Fatigue; Here’s A Great Analogy and Some Examples

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 Ken McKim, the husband of a woman with Crohn’s disease likens fatigue to if a healthy person went around chronically sleep deprived (but at least in their case they can sleep extra and improve their situation), whereas with fatigue we can’t.
5 Till 6
He proposes that healthy people do an experiment for one week in which they stay up all night except for 4 hours and the next day do all their normal activities, then when they go to bed set their alarm to go off every hour and stay up for 10 minutes each time they turn it off before going back to sleep.
He says that by the end of such an experiment one should have more empathy as to what those of us with fatigue go through. It occurred to me that this would be a good experiment for all medical students because even with all their cramming for exams they probably still don’t get the full effect of what it’s like to have a chronic illness.
Doctor let down
I woke up this morning and took a shower, and felt alert just long enough to eat some breakfast, but as soon as that was over my energy drained away again. I again felt exhausted and have been finding it hard not to drift off to sleep without warning in the middle of swhatever I’m doing. I go from being exhausted but awake to suddenly finding that I’ve drifted off (only after I’ve done so and wake up).
Atlas Statue
Back when I was seeing the sleep medicine specialist at Emory I was supposed to have a daytime sleep study to rule out Narcolepsy but in order to do that you had to sleep 6 hours first and at the time I couldn’t do it because of the myoclonus keeping me from falling asleep and then once I did, people were tinkering with equipment in my room waking me up because of the noise and light coming in the door.
Looking up at doctors after fainting
Nevertheless I can make a pretty educated guess that the fatigue caused by my chronic illness has alot to do with these sleep cycle abnormalities, particularly the central nervous system problems I have which affect the autonomic nervous system. In order for the brain to function correctly it first must have enough energy. The nighttime sleep studies I had did yield some important information in that my sleep/wake cycle is royally messed up showing Delta waves at the beginning (even before falling asleep) when they are only supposed to be showing up in the last sleep stage.
brain waves on screen
This was also documented in just about every EEG I’ve ever had since second grade when I was first brought to a neurologist because of near fainting spells. Some research has proposed that there may be a mitochondrial component to the severe fatigue suffered by people with chronic illnesses.
in bed
PubMed has numerous papers that have been published on the subject and in recent years there have been more and more scientists interested in this angle. The papers shown under the search Mitochondrial Component to Fatigue will bring up papers you can look through and print out those you feel pertinent to give to your doctor. It is not uncommon for doctors to try to dismiss research as being from “junk science journals” etc., but the papers linked in PubMed are considered fully legitimate professional medical journal articles from all over the world.
GQ Style Doctor
Don’t accept a doctor’s sweeping generalization that because studies were published in foreign journals outside the United States (or outside your country if you live elsewhere) that they are not legitimate sources. There are many fine and well designed and documented studies that come out of places like the Netherlands, Australia, and even Asian countries or India. You’d be surprised where some of the most cutting edge research comes from.
Never Settle
Also, don’t be afraid to write some of the investigators listed on these research teams. They often provide an email address in order to give the public an oppourtunity to communicate with them and ask questions. By doing so you just might find out about important studies that are accepting participants that would benefit people with your condition and these scientists might even have suggestions that your doctor can try to treat your condition more effectively right now!

If your doctor is offended by this and unwilling to discuss these new approaches with you, chances are you have the wrong doctor.

Dishonest Doctor
Remember that if you have severe fatigue you only have so much energy to work with in a day and a truly good doctor will understand this and respect and appreciate the fact that you put in the time to take an active role in your healthcare and bring him this written material. If he/she truly has your best interest at heart he/she will then genuinely look into these options for diagnosis and/or treatment and will take the legwork from there.
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Way too often we as patients end up doing their jobs for them because of their stubborness and inflated ego, because they have too much false pride to admit when they need to consult professionals who know more than they do.
Doctors in rounds
This is when the relationship becomes more about their needs than yours and if after trying to present them with this information they reject it out of hand more than a few times, it is likely that they ultimately won’t give you the care you need and deserve.

It should never be OK with a doctor to allow you to suffer any more than absolutely necessary and if there are still options left not to use them.

I had to learn that after I nearly wore myself out because I found myself working harder than my GP at Emory. At first when things weren’t getting completed and questions weren’t answered I thought maybe it just slipped his mind because of his patient load or the time got away from him, but I am very conscienscous about following up and at some point had to face the fact that my doctor was not the benevolent and altruistic person I thought he was and that chances are no amount of education was going to change that.

Any doctor that takes patient reports out of the equation might as well just turn in his medical license right now because he’s no longer acting in the patient’s best interest, he is treating his patient as an inanimate object.

For a chronically ill highly educated patient (which most of us become after so many years) it is imperative to have a doctor who bottom line accepts that this is the patients’ body and that with their being a competent adult over the age of 18 only the patient has the right to make the ultimate decision in treatment. A doctor can only advise based on his training. He cannot be inside your body to prove what your body is experiencing and how it affects you, nor how much suffering you can stand. Objective testing is only a tool and physicians have to realize that it can’t always detect everything beyond a shadow of a doubt. It has its limitations, and the clinical presentation is equally, if not more important in assessing what’s going on medically.
Doctor giving bad news
Prolonged fatigue is one of those symptoms that science does not have the knowledge to fully quantify, nevertheless it is very real and cannot be dismissed as psychological, or irrelevant information. To do so is very dangerous, because fatigue is a very good indicator that something is in fact seriously wrong in the body.
Healthy patients do not have this level of fatigue, and the distinction between fatigue and depression, for instance, is that patients with fatigue want to do things, they wish they could, but just don’t have the stamina. People who are depressed generally lose interest in hobbies and things they liked to do previously.
Creating
I can attest to this distinction, as I have interests that have continued throughout my illness and I remain enthusiastic and interested in them. It bothers me when I can only watch them in videos and not partcipate because of my level of illness.  I am fatigued yet I’m anything but apathetic. I love life and look at each day as an adventure!
Inspired Woman
An example is this; I absolutely love snakes and have two Ball Pythons. Many of the people I’m involved with online surrounding this interest travel to reptile shows where they can pick out snakes and supplies and caging for them in-person and meet up. I would really love to do that, but seeing as there are only two a year a distance away outside Atlanta, (in Cobb County) I have problems getting there with handicap transportation, and it tacks at least 2 more hours onto my day including a transfer to another county service if I were to book the trip. (Not to mention it costs double fare).
precariously holding boxes
Then if I were to stay a decent number of hours to be able to see everything, I would be sicker by the time I returned home. If I went in somebody’s car I could leave when I became too exhausted, but on public transit you can’t do that. (A time is prearranged to return and if you need to leave earlier they will not accommodate you no matter how ill you are).
Navigation
I would love to go to the big reptile show at Tinley Park (in Illinois) but not only am I not able to afford the travel and hotel for several days, the travel itself would be too taxing for me right now.
woman-blowing-nose
Another example; I really love art and have been trying to come up with other forms of art I can make that don’t require so much fine motor dexterity and although I’ve found some that are easier for my hands when I actually began doing these projects I found them to be incredibly exhausting and take me much longer than they should. I actually sweat with the effort it requires, and either really pay for it in the several days that follow or have to stop before I get it done. This is very frustrating because my motivation is still there but I can’t complete the task or at the times I do I do it with great negative consequences.
Shoveling coins
My best guess in treating fatigue would be to use compounds that directly address a mitochondrial disconnect, so if any of you reading this find new developments in this area of science please feel free to post them here in the comments, as it might really help others suffering with the same barriers. Please post sources if you can.
Barrier
Somehow the patient community must get these ideas across to doctors in clinical practice so that rather than disengaging from us when our illness is prolonged they look at it as something worth working on. Even if a cure is not close by, there can be a sense of accomplishment for both patient and doctor by adopting an investigative approach and trying things even if just based on theory.
Interview
Sooner or later improvement will likely happen with that type of perseverence. That is better than doing nothing, regarding the patient as hopeless and a “treatment failure”, and just tuning them out. That should never be the response to a complicated case. Just like pain, the continuing fatigue a patient experiences is a signal from the body that the doctor’s job is not complete.
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Change is Coming; Our Bodies, Our Choice!

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Momentum is building within the chronic illness community and as the numbers reach epidemic proportions we are rapidly becoming the majority and becoming a formidable voting block as well.

As patients we are taking our health into our own hands and insisting upon the respect and dignity we deserve in forging our own path to wellness…and on our terms. As we become more and more educated the traditional medical hierarchy is increasingly proving to be outdated and non-applicable given the current state of affairs.

This is our life and our body that we live with 24/7. The doctor who treats or fails to treat can go home and turn his mind to other things, whereas whatever treatment decisions are made will follow us, the patients, when we return home. These decisions and the orders or lack thereof surrounding them often determine our level of relief or suffering. Our doctors, (while well-meaning in the best case scenario) cannot fully ever grasp what we deal with on a day-to-day-basis, so in fairness they need to acknowledge and give reverence to the truth that nobody can know the workings of our selves better than we ourselves.

There are many things no medical textbook can teach you.

In the real world organs in the body don’t always work that way, and to insist on believing they must is to deny the patients’ very humanity. One cannot approach the human body the way a mechanic approaches a car. We are much more complex than that. Human beings are both consistent and inconsistent. That is what makes us human. Unlike machines we feel everything that is done and not done to our bodies and to our minds. This in turn adds to our physiology for better or for worse.

A good and wise doctor understands that he/she must not ever eclipse the patient, but instead be a good facilitator and advocate for that individual and always fulfill a supportive role throughout the course of the patients’ life, not to decree, mandate, or gate-keep, but to pave the way for their patient’s own individualized path to healing to the best of their ability, to remove obstacles and never to create them. The patient, especially the complex chronically ill patient’s life is hard enough. The goal should always be to make it easier.

Ethics demands that the doctor/patient relationship in today’s modern society be one of equals, a partnership toward a common goal, while always remaining mindful that the patient has the final say in the body which the patient alone owns. This philosophy must also extend further than the office of the primary care physician and carry over into all areas where medical professionals exist.

Doctors, healthcare systems, medical schools, conferences, and regulatory decision-making bodies can no longer afford to shut us out, put us off, nor deny us an equal place at the table. We are becoming a force to be reckoned with and a strong source of information  not only of help to ourselves and our fellow patients but also to doctors, residency programs, and continuing education programs. It is often we, the patients who dig up the research papers, find the links, and connect the dots our doctors don’t have the time or interest to seek out.

We, the patients notice shifts and changes in our bodies that provide clues the doctor might otherwise completely miss. Without clinical symptom monitoring and record-keeping a doctor often has no way to know even what tests to run or where to start looking. Listening to the patient is probably the most important part of reaching an accurate diagnosis. This is why it’s so much more difficult to treat animals and small children because they can’t tell you what’s wrong.

This is also why perceiving a patient as an unreliable source is so dangerous. They are capable of telling you what’s wrong but if you don’t believe them on a core level you are dismissing and/or throwing out important information you need in order to assess, diagnose, and treat them.

For true equality to happen first doctors and the institutions that train them must acknowledge the need for change.

It is one thing to be ignorant of new knowledge, but quite another to refuse to allow it in and instead stubbornly hold onto one’s ignorance.