Could Have Told You That

News Flash: Cancer Fatigue Is Real

A few days before my recent birthday, I saw a headline for a new research study which announced, “Breast Cancer Fatigue Is Real.” While I’m always glad to see more research into the causes of this pernicious scourge, my first reaction was to think, ‘Well, no shit. I could have told them that.’ My second was to look up the actual study results in the journal that published it, but since I don’t have a subscription to Psychoneuroendocrinology (I know. A shocking oversight on my part.), I could only read a summary published by the NIH, which helped fund the research, and not the entire article. And my third thought was to continue to be amazed and appalled that there are still so many cancer survivors out there who don’t know that post-treatment fatigue is, in fact, real, and who are not getting any or enough help for it.

Not only have I been on this bus since my seventh radiation treatment, I’ve been thrown under it, and have spent far more time than I care to tally trying to crawl away from it and leave it behind. Two days ago, I celebrated my third birthday since my cancer diagnosis. The good news is that I have actually begun to experience a few odd moments of feeling like my old self again. The bad news is that it still doesn’t take much to throw me right back under the bus.

Do Not Disturb — Nap In Progress

I’ve been absent here since my last post on March 29th largely because of slipping under the bus again. Spring may at last be in the air here, but it’s been a long winter. Like many other folks, I survived a month of fighting off some very stubborn respiratory infections. That was February. Shortly thereafter, I spent a day subjecting my already-tired back to the strain of sitting in really lousy chairs during a series of visits to my patients, the result of which was that I couldn’t stand up straight at the end of the day. Because I’m a physical therapist, I managed to follow my own advice and recover. That was March. Which brings us to April, and being slammed at work — and believe me, I’m always grateful that I can work at all and have a job to work at — along with attempting to have a little fun, get a little more exercise, tidy up the house, and enjoy myself. You know, like a normal person. Silly me. For my sins, I’ve paid for all this by once again experiencing that familiar drag-ass quicksand, intent on sucking me down once more.

I’m not going to talk about diet, supplements, exercise, stress reduction, and all the other bromides that those who don’t really know what this is like always trot out when the fatigue discussion comes up. I do all that, okay? The thing about cancer-related fatigue that distinguishes it from regular tiredness is that all that stuff doesn’t work sometimes. And that you have to get out of the muck even to engage in some of these helpful behaviors. Give me the drugs, is what finally occurred to me. So finally, the day before my birthday, I searched through my collection of prescription bottles and tried one of them, namely my generic Adderall, which is a drug containing amphetamine salts. Didn’t really work. I wasn’t as hungry as I usually am, but I still had to take a nap. The next day, my birthday, I popped the other drug, Provigil, went off to work, and felt marvelous! Like, normal!! Happy Birthday to me!

Okay. So, it’s real. So what?

Back to Fagudes et al and their research. What this latest study evaluated was the “relationships between fatigue and both sympathetic and parasympathetic nervous system activity in breast cancer survivors. Norepinephrine and heart rate variability (HRV) were evaluated at rest, as well as during and after a standardized laboratory […] stressor.” What they found was that breast cancer survivors who suffered from fatigue responded to stress by producing higher than normal levels of norepinephrine, the neurotransmitter that we use for the “fight or flight” response, and lower than normal heart rate variability, or HRV, which is a measurement of our heart beat that indicates our recovery from stress. All of this is related to the responses of the sympathetic and parasympathetic nervous systems, which have been shown to be thrown out of balance in people with Post-Traumatic Stress Disorder, as well as cancer patients who suffer from long-term fatigue after treatment. Norepinephrine is a component of the sympathetic nervous system, which allows us to gear up to deal with stress or trauma. HRV indicates how well our parasympathic nervous system is responding, which is the system that is responsible for allowing us to rest up after dealing with stress or trauma. In people who are not suffering from PTSD or cancer-related fatigue, these two systems remain in balance overall. What the study showed is that, in women with breast cancer fatigue, the sympathetic nervous system remains in a state of over-reactivity, while the parasympethic nervous system wears out and is unable to help conserve and restore our energy. In other words, our bodies go into fight mode, and can’t seem to come out of it.

Many cancer-related fatigue studies in recent years have focussed on breast cancer patients. There may be many reasons for this, but surely one of them is that, unfortunately, there are a lot of us around. But I also think that perhaps we get hit with it so often because breast cancer is one of the more notoriously recurrent forms of cancer. No matter how many negative scans and test results we may get after our initial treatment is over, we are always looking over our shoulder. It’s no wonder that our immune systems become convinced that they have to stay in fight mode, ever prepared for that next test that may tell us that the Beast has returned or metastisized.

Oy. The study didn’t say how we’re supposed to deal with this, except to include a caveat about keeping a vigilant eye on our overall health. Yeah, thanks for that. Tell me something I didn’t know. In the meantime, I’m tired of the fight, and I’m tired of being tired. I’m taking the drugs. Again.

You may find these posts helpful in providing more information about cancer-related fatigue:
Fatigue: Lessons For Your Doctor
Losing It…And Trying To Get It Back
Fatigue Redux: Not Really Rosie…Yet
There May Be Whining…
The ‘F’ Word

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This entry was written by Kathi, posted on Tuesday, April 12, 2011 at 05:04 am, filed under Fatigue, Health & Healthcare, Nitty Gritty, Research, Survivorship and tagged , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

6 Responses to “Could Have Told You That”

  1. yes! i’m tired being tired without being understood, neither doctors nor kinfolk… now i’m totally changing my life regarding to this new data. Thx for this post Kathi!

  2. The whole process has left me not being able to sleep. Whilst unlike yourself I never had Chemo or rads not even a pill. Just removal of my breast plus recon leaves me in a loop of doubt. Whilst the offending area was removed your mind is still working overtime. When I visited my GP only the other day he voiced I should go on valum without me even requesting. I was there for a totally different reason. I told him i’m tired not depressed, but GP’s are so quick to slip you a pill rather than explain or research the symptom.. At least by having our little communities via facebook or blogs we can try to understand even damned answers to questions and feed them threw the loop to others..
    Thank you for your post Kathi informative as always like many others..

  3. You are so right about the fatigue factor. It is real, and like you, I don’t need a study to tell me that. Of course, during treatment, there’s also enormous fatigue. In fact, upon the urging of my oncology nurse, I went to a seminar on fatigue — and fell asleep because I was so fatigued!!

  4. I found your blog through a friends facebook update. Thank you so much for this informative post and education. I will definately be sharing your link and information with my breast cancer support group. I am a bit short on time tonight, but look forward to the weekend where I can get to know you better. Off to bed so hopefully I can avoid getting hit by the bus this week.

  5. Welcome, Kim. The next post presents some info about how to encourage your doctor to assess & treat cancer related fatigue which you might find helpful. Fatigue: Lessons For Your Doctor

  6. Just had an ah-ha moment. The fight or flight response being on permanently – of course! *slaps forehead* I’m still in treatment for anal cancer and as well as chemo making me feel lousy and radiotherapy making me sore I’m CONSTANTLY second guessing, thinking ahead blah blah and it’s physically exhausting. Thanks for giving me the reason why.
    Loving your blog

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