What’s up Doc?

When I was first diagnosed with fibromyalgia I did what a lot of people probably do.  I went online, looked at various online support groups and websites, and signed up for email newsletters where they update me with any fibromyalgia news.

I have received some really helpful emails, like diet suggestions, new research studies that are being done, or new theories on causes and treatment.  But along with the good emails come the bad.  I’ve been sent an email that stated alcohol was a good way to manage the pain and help sleeplessness.  I have received emails that say that fibromyalgia patients, under NO circumstances can do aerobic exercises.  *sheesh*

Today, however, I received one that really made me think.  It’s basically a step by step guide on how to “effectively” diagnose, and treat yourself for fibromyalgia.  Their argument is, once the doctors diagnose you with fibromyalgia, they basically show you the door, say good luck, and send you on your way.  It implies once the diagnosis is made, your treatment WILL end.

Believe it or not, I can actually relate to some of the ideas behind their message… although NO one should try to diagnose themselves for fibro!  There are many other conditions that have similar symptoms, and they should be ruled out by a doctor.

I think the person who wrote this may have had a similar experience to what I had with my first Rheumatologist.  When my family doctor finished running every test known to man and thought it might be fibro that I was experiencing, his next step was to send me to a rheumatologist for an official diagnosis.  As anyone with Fibromyalgia probably knows, rheumatologists usually come with a lllooonngg waiting list, especially for new patients.  When I heard it might be six months to a year to see a Doctor in town, I searched my options and decided to go to Indy, thinking a bigger city would have the best doctors.  Boy was I wrong!  I should have gone on the list, sucked it up, and waited for the local doctor, but when you’re first diagnosed, you don’t know what to do or how fibro will affect you, so I didn’t think I could wait.  (Looking back on it, my waiting period I eventually had to see my doc was kind of a good thing. It made me deal with a lot of the aspects of fibro on my own and gave me time to see how fibro was really affecting me so I knew what side effects I wanted to doctor to pay attention to).

The first visit was ok (but it should have been a sign to me then that I was the only patient in the office).  Pretty basic evaluation of my tender points, how my health and been, etc.  It was decided that I did, in fact, have fibromyalgia.  I was given the usual pamphlets on what to expect, and it was suggested that I start taking the evil pill (yes, the one with the name I can’t say out loud).  Back in three months…

Time passed, my personality and mood was rocked from the drugs and I had to initiate physical therapy and pilates on my own (the doctor never mentioned it as an option, I only knew it was because of ultimate fitness).  I wanted off the medicine.  I knew it was not good for me for lots of reasons, but I also knew at that point that I was 100% addicted to it.  I went back to see my Doctor and told him my concerns that the drug was making my head too cloudy, and with my activity level, I thought it might be too strong for me.  His answer, to give me another drug that may or may not have the exact same side effects of the one I was one.  He never acknowledged my physical therapy, or asked how that or my Pilates was helping my pain.  He told me (almost word for word) that no matter what activities I did, I would have to rely on drugs and continue to increase my dose level in order to manage my fibro.

That week I went back on the waiting list for the local Doctor.

My Doctor has been great!  I could kick myself a million times over for not going on his waiting list in the first place.  He came highly recommended by my physical therapist, and he is also a fellow Zumba addict (can’t go wrong there).  His office has tried a few new drugs, but in the long run, has been supportive with my decision to treat it with as few drugs as possible (right now I only take a muscle relaxer every night to help me sleep).  This doctor promotes activity and moving as part of fibro management and since he is familiar with my “guardian angel,” he knows how hard I’m pushed in my workouts.  That’s important to me.  I may have fibro, but I don’t want to be treated like I’ll break.

I think the people who sent this message have not looked for the right doctor, and since this message is going out to other people with fibro, it worries me that others may think there aren’t good doctors out there.  Yes, I agree that being proactive in finding your own way to manage the symptoms of fibro is important, but I also think it’s important to have the guidance of a doctor who will come up with a plan that incorporates your ideas. 

Don’t stop looking! The good ones are out there and they’re worth the wait!

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2 Comments (+add yours?)

  1. Pam P
    Mar 21, 2011 @ 14:30:29

    I agree that there are good doctors and poor ones. Fortunately, I have had very good ones and all locally. My own persona physican ran every test too, and referred me to a physiatrist who diagnosed me and sent me for physical therapy.

    I now see the nurse practitioner at that office on a regular basis and she prescribes my meds, and gives me very practical advice how to manage it. I do my own research and bring my thoughts to her and we discuss it decide on how to treat me. She listens and cares and it makes all the difference in the world.

    Reply

  2. Margo
    Mar 29, 2011 @ 23:00:30

    I agree! I went undiagnosed for years because of a family doctor who didn’t even believe it existed and then my next try was a doctor who thought I should go to a dermatologist for my dermographism because Fibromyalgia doesn’t cause any sort of skin issues… when you know more about Fibromyalgia than your doctor, it’s time to move on! My new doctor is great. He listens and we’re figuring out my road.
    If your doctor isn’t helping you – seek a second opinion!

    Reply

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