FIBROMYALGIA: Now With Added Trigeminal Neuralgia

English: 'A pain stabbed my heart as it did ev...

English: ‘A pain stabbed my heart as it did every time I saw a girl I loved who was going the opposite direction in this too-big world.’ (Photo credit: Wikipedia)

Hey Fibro. Can you hear me? I’m a patient, you’re the chronic illness.

Just pile it on, OK?  Not that you are asking my permission or anything, you’re not. One diagnosis after another, I figure there’s more to come, how can I not think that way? I feel betrayed by my rheumatologist who said it wouldn’t get worse. Yeah, right.  I’m an almost 57 years old, (OLD is the operative word,) woman who is utterly falling apart physically. Nope, not even plateauing. Yesterday afternoon I had an appointment with a neurologist for TMJ, I was referred by a doctor I trust. TMJ  causes a great deal of pain, daggers of sharp pain waking me up in the middle of the night, relentless pain. All a chronic pain patient needs, right?

“I don’t have ANYTHING to do with THAT” “I can’t help you at all, said the young doctor.  I don’t  know why she sent me here, he said, that is not  part of my job.” When things are down, and I am tired and feel sick already, I go down and tears started running down my cheeks. Here was my chance to take away one type of pain, I knew it wasn’t going to take away my Fibromyalgia, my chronic pain, my Imbalance, my sleep disturbances or  up my energy levels but at least I hoped that something, anything could take away one of my many types of pain I have. I asked him to call the referring doctor, really, the only doctor I trust in the world.

He was gone a good fifteen message and I took the time to “pity party,” now sobbing into my hands and getting red and swollen with a drippy nasty face. As Oprah has described it, I did “the ugly cry.” I cried  loud and hard and the people at the desk must have thought I was having  a mental breakdown which in a way I probably was. So, after my cry-fest the doctor comes in and says there has been some progress. “Really?, I thought skeptically” I was still crying and he was not acknowledging that in any way whatsoever. Not one, “I’m sorry you are so upset.” Not a :, “I know this must be difficult for you”, NOTHING. He ignored me. I found that appalling. He looked through me. Thanks, Doc. My internist did that too a long time ago. I remember it in detail, she, I’m sure doesn’t, just part of her busy day. DOCTORS:  Be human, SHOW EMPATHY. PLEASE

He then proceeds to tell me that I have another condition ( as if he forgot a teaspoon of sugar in a recipe) : ANOTHER CHRONIC CONDITION NAMED TRIGEMINAL NUERALGIA AND it has to be addressed immediately, which means another medicine, probably damaging my kidneys and liver so it has to be watched carefully. Blood tests, follow-up visits etc,

Guess what? Not only did I try it for two days but it made me MORE dizzy and light-headed. I missed a festival in town that I was longing to go to, I missed out. Again. So, tonight I stopped. I was supposed to double the dosage today and I said “No way.” I was tripping over everything and I looked and acted drunk, without have had anything alcoholic to drink. I COULD NOT WALK, EVEN WITH MY CANE. I’m taking over control. Got it?

Chuck the new medicine and call the non-empathic doctor who will most likely call in another script and call it a day. But this time, I’m ready and I WILL NOT CRY. I WANT ANSWERS AND NO MORE DRUGS IN MY SYSTEM. TELL ME WHAT TO DO WHEN I GET THE ATTACK, NOT PREVENT IT. NO MORE MEDS! I’M DONE.  I AM IN CONTROL, NOT YOU. ANY QUESTIONS? I’LL BE HAPPY TO ANSWER THEM, OH, AND I WILL LISTEN AND RESPOND BECAUSE EMPATHY IS MY STRONG POINT. LEARN SOMETHING.

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12 thoughts on “FIBROMYALGIA: Now With Added Trigeminal Neuralgia

  1. oh no Laurie. Just read this. I hate not having a laptop cuz I’m missing out on reading blogs and every thing else. You sure didn’t need another diagnosis. Im so sorry. My heart, luv & prayers go out to u. I have broke down in doc offices a few times. How can we not? Especially when dealing with docs who have no heart. Just not fair sometimes.
    T

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  2. I have been ordering/demanding/begging/pleading tears with doctors to help me manage my fibro for 7yrs. (I was diagnosed at 30) Finally it is almost manageable. Every added diagnoses/treatment is a jump down the rabbit hole for me. At times I have wanted to change my name to Alice hoping the mean/careless doctors would just order the Off With her Head test. At times I would not mind if my insurance covered it or not. Hang in there! You are not alone!

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  3. I have never heard of this strange thing…..so I looked it up…………OMGNONONONO! How did this find you? Why did this happen? Why was the doctor such a dick? I am so sorry. So.so.sorry. My poor Laurie.

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  4. Oh Laurie, my heart goes out to you. I am familiar with trigeminal nueralgia and it is excruciating. It probably is of little solace but I will add you to my prayers as that is the one thing I can do.
    with love,
    j

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