Monday, October 5, 2020

Autoimmune Disease is Not For Wimps


Image found here

So here I am; covered in sweat and am a shaky, exhausted mess. 

It’s not pretty.

Silly Julia. I had the audacity to expect that if I chose to make a small three ingredient batch of cookies today having not done much of anything, I would be able to do it without depleting my energy stores to zero. 

Hoo boy. Was I wrong. So not only am I stinky and slimy and crabby beyond belief, I have dropped to zippo energy levels and am feeling the need to vent. To someone who would truly understand. And, of course, that means I need to share with y'all, my friends. 

I appreciate having this outlet so much. 

It has been a rocky year for me overall. Like everyone, I am sick to DEATH of the pandemic and social distancing. I really don't like campaign years, and this is no different. But this stinko year has added autoimmune insult to injury and has seemed like one giant flare ever since I started the New Year with a serious case of shingles. 

I won't bore y'all with all the nasty details. They're laid out in all their grossness in previous posts. 

Bottom line is that I have been clobbered with a plethora of strange symptoms, new diseases, and medication misadventures, which have taken a major toll on this old body; and when those events all combine in a short span of time, my biggest and most anxiety producing symptom is by far fatigue

I definitely have whined about my fatigue here before. So those who have read my older posts have gotten an eyeful. But this go-around seems to be setting my "normal" bar on energy lower and lower. I have told my rheumatologists since day one that exhaustion, fatigue, and non-restorative sleep are my most significant symptom of autoimmune disease. I know that a great deal of us in this community feel the same. Historically, although doctors heard from their patients that autoimmune fatigue could be life-changing, the typical reaction from health care providers could best be described is indifference. Unfortunately, many physicians who have not been adequately educated about this devastating symptom adopt the same technique of care. 

I'm hoping that with continued education, that attitude will change. I have been so fortunate to have had rheumatologists and internists that have been supportive and encouraging in my battle with the fatigue beast. At a recent appointment, Dr. Young Guy gently acknowledged to me that he feels that aside from minimizing my inflammation and promoting general good health strategies, he has run out suggestions for fatigue specific treatment. Bummer.

In the future, hopefully we will understand the mechanism behind this bone crushing symptom. Recent studies such as this one will help us along. This excerpt was taken from Frontiers in Immunology:

Published online 2019 Aug 6. doi: 10.3389/fimmu.2019.01827

PMCID: PMC6691096

PMID: 31447842

Fatigue, Sleep, and Autoimmune and Related Disorders

Mark R. Zielinski,1,2,* David M. Systrom,3,4 and Noel R. Rose5



According to the National Institutes of Health, autoimmune diseases are estimated to afflict over 20 million individuals in the United States (1, 2). Currently, there are over 100 recognized autoimmune diseases (3), and the prevalence of many autoimmune diseases continues to rise (4, 5). A recent self-reported survey of individuals with autoimmune and related disorders by the American Autoimmune and Related Disorders Association indicated that this population's primary concern is fatigue (6). Over two-thirds of respondents reported that their fatigue was profound, debilitating, and prevented them from completing simple everyday tasks. Indeed, a growing literature indicates that fatigue is common in most autoimmune-related diseases, as well as among individuals with related immunodeficiency disorders (7–12). Furthermore, it is estimated that 7–45% of people in the general population exhibit persistent fatigue (13), while almost 98% of individuals with autoimmune disease report that they suffer from fatigue (6). Fatigue can cause dramatic impairments in mood (14), diminish social aspects of life (15), lead to an inability to perform routine daily activities (16), and limit physical activity and work (17). Consequently, fatigue can severely affect well-being and has a financial burden on the individual, family, and society (18–21).

Fatigue is multifaceted and typically broadly defined making it difficult to decipher the causes in specific autoimmune diseases (19). Fatigue is generally described as a condition with prolonged periods of exhaustion accompanied by the inability to perform activities to an expected capacity. There are numerous aspects of fatigue that can be assessed that define the type of fatigue including the severity of functional impairment; time-of-day/circadian patterns of fatigue; length of the persistence of the fatigue from seconds to days; time between fatigue periods; duration of time necessary for the fatigue to dissipate; influence of sleep loss or disturbances in sleep; impact of depression or anxiety; degree of distress concurrently occurring with the fatigue; type of impairment, such as is cognition, motivation, attention, or physical abilities; and the type of physical performance or activity that is impaired, such as in walking, climbing stairs, socialization, chores, cooking, bathing, work, and sex. The type of fatigue experienced in autoimmune disease is variable These differences are likely related to the particular tissues/organs, cell types, brain areas, and molecular and physiological mechanisms affected by the condition (19).

Currently, there is a lack of efficacious long-lasting treatments for individuals experiencing fatigue in autoimmune disease. This is due, in part, to the limitations in our understanding of the multiple mechanisms responsible for fatigue. Evidence suggests several physiological functions can contribute to fatigue including oxygen/nutrient supply (22, 23), metabolism (24), mood (14), motivation (25), and daytime sleepiness (26, 27). Interestingly, inflammation is altered by many of the factors that modulate fatigue and vice versa (25, 28–30). Growing evidence indicates that neuroinflammation is a primary factor contributing to fatigue (25, 31). Since inflammation plays a large part in inducing fatigue, it is plausible that inflammatory pathways and the subsequent physiological alterations modulated by the inflammation are treatable targets for fatigue in patients with autoimmune disease. Indeed, evidence in autoimmune and related conditions, such as neurosarcoidosis, which is associated with increased lung inflammation, sleep disturbances, and fatigue, exhibit reduced fatigue from anti-inflammatory treatment (32). Herein, we discuss the role of factors contributing to fatigue in autoimmune disease including inflammatory-related mechanisms, relationships between peripheral and central nervous system (CNS) inflammation, particular brain areas and neurotransmitters, and cerebral vasohemodynamics (Table 1).


Figure 1

Continue reading here. 

Over the years, I have learned several lessons in battling my fatigue, the most important being this: to be relentlessly honest in my self assessment of energy levels. If I push myself beyond my capabilities when artificially propped up with prednisone or caffeine, I always -- but always -- crash and burn. And require several days to recuperate. Being the stubborn individual that I am, this is one with which I still struggle. Pacing is also vitally important, as is setting realistic goals. 

Sigh. While these guidelines seem logical, they are really hard to implement. It is especially hard for me this year since being sensible about managing my energy is almost impossible when I don't actually KNOW what my energy reserves are. My limits fluctuate wildly from day to day; sometimes even hour to hour. 

Ah, but the battle continues. I know from experience that another very important tenant in managing my fatigue is exercise. If I simply plop myself in a recliner and give up the fight, long term my reserves will plummet to absolutely nothing and my muscles weaken. So even on those days when I am most exhausted, I do some kind of exercise. I have invested in a recumbent exercise bike, which I absolutely love. Just a few minutes a day may be all I can manage on flare days, but I feel better after, without exception. Good nutrition especially avoiding refined sugars is important, as is maintaining a relatively healthy weight. 

How do you manage your autoimmune fatigue?  


anetto said...

My rheumatologist retired from clinical practice, so I have not yet met the new one. I have been walking in my neighbourhood every day since mid-March - 203 days. It has made me physically stronger but the article you posted mentions 'cognition, motivation, attention' as types of impairment and those are the areas I notice.

I have no good strategies. Napping helps sometimes.

Avoiding sugar is a problem for me too.

Sandy from the UK said...

I have tried to leave a comment on this site and don't seem to be getting anywhere...just won't post...any advice? Sandy

Sandy from the UK said...

Liz Jones said...

Hi Julia ~ I hope you are feeling better. Fatigue hits me extra hard every Fall and Spring, along with vertigo. All I can do is go with the flow....there is nothing I can do to make it better, it just takes time. I am about to head into that period of time with fluctuating temperatures. Praying for you and hoping you are doing "better".