Oh new doctors, why do you stress us out so much?



So, Shawn and I recently moved back to the area we are from, and are no longer living in anything resembling a city. Goodbye, bright lights and big city doctors, meaning specialists, meaning specialists that know and understand Fibromyalgia with no questioning if we are faking it.  I am not particularly looking forward to it, and yet I know it’s a necessary evil.  We all know how that first appointment with a doctor usually plays out; we’re hit with a barrage of questions, not always nice ones either.  I know the questions that SHOULD be asked, yet rarely are.
  • What are two to four of your most troublesome symptoms, and how do they affect you and your daily routine?
    • The fatigue and constant tiredness, the pain in my legs and the damn fibro fog.  I hate forgetting things!
  • What other symptoms do you experience often?
    • Headaches, dizziness, blurry vision
  • Where do you expect to have pain on different days -- which areas of your body?
    • Mostly in my legs, sometimes back, arms, feet, and wrists.  It can and does hit me everywhere at some point in the week.
  • When did your symptoms first start? Did they start within a short time of having a traumatic injury?
    • My legs have always had pain in them, I was told it was growing pains when I was young.  I realized later in life, no it was fibro.  It got worse after a car accident, and even worse after knee surgery/
  • Does anyone else in your family have fibromyalgia or symptoms similar to yours -- mom, dad, sisters/brothers, or children?
    • Sister is diagnosed as well, she was 4 years before me and she’s 6 years older.
  • How many hours do you typically sleep at night? Do you feel rested after sleeping?
    • Depends, I actually sleep more soundly than most fibro people I know. I’m blessed in that arena for sure.  There are some nights that I have SERIOUS insomnia though and feel like I got zero sleep.
  • Has another doctor diagnosed you with fibromyalgia? Do you know what tests were ordered?
    • Yes and no.
  • What has been done in the past to treat your fibromyalgia? Do your symptoms interfere with work or school, or cause you to miss out on family activities?
    • Too much to list, and duh?
  • Do you have other medical conditions or health symptoms?
    • Hmmmm…..PCOS, Hypothyroidism, and “female issues”
  • What medications (over-the-counter, prescription, and natural remedies/supplements/vitamins) do you use? What do you take when you have a fibro flare?
    • I only use my tens unit, tramadol and Excedrin these days.

However, very few doctors ask these questions. Very few care enough to ask these questions, the questions that will answer so many things for them.  Simple questions, and yet they don’t ask them, instead they judge.  Then once you have them convinced that you aren’t just loony toons they try to drug you up.  Let’s not treat the person as a whole, let’s just drug them.  Let’s treat each symptom separately, let’s give them more and more pills.  Oh, you have a side effect from one of the pills?  Let’s give you another to counteract that! If you get a side effect from that one, we’ll just give you another.  I know firsthand that this is what happens because I unfortunately allowed it to happen to myself when I was newly diagnosed. I know how hard the cycle can be to break, and I know that once you are on all of these drugs, coming off of them is almost too much to handle.  You can have horrible withdraws (NEVER allow yourself to be put on Cymbalta!) that have been likened to coming off of heroin even. It’s no fun, and then you get to take a good hard long look at yourself, the fact that for almost two years you didn’t do a damn thing to help yourself and your disease.  That you sat in a chair or on the couch or simply in the house like a zombie.  That all of this so called medicine turned you into someone that you don’t even recognize when you look in the mirror. 
So I guess what I’m saying is this, I’m scared. Not of being seen, or having a new doctor even.  I’m scared of having to prove that I know what’s best for myself.  That I know what’s wrong with me yes, but that I know how to best control it.  Scared of having yet another doctor trying to medicate me out of my mind instead of listening to me.  Instead of hearing me.  Instead of trusting that after all these years of suffering with this ridiculous untreatable illness, I know how to best manage my own body and pain.  I know what works for me.  I know that I get more relief from yoga, a tens unit, proper diet, exercise and yes the occasional pain pill when it gets unbearable.  Trying to convince yet another doctor that no I don’t want strong drugs, I don’t want things that make me feel like I don’t have control over my own body. I want the control.  This is how I keep the control.  I almost feel like I’m going into battle tomorrow.  A battle to keep control over my illness and my body.  I won’t lose. I will win.  I know this, because I know what happens when I give in, I become a zombie, I gain all the weight back from those horrible pills that I become dependent upon them just as I’ve seen SO many other people do.  So while, yes, I am scared of what can happen, I’m confident in myself and my abilities, and I’m confident that while they may be the doctor, they may have the medical degree, I still know what’s best for me. That’s the thing, we have to advocate for ourselves, for our care, for our illness.  Even though it seems so widespread to me, there’s SO freaking little that seems to really be known about it.  Why is that?  Is it not glamorous enough for doctors?  I often wonder why doctors don’t do more research on fibro, why don’t they? Why? 

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