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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