Fatigue: Lessons For Your Doctor

Okay, I really couldn’t just leave you all hanging after my last post. But I was too tired to gather the following information last night so that I could include it. But I took a Provigil today, so I’m a little perkier. So here goes.

Let me pick up approximately where I left off. I don’t know why, when I have had no trouble finding clinical information about recognizing, evaluating and treating cancer-related fatigue (CRF), that there are still so many physicians out there who don’t even know it exists, don’t know how to assess their cancer patients for it, or don’t know how to treat it. And this includes oncologists, who really ought to be ashamed of themselves for being ignorant about this all-too-prevalent and life-altering affect of cancer and its treatment. Some of them seem to behave as though they can just kick us to the curb after they’ve “saved our lives.” Hah. If you have one who doesn’t kick you to the curb, thank your lucky stars. For the rest of us, it often falls to our primary care physicians to deal with follow-up care after acute treatment is done, and they, too, need to learn how to help patients with CRF. And there are ample resources out there to help them do just that.

The National Cancer Institute provides a thorough, and recently updated, PDQ on Fatigue, which outlines the steps that physicians need to take to recognise and evaluate it. The National Comprehensive Cancer Network, with research done by the Fatigue Coalition, was able to outline and get evaluation criteria for CRF included in the revised ICD-10, the medical coding book that healthcare clinicians must use in order to be reimbursed for diagnosing and treating medical problems. The good news is that, up until this latest revision, there wasn’t even a way to code for a diagnosis of CRF. Now there is. The bad news is that the evaluation criteria that have been included are already ten years old, may be a bit too rigorous or inaccurate, and might unwittingly exclude patients who have been struggling with and adapting to CRF for several months or years after cancer treatment. I was unable to find a separate and distinct code for CRF, but it appears that clinicians may use the old code for fatigue, which is 780.79, as long as they use the criteria to assess its occurrence in their cancer patients. In the November/December 2006 issue of the Journal of Supportive Oncology, prior to the recent publication of ICD-10, Dr. Joanna M. Brell outlined some of the difficulties inherent in evaluating CRF, along with the reasons why physicians need to continue to treat and research CRF more effectively. The link goes to a PDF of her commentary.

If you find yourself being a treated by a doctor who “doesn’t believe in” CRF or doesn’t offer to help you, you may want to print out some of the above information and bring it with you to your next office visit. Or find another doctor who is more sympathetic. For me, it was my PCP who listened to me when my cancer doctors didn’t, as well as the psychiatrist I found through a research study who works with cancer patients to provide supportive care during and after treatment.

It’s crucial for you and your doctor to bear in mind that you can be doing everything right — eating well, getting a lot of exercise, managing your stress, getting your cancer check-ups, and so forth — and still find yourself falling under the bus. That is the nature of this hellish beast, CRF. I’ve done everything but stand on my head, and sometimes, it just doesn’t help. It’s not your fault. The profound changes that cancer and cancer treatment wreak upon our bodies, our immune systems, and our lives are akin to those that occur in people with PTSD.

While it’s imperative that your doctor assesses all of the factors that be contributing to CRF, things like blood counts, vitamin D levels, nutrition, heart and lung function, etc., CRF can continue to overwhelm a person with perfect lab values, who jogs three times a week, and grows her own organic food. Sometimes, you just need some drugs, like the psychostimulants described on the table that follows.

Wellbutrin, an older antidepressant that helps your brain stockpile norepinephrine and dopamine, is another medication that the cancer support psychiatrist and my PCP had me try for a while. It did help for several months. You need to take a higher than normal dose, and keep an eye on your liver function, but it may help you get out from under. When it stopped working for me, I switched to one of the other medications. Without them, I could not possibly have gotten through 2010. Since the beginning of 2011, I’ve tried to tough it out without them, but I realized last weekend that I was committing that self-defeating nonsense, common to women and cancer patients alike, by settling for feeling merely okay, but far from normal. I was doing that thing that I frequently tell my patients not to do when I talk about depression or pain or diabetes — I was regarding CRF as though it were a character flaw, instead of a health problem. A health problem that was greatly helped by taking those medications. So, why wasn’t I taking them now? I don’t know, really. But as my birthday approached, I looked around at my chronically untidy house, my shipwreck of a desk, my expanding waistline, and my disorganized life, and said to myself, for perhaps the millionth time, “WTF? I deserve better than this.”

And so do you, dear reader.

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This entry was written by Kathi, posted on Tuesday, April 12, 2011 at 07:04 pm, filed under Fatigue, Health & Healthcare, Nitty Gritty, Research, Survivorship and tagged , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

4 Responses to “Fatigue: Lessons For Your Doctor”

  1. Kathi, Great information here. I’m fortunate because my oncologist does recognize the reality of CRF. I think it’s almost cruel when this condition isn’t given credibility. When you think about what the mind and body go through, it’s kind of amazing we do as well as we do post cancer. Again, we must keep advocating for ourselves and for others as well.

  2. It’s just so very, very nice to know I’m not alone. Not a failure for not having my life “back on track.” Thanks for writing this blog. It has been great to find it.

  3. Never a failure, Gina, although it can be awfully hard not to feel like one sometimes. Fatigue is a long war of many separate smaller battles. I have not won every battle so far, but I think I’m winning the war overall. Hang in there. It can crop up for years, no matter what you do, and it can be really trying when your doctor doesn’t believe you or tries to come up with some other reason, usually something you are doing ‘wrong.’ I think sometimes they do that because (a) they just don’t understand it, and (b) they just don’t have any answers. But (c) the drugs help when all else fails.

  4. […] My regularly scheduled life has demanded much of me lately. I also have been contending with fatigue catching up with me. It’s been a bit of a dance — keep on top of life and manage to […]

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