. I got referred after a complaint to another rheumatologist there who works in the pediatrics department. I was just wondering how they treated you since you are also young- I felt like they dismissed me because of my age.


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