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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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).
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).
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.
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.
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.
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.
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.
In addition to mitochondrial etiologies, emerging literature demonstrates genetics, especially epigenetics, have been implicated in complex disease etiologies. For instance, a defect in one enzymatic pathway has been known to be the cause of over 64 conditions and many of them aren’t even remotely related to each other. Nowadays, a gene profile isn’t that expensive and is covered by insurance in some cases. I have pondered about getting tested but decided against it. Its sort of a personal decision.
Sometimes I wonder if we give doctors too much credit. Im sure genetics weren’t that sophisticated when many of the attendings were med students. It sort of gives argument to NP’s who now have PhD’s and know the value of research.
As someone with a very chronic illness, I know how frightening and isolating it can be not to have a great healthcare team. I think sometimes its easy to feel like your life is one tube and IV line after another. For example, with a PICC, I know they can be a hassle with daily flushes and requiring extensive monitoring by many people on my team. But, it gives me the ability to have a decent quality of life. For that I’m grateful. Also there are times during an medical crisis where the hospital is your second home.
I am really hoping that you are able to get a healthcare team you can feel good about working with. For someone with chronic disability, it is vital. I was so distressed to read Emory terminated care without warning. In some rural states, a stunt like that could have been the difference between life and death. Where would anyone go if everything was affiliated to one academic healthcare network? It is just so hard to fathom that could happen without at least extensive meetings and being the last resort where both patient and facility felt this was the best. There was nothing you said that I haven’t said to my healthcare team. I probably also delivered it in a much less dignified way too.
Thank you for your support. I have actually asked for genetic testing, but other than at Emory I’d have to somehow get out of state and nobody has committed to help with the paperwork they have to sign. Where I live isn’t rural but Emory is a monopoly here and even their competitors are afraid to make waves even in so much as charting that they support the patient’s getting further advanced testing if that position runs counter to this huge corporation. I have found that the killer is not only in the adverse material that was written but that any vital helpful information is purposely ommitted. The whole system operates on confirmation bias and then they seal a patients’ fate because nobody who comes later will pick up the pieces to move forward. I have another entry to write, equally shocking to that which I have written in previous ones. The level of unethical behavior in the field of medicine is staggering and what’s worse is how they rationalize and normalize it as though we are supposed to believe it’s perfectly OK! I hope that while we are still alive we have the opportunity to speak before Congress about these atrocities. There are so many personal accounts casually mentioned in groups but never registered officially and I think Congress needs to hear them directly from the patients.