Tag Archives: fibromyalgia

Being an Empowered Patient

I’ve been thinking a lot about doctors these past few weeks.  I’ve had problems with a couple of them recently, particularly my pain doctor.  Her nurse doesn’t return calls for days, is sarcastic, and the doctor herself is unavailable and assumes I’m a drug addict (or at least that is the impression that I get).  I could suck it up, I could fire her and try to find a new doctor, or I could address the issues head on.  I think too often patients do the first, when they should try option #3.

So, these are my tips for being an empowered patient, which I think are applicable to everyone and not just us “professional patients.”

1)    Know the purpose of your visit ahead of time. This might seem really basic, but the more direct you can be, the better.  Don’t just say you’re sick, or you’re in pain: let the scheduler know what hurts and for how long.  Having this information will tell the scheduler know how urgent your case is and help you get in more quickly.

2)    Type out your relevant history and bring it with you. I have done this for two of Mark’s appointments – when he had pneumonia and when he was diagnosed with Type 1 diabetes – and both times received very positive comments from the doctors.  Each time the paper I prepared was no longer than a half a page.  I listed his medications, surgeries, and a timeline for his symptoms.  I brought a copy for the nurse and a copy for the doctor.  This ensured we wouldn’t forget anything important and they had a hardcopy of everything that we’d discussed so they wouldn’t forget, either.

3)    Write out any questions ahead of time. It’s (usually) not that they’re jerks: insurance companies mandate how much time a doctor can spend with a patient.  Depending on the practice and insurance company, that ranges from 2-5 minutes.  You have a responsibility to be as concise as possible to get the most out of your appointment.

4)    Know your illness inside and out. This is mostly applicable to those with chronic illnesses.  Doctors cover a ton of information in medical school and it’s not fair to expect them to be an expert in whatever you have just because you walk in their office.  [It is TOTALLY reasonable to expect they will work to educate themselves.]  If you’re up on the latest treatments you’ll be better able to advocate for yourself.  Along those lines, get connected with those who ARE experts (such as checking for a national foundation).

5)    Stand up for yourself. If you don’t understand something the doctor said, ask for clarification.  If you’re not happy with how you’re being treated, say so (respectfully).  Just be sure that you are clear with what the problem is and what you want to see changed.  Once in college I was really frustrated with a new cardiologist.  After a totally preventable night in the ER, I met with him and, without raising my voice, said something to the effect of “I think you’ve forgotten that I am someone’s daughter, sister, friend, and girlfriend.  I know my illness better than most doctors, and I insist that I be spoken to like an adult.  You have not kept me in the loop and that resulted in me going to the ER.  This is not acceptable.” This resulted in him yelling, “I am the doctor and you are the patient and you will do what I say!” Hey, I was able to quickly figure out that we weren’t compatible.  No more wasted time.  On the flip side, I’ve twice had problems with nurses not allowing me to talk to the doctor/not delivering messages.  Once I alerted the doctors to this (I looked up their email addresses on the university websites), they spoke with their nurses and provided me with alternate ways to reach them.  Problems solved.

6)    Finally, when all else fails, fire your doctor and move on. You are paying her and having a poor relationship with your doctor can negatively impact your health, both in terms of the stress it causes you and the wrong treatments you’re receiving/beneficial treatments you’re missing out on.

You can bet I’ll be utilizing some of these when I meet with my pain doctor again this week.  I hope I don’t need to use the last one.

Do you have other tips to share, or stories of how you’ve used some of these suggestions yourself?

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MRI

Headed in for an MRI of my spine this afternoon. The pain specialist I saw a few weeks ago ordered it to see if the fibromyalgia is really just nerve damage due to spine changes from Marfan. Don’t get me started on the grief it took to get this scheduled, but for once it wasn’t the insurance company’s fault! Go figure!

Anyway, I just got off the phone with the scheduler and she said it will be sometime in JANUARY before I can get my next appointment, to even DISCUSS medication or physical therapy/acupuncture (which I’d prefer). My initial appointment was 4 weeks ago.

So…the pain clinic only lets you see them for 6 months, but the first HALF of that is spent waiting, which means I get maybe two visits after starting treatment to see the specialist. Seriously?!

I think I’m going to go cry in a hot shower now, then try to think up a Plan B.

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Pain(ful) Questions

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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