You’re Getting Very Sleepy

August 1, 2006 at 2:57 pm (Uncategorized)

Tired-9135251.jpg    Today is one of those days I have come to call my sarcoidosis days. I am inexplicably and thoroughly fatigued. I got plenty of sleep, ate a nutritious breakfast, and yet I feel so tired that I could die.

The first time I experienced fatigue like this was soon after my son Andrew was born. I would show up to post-baby obstetric appointments, and report that I was exceedingly tired. I told friends and family that I was exhausted. Everyone – every single person – basically said, “Well, duh, you just had a baby. You’re supposed to be tired.” I would take in this information, wait a couple of days, and remark again that, really, I felt extraordinarily bad. Truthfully, I was used to sleep deprivation. I was a free-lance writer and a first-rate procrastinator, which meant I had an almost legendary reputation for gutting out projects in the wee hours of the morning before a deadline. I once wrote the better part of a book in a three day period, during which time I slept for a total of three hours. However, the post-Andrew tiredness made those escapades feel like a nap-filled vacation.

Three months later, I was diagnosed with sarcoidosis and learned that chronic fatigue was one of the most commonly cited symptoms of the disease. I felt like flipping off the world for telling me to suck it up because I had just had a baby. It was similar to learning that Andrew’s supposed “colic” was instead severe allergies to wheat, milk, and soy (all of which he can fortunately now consume.) The poor kid was projectile vomiting, covered in a rash, and pooping out long strings of mucus, and everyone kept telling Jay and me it was normal. Finally, we had the good sense to take him to the pediatrician, who then referred us to a pediatric gastroenterologist, and learned that technicolor distance puking is indeed not normal behavior for an infant.

Read any article or web site about sarcoidosis, and you’ll see fatigue listed as a common complaint. Last year, I attended a conference on sarcoidosis that was open to both physicians and patients. Nearly every patient I spoke with complained about horrible fatigue – a kind of tiredness that doesn’t make you yawn so much as it makes you want to stop living. Nearly every physician presenting at the conference noted the symptom in their overviews of the disease, and then went on to dismiss the problem as something that wasn’t fully understood or treatable. I have raised the issue with nearly every doctor I’ve visited since my diagnosis, and I always get some version of the same answer: adjust your lifestyle; rest more. Clearly, these people have never had two year olds.

For me, one of the most irritating aspects of this fatigue is its fickleness. It comes and goes, and I’m usually unable to understand why it shows up this Tuesday, but not last Tuesday; why it might last a week this time, but stay for nearly a month next time. To a certain extent, planning my life would be easier if I simply felt shitty all the time. Then I would put in place a system that ensured me a certain amount of rest each day, and I wouldn’t try to push myself as I do now. It’s quite perplexing why going to the gym will invigorate me one day, but three days later will leave me so exhausted and ill that I feel like I can barely drive the car home.

I suspect that doctors steer clear of the issue of fatigue because it is difficult to assess. Scientists love that which is quantifiable. It’s one thing to look at an X-ray or a CT scan and see something that can be measured; even pulmonary function testing reveals data that can be collected and assessed. Tiredness, though, is slippery. How do you measure one person’s fatigue and compare it to earlier periods or to other people? How do you separate out other conditions, like depression, which frequently go hand-in-hand with having a chronic illness such as sarcoidosis and that also cause fatigue?

Some physicians do seem to be plugging away at the problem. At the sarcoidosis conference, there was a team of researchers from the Netherlands who were attempting to correlate chronic fatigue in sarcoidosis patients with small fiber neuropathy – which is, basically, inflammation and damage of the peripheral nerve fibers. The doctors I saw at Mount Sinai were intrigued by this line of research, and took what seemed like slightly too much pleasure poking and shocking me in an effort to measure the damage to my small nerve fibers. They vaguely alluded to possible treatments, but then told me I could never actually take any of these drugs because of the potential consequences to my heart, which is already affected by the cardiac sarcoidosis.

But the lab rat aspect at least demonstrated some physician interest. The vast majority of doctors seem to treat sarcoidosis patients and their complaints of fatigue as a giant pain in their collective ass. One doctor at the sarcoidosis conference actually stood up in a room full of something like 50 people to comment on the Dutch folks’ presentation of their findings on fatigue and small fiber neuropathy. This ugly, fat woman launched into a diatribe about how her patients were just lazy and didn’t want to do the things like exercise that would make them feel better – and less tired. “So many of them just want to go on disability,” this human embodiment of a toad told the room. A great many of these sage doctors wisely nodded their knowledgeable heads. Silly sarcoidosis people, malingering on the couch, eating bon-bons, and waiting for the disability check to come in. And then they have the gall to come pester these great minds about being tired. Well, Toad Woman, I have news for you and your cronies. I drag my sorry self to the gym more days than you obviously have, given the ample size of your posterior, and I am not rejuvenated.

Come to think of it, nothing really makes me feel less tired, not even sleep. I sometimes fall into bed in the middle of the day out of necessity, but when I wake up, I don’t feel less fatigued. Sleeping until noon doesn’t mean I’ll feel rested either. The best I can figure out is that the tiredness builds inside me during a period of days. Working, taking care of my son, exercising, having people over for dinner, spending a day at the lake… all these activities take a toll on me. Individually, I can handle these tasks, but at some point, the cumulative effect of them is to decimate me. Then it takes days to rebound. I am learning that I will pay the price for having a busy few days. When I’ll have to make good on that payment, and how steep it will be seems to vary tremendously.

I’m sure that part of the gap that exists between doctors and their sarcoidosis patients on the question of fatigue is that until you have experienced this incredible tiredness, you cannot appreciate it. Let me assure you that chronic fatigue is not akin to being sleepy. It’s not as if sarcoidosis patients are all staying up late to watch The Daily Show. No, this tiredness feels like it starts in my bones and radiates out. It hurts to be upright. It hurts to think. My eyes twitch. My skin feels ultra-sensitive and achy, almost like in the early stages of the flu. I frequently run fevers of up to 102 degrees with this tiredness (and, no, I have been assured, the fevers do not indicate some underlying infectious explanation for the fatigue). My joints throb. I can’t stop yawning. Standing at the stove to cook dinner is painful. I worry about driving the car with Andrew in it when I’m feeling this way because I fear I will fall asleep or else space out and do something moronic behind the wheel. I forget appointments. My teeth throb. And I’m sure there are thousands of other sarcoidosis patients out there who have fatigue symptoms far worse than these.

I’m not sure what I hope to accomplish by writing about how miserably tired I feel. Most of the people in my life already know how debilitating this fatigue can be. I hope one or two doctors land on this site and take the time to read and perhaps to understand that when someone complains about fatigue, it is not something to dismiss with a flippant wave of your hand. It’s like having the flu. Perhaps there is nothing medical you can do for them, short of telling them that this is a real symptom of a real illness. But by listening and taking them seriously, you will have done them a great service.

3 Comments

  1. Debbie said,

    Amen to you, I say. I am an MS patient and I appreciate your site immensely. I worked for your brother Ken. As I told him, seeing my thoughts and feelings in print is liberating. This entry is especially me. I relate to every item (sans the toddler), the big fat Toad, the brain fade, eyesight in and out, hoping I do nothing harmful while driving, inability to plan ahead…… I have had a week of horiffic fatigue. Everyday I was going to the pool come hell or high water, but getting dressed was just the best I could do. Acceptance is the best course of action on those days. Slapping a toad around would be nice, but that would probably take too much energy. Fatigue does not equal tired. I get plenty of restful sleep most of the time, but some days are just “some days”. I babble, but would like to thank you for your insight. You and your family remain in my prayers.

  2. Debbie said,

    Amen to you, I say. I am an MS patient and I appreciate your site immensely. I worked for your brother Ken. As I told him, seeing my thoughts and feelings in print is liberating. This entry is especially me. I relate to every item (sans the toddler), the big fat Toad, the brain fade, eyesight in and out, hoping I do nothing harmful while driving, inability to plan ahead…… I have had a week of horiffic fatigue. Everyday I was going to the pool come hell or high water, but getting dressed was just the best I could do. Acceptance is the best course of action on those days. Slapping a toad around would be nice, but that would probably take too much energy. Fatigue does not equal tired. I get plenty of restful sleep most of the time, but some days are just “some days”. I babble, but would like to thank you for your insight. You and your family remain in my prayers.

  3. rebecca said,

    Thanks for the note, Debbie. I’m sorry that you have this kind of fatigue, too. It’s damn lousy, and I’m glad hearing someone else describe it is helpful. Acceptance is indeed the best strategy, but it sucks. 😉

    Thanks for your prayers. If you ever want to vent, feel free to e-mail me.
    You can reach me at chronic.town@hotmail.com.

    Thanks again,
    Rebecca

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