While I feel I can master the pain effectively, I find brain fog and fatigue more vexing. When I get to the point that I can't cope with the pain it's usually because the fatigue has exhausted me. Yes, I separate fatigue, exhaustion, and being tired. I find the three wholly separate physical experiences.
SIMU (Stuff I Made Up - a phrase I learned this week at a conference, thank you Dr. Ready)
These are my non scientific, real world use of these words, and my video game analogies.
Tired: the state of needing to sleep because the day is over, it's your bedtime or you got up early. In gaming terms you are down to one to a half a heart of life energy. You can still look around to find some hidden hearts to refill (in real life I turn to caffeine) or give it time (in real life I'd love to take a nap or rest). In my body I feel tired when my eye-lids want to close.
Exhaustion: the state of being depleted from having any remaining biological energy to put towards anything more than breathing and sometimes even the breathing is hard work. In gaming terms, you ran out of hearts, there is nothing to do but respawn (in real life you replenish from a good night of sleep). In my body I feel exhaustion as a total body shut down.
Fatigue: the statement of being unplugged by biology, like the electrical-chemical signals refuse to fire. Being out of gas, out of life-force. In gaming terms your character has been poisoned. The number of hearts are irrelevant because they don't work right. In real life, sleep doesn't fix it. Nothing seems to fix it. In a game the poison will slowly deplete your hearts until you become exhausted, the only fix is a hidden antidote. In my body I feel fatigue like someone has turned the world around to mud and I have to push myself to move my muscles and my brain to think.
One way I know I'm about to enter a flare-up is a severe fatigue that hits out of nowhere. It is usually combined with brain fog, so I'm not always really good at recognizing that the fatigue is the start of the flare until the joint swelling, stiffness, and pain set in. Then it's like, "oh that explains why I've been so fatigued!" I find it so vexing because I've found nothing that works to really help acute fatigue: not rest, nutrition, hydration, caffeine, meditation, exercise...
In times like these I turn to the scientific literature. It is the geek way.
The first thing I find is that fatigue, like pain, is a common symptom in many conditions - duh, but an okay starting point. When I nerd-out reading sciencey stuff I try to start with the background (when was this thing recognized as a thing), then review current understanding of the cause, followed by a review of treatments. By doing so, I get a better understanding of the reasons why an intervention might actually work.
Background: In 2007 fatigue was added to the list of core symptoms that needed to be measured in clinical trials.
Causes of fatigue in RA: In a well written summary in Arthritis Today (April, 2015) it identifies 5 common causes of fatigue: inflammation, pain, stress, depression, and poor sleep.
Okay, if you know me I like acronyms... And these 5 factors make one great acronym to describe how most of us feel about the fatigue, P.I.S.S.D - pain, inflammation, stress, sleep, and depression.
Reading through the abstracts of around 40 articles it seems that these 5 factors are consistently identified as the causes of fatigue.
Treatments that work: Like pain, it seems the research is all over the place. Each intervention separately addressing a different part of fatigue, but none of them really addressing all known causes. Thus, we can look to the five causes to put together our own fatigue master plan.
Inflammation: from OTC meds to biologics, us folks with RA are highly familiar with anti-inflammatory medicines. There are also dietary changes and worry management that can have large impacts on the inflammation as well.
Pain: what I am alive to study, research, and talk about. The Mastering Pain Method addresses all four parts of P.A.I.N.: Physical intensity, Agony, Impact, and Negative stigma.
Stress: training that vagus nerve, gaining greater control of the nervous system, turning off the fight-flight-freeze response and turning on the relaxation response. These are all ways of saying the same thing - relaxation is a biological state that takes practice, it is a skill that is developed, not just a concept to know about, but a behavior to be engaged in. Physical activity is also a great way to manage stress, use up that adrenaline! Hard to engage in with RA and fatigue, but I'd be remiss not to mention it,
Depression: great interventions exist for depression! Psychotherapy, plus meds, has long been shown to have the greatest results. Be sure to have a good fit with your provider. They can have the highest training, the best reputation, the most referrals, but if you don't feel comfortable it won't be as effective for you. Depression has also been shown to improve with physical activity.
Sleep: get a sleep study! I cannot tell you how many folks I know who got a sleep study and then discovered they have sleep apnea and a lot of micro-arousals. Once cleared from the sleep disorders, follow good behaviors to improve sleep, check out the recommendations of the National Sleep Foundation https://sleepfoundation.org/ask-the-expert/sleep-hygiene. Sleep has also been shown to improve with physicals activity, but also gentle forms such as tai chi and gentle yoga.
So, it seems the answer to the vexing problem of fatigue is that it needs a comprehensive approach, just like pain. Next time I have pre-flare-up fatigue I'll need to remember that this probably means I'm PISSD, it's time for self-care and, if I can muster it, a little mild physical activity.