Invisible pain

We met with Lizze’s doctor this morning to discuss the current state of her medications.  More importantly, we were looking for the results of her MRI.

As weird as this may sound to some people,  Lizze’s worst fear was the MRI showing nothing.

In her mind,  if something was wrong, at least that would explain the extreme levels of pain. Upon hearing the results,  her worst fear was realized.  Nothing was physically wrong.

Lizze sat there in tears. 

I don’t know where we go from here.  🙁
Please continue to keep her in your thoughts. 

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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MeaghanGood

God, I remember this. When I was suffering from those terrible headaches and got back my totally normal MRI, I burst into tears and had to hide in a fourth-floor restroom at my college and cry for a long time. I had been so hoping it would show something.

Monica Kaye

Rob and Lizzie,  Was the MRI just supine?  Rob, did you mention Lizzie has a connective tissue disorder?  I suffered for 10 years from debilitating "fibromyalgia" including such bad headaches I thought I was dying.  My supine MRIs all looked fine.  I insisted on an upright flexion extension MRI (There is a place in Lorain that does them) and took it to a neurosurgeon who looks at the entire picture from brain to lumbar.  He ordered the rotational 3DCT.  Oh my.  The instability on moving–which is what real life is like–not lying down flat on a table–showed my brain stem being completely kinked when rutning to the right and the left (causing dizziness and blacking out) and so many other things.  I know you have many followers so you may not remember me but Danica was a 2010 Rocktoberfest recipient.  We are down the road from you.  I pray for some relief and for you to know what to do next.  If Lizzie would ever like to meet or have me email her the tests that finally proved my debilitating pain was not in my head I would love to help.  I know so many people suggest so many things but as I read your families story daily I just have this gut she hasn't been properly diagnosed yet.  Many prayers.  Much strength.  Monica

rmagliozzi

Poor Lizzie. She doesn't deserve to be in so much pain..
You may have already had this done, but have you checked Lizzie for Hashimoto's thyroiditis or Graves disease? They are both autoimmune thyroid disease that can cause many of her symptoms, and often people are misdiagnosed with fibromyalgia for years before they realize it is what they really have. You will need to run tests for thyroid antibodies. Other tests you could run are the TSH (total thyroid hormone), T3 and T4 hormones. I have had thyroid autoimmune diseases all my life, and there were times I had a very flat effect and also felt like a truck had run over my body.  Migraines are very common as well. Also, what about tests for viruses like Epstein Barr, Cytalomegavirus and HH6 (Roseola) virus, Lyme disease? I have also read of these occuring in Fibromyalgia.  There has to be some sort of cause for all her pain- you just haven't found it yet. 
I really hope you find answers soon.

Carlyoung

Rob and Lizzie, Last year I was so weak and in a lot of pain.  Spent a 5 day period in the hospital  The doctor decided that it was all in my head and called for a psychiatric consult.  The psychiatrist came and spoke with me for a half hour.  He was the psychiatrist that our kids used to see.  He said that it wasn't all in my head.  I feel for you Lizzie, You and your family deserve a pain free period.  I am going back for another round of MRI's on my c-spine and t-spine in one month.  I doubt that I will get answers, but we have to try.

lostandtired

@Carlyoung thanks Carl. 🙂

Carlyoung

the psychiatrist thanked me for giving him a break.  turns out my doctor, a hospitalist, was calling for a lot of psych consults because he wasn't doing his job.

CJ

Rob I cant tell you at the times I've went to the Dr because something hurt only to be told "everything is normal".  Its very frustrating.   I don't remember what it feels like to not have a headache.  So I really feel for you.  
 
I don't know if Lizzy exercises or not, but for me exercise helps the most with my fibro.  I found out quickly the more I moved the less it hurt.  So I go to aqua aerobics twice a week and I can really tell a difference.   I'll be praying for you and your family.

lostandtired

thank you so much 🙂

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