The Frustration of Normal Test Results with Fibromyalgia


hydrangeaDoctors have been telling me this for the last 10 years.  Long pause, inhalation of breath.

Great.

Ok.  Let’s take a step back. Don’t get me wrong, this is great.  I certainly don’t want to be sitting across from a doctor telling me I have cancer.  But it’s so incredibly frustrating.  If you’ve ever met someone who wants  their test results to come back abnormal, they’re probably a hypochondriac – or a Fibro Warrior.

Why can’t it be that simple?  “Ah, of course.  I see why you feel like crap.  Your B12 levels are very low.  Let me write you a prescription for heavy duty vitamins, some sunshine and a smile.  You’ll feel better in no time.”

Yea right.

I went to my new doctor yesterday.  My slightly crazy but really awesome new doctor.  At my first appointment, he spent 2 hours with me discussing all my symptoms and complaints.  For the first time in my life, someone was taking me seriously.  Which is pretty heavy.  I’ve spent years with doctors looking at me like I’m crazy, trying to prescribe me antidepressants and shoving me out the door.  I had a  doctor say to me when reviewing my test results: “Oh young people.  You’re always disgustingly healthy.  You’re the best patients.  We don’t really have to think when you come in.  You give our old brains a break.”  But wait!  I feel terrible.  There has to be something wrong!!!  Run more tests!

I’ve read that Fibro Warriors have some abnormality in their test results but  the results come from tests that aren’t standard and who knows if they’re even covered by insurance.  AND I don’t think they are necessarily something that is definitively found in all Warriors. If it was, I’m sure they’d be using it for their diagnosis.

The problem is, that without that blood test confirmation, you wonder.  Maybe it’s not Fibromyalgia? Maybe it’s Margo disease?  Maybe is bubonic plague?  Ok, fine, it’s not the plague.  No one’s going to be singing ring around the rosey around my dead body.  But I’ve imagined it…  Seriously.

So my new doctor and I reviewed my disgustingly normal test results and he asked me what symptoms I found the most bothersome.  I sat there for a minute.  Wait?  Did the doctor just ask me what I wanted to do?!  He’s not telling me where to go first?  I get to decide.  Wow.

So, I’m going to a physical therapist, a rheumatologist and an endocrinologist.

I was wary of the physical therapist as I’ve been to a few in the past and they would throw me in a dark room with heat packs until the money ran out.  However, my doctor told me that Penn physical therapists are different.  They are salaried.  Apparently most teaching hospitals are structured differently than your typical hospital or physical therapist office and your therapist gets paid the same amount of money if you come 1 time or 100 times. He has a completely different agenda then my last physical therapist because he’s not in it for the money.  It appears they are actually here to help.  What a novel concept.

I am hopeful about physical therapy.   I’ve essentially given up my life because of my muscle pain.  I pull out my back opening a window and then spend the next 2 to 3 days sitting on a chair with a heating pad.  I’ve stopped all of the exercising I once thrived on – spinning, running, stair climbing, even walking on the treadmill is difficult.  All my home improvement projects have been shelved.  My new garden has become truncated.  It’s extraordinarily frustrating.

So we’ll see.  I don’t start for two weeks and my endo and rheum docs aren’t until may – sigh.  Finding answers is a slow road and when you feel terrible, you want the answer yesterday.  This journey is a practice of patience.

Deep breath, happy thoughts, advil.

Yours in Health,

m

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2 Responses to The Frustration of Normal Test Results with Fibromyalgia

  1. DisabledMe says:

    Hi. I just wanted to introduce myself. I also have fibromyalgia and I spent about a year and a half stuck in my apt because my fibro was so severe that I couldn’t drive a car or walk or anything like that. I always hated when my test results would come back negative – it’s so frustrating because you want something to come up so you can figure out what’s going on and what you can do. Basically, what I’ve found to work best is to find medicines that help you at least control the pain so that you can still do some of the stuff you want to and the most important thing I’ve found that helps is to find different things that make you happy (like, self-care stuff). I have started gardening and I do it when I’m not feeling well enough to leave my home. I have also started taking bubble baths (I light candles and put bath bombs in it and just relax. The bath helps my muscles and my body relax and it takes my mind off the fibro for a little bit. Hope this helps! Keep writing – it’s a great way to get through these frustrating times.
    Gentle Hugs :p

  2. Margo says:

    Thanks for writing! I’m glad you’re doing better than before :-). I am also a huge fan of taking baths! Gardening and writing help too. My biggest struggle is accepting my limitations and coming to terms with them. It’s a slow process.
    Gentle hugs to you too!
    M

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