Frustrated

I am so frustrated right now. I don't even know where to begin. My body started hurting me when I was in college. Not all the time, but a few days each month. i went to the doctor who tested me and didn't find anything and told me it was "Anxiety". He put me on anti-anxiety medication that made me drugged and did nothing for the body pain. This doctor also made me feel like this was all in my head. I felt embarrassed for seeking treatment and ignored the pain for the next ten years.
Then a couple of months ago my body started hurting in the usual way, but it didn't go away. It got more and more intense and more and more painful and was constant. It had never lasted more than 24 hours before. So, unable to do my daily life, I went to see treatment. I was tested again and the results were normal. I was given a referral to a specialist and some medication. The medication actually worked and the pain receded. I can still feel it, but it's not too intense to deal with.
I waited six weeks for my specialist's appointment. I went in, and they tested (much more blood work)me again. I took a "steroid challenge" to see if it would help. They said that if it made me feel awesome then we would know something. They also said to call in a week to get the results and then the doctor let me know that I should ask specifically to speak to him either way.
I took the steroid challenge. I felt nothing different. I called today to get my lab results. The nurse left me a message saying that my lab results were completely normal and she would leave a message with the doctor to call me "even though" my lab results were completely normal. She basically didn't think he would want to talk to me since it was now "proven" that nothing was wrong.
And so I now feel that everyone thinks it's in my head. Michael says that he thinks that I've convinced myself that I have Fibromyalgia since that's what the doctor suggested and that if I didn't have a name for it I would feel better. My mom suggests that the exhaustion I feel is normal and without the pain there wouldn't be a reason for me to be seeking help.
They both love me and want me to feel better. And they do believe me. But I feel somehow like I don't have any validation that the way I feel IS real. And with the medicine from the first doctor actually working, and the pain subdued, I'm beginning to doubt myself.
Do I go off the medicine and see if the body pain comes back? Do I keep seeking a doctor who might actually know something that can help me? Do I keep pushing, or would it be better for me to drop it and pretend nothing is wrong? There IS a lot to be said for believing in something in order to make it true.
I just don't know and I feel so frustrated.

Comments

Anonymous said…
Hiya Amber - Sorry for peaking at your blog, I saw it in your sig. line from Austinmamas after your horrid day and felt for ya. In regards to your body pain, have you ever been tested for Celiac Disease? It hits 1/133 people but goes 97% undiagnosed and mimics other illnesses later in life until the guts are healed from eliminating gluten. Just wondered if you'd fiddled w/your diet at all to experiment w/eliminating the pain. Hang in there mama!

http://www.csaceliacs.org/celiac_symptoms.php

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