Musings of a Marfan Mom

Pain(ful) Questions

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I’m sitting here with a questionnaire 12 sheets thick, completely befuddled. I have a Masters degree…a Masters degree in public health, no less. I took a class on survey methods, love evaluation, used it in my culminating project for school. I really shouldn’t be stumped by a simple questionnaire about me, myself, and I.

But I am.

I would venture to say many—probably most—people with Marfan suffer from chronic pain at some point in time. I’ve had fibromyalgia for 8 years or so now but never felt inclined to do anything about it. Until I was pregnant my flair-ups were few and far between, but the first-trimester pain from fibromyalgia was far worse than my first-trimester nausea. Since then my flair-ups are more frequent and I know that as Menininho gets older I need to be as pain-free as possible to have the ability to keep up with him. One of my biggest fears is that my physical limitations will hinder him (or any future children, if we can be so lucky) in a major way.

And so, for weeks I have tried to find a doctor who would take me on as a patient. At first no department wanted me, and then neurology and the pain clinic fought over who could take my referral. Last week I received a call; the pain clinic won out.

Now I sit here, trying not to over-analyze all the questions on the New Patient Pain Management Questionnaire. How can I quantify my pain on a 1-10 scale? What is my constant level of pain? My worst pain? What’s the right answer? If I mark too high of a number I worry the doctor will try to push narcotics on me. Too low, maybe she will laugh me out of the hospital. How do I explain, in numbers, that the burning pain I feel keeps me from being active, but I soldier through what needs to get done for my son anyway, because what if he didn’t ask to be born to me?

What number represents the baseline level of pain you’d like to achieve through treatment? Well, I’d love to be pain-free, but what’s reasonable to expect?

How many times and ways can they ask me if I’m a drug addict? Because really, if I was, wouldn’t it defeat the purpose for me to confess? Do people honestly say yes?

I hope I find my doctor willing to look past these numbers and instead listen to me try to quantify the qualitative.

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3 Comments

  1. I know nothing about chronic pain of any kind, but I do know this…Miles is lucky to be born to you, and I’m sure he asked for it!

    Love the new blog!

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  2. all I can say is WOW, you’re a strong woman. I couldn’t believe that you deal with such pain on a daily basis and are still able to keep up with your kid. I’ve never heard of marfan, but I hope that one day that technology could help alleviate the pain that you’re experiencing. Have you ever tried alternative methods/medicine. Keep blogging about your condition and raise awareness about this because it is something that I would like to help you raise awareness about too. Keep in touch!

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  3. I’d suggest (being on the other end of things) mark what you think is right. Those scales are highly subjective. If they are a good doc, (that’s a big if I know) they should ask you about what you consider your pain to be and what your expectations really are.

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