How to Describe Fatigue Common in Autoimmune Disease

sleeping baby with handIf you have an autoimmune condition, the days of sleeping peacefully and waking refreshed may seem like a distant dream.  Fatigue is one of the most common patient complaints; unfortunately, it’s also one of the most non-specific.  It can represent a multitude of problems, from simply being sleep deprived (though this is technically referred to as “drowsiness”, as fatigue means a lack of energy and motivation) to potentially life-threatening conditions, and just about anything in between.

For this reason, it is always important for the physician to seek out as much context and as many other symptoms as possible, since these additional pieces of information may help to guide diagnostic and therapeutic choices.

Those with autoimmune disease often suffer from varying degrees of fatigue, which can be experienced as a minor annoyance, a regular problem or even a debilitating condition that affects activities of daily living.  Below we consider some aspects of this prevalent medical symptom and its meaning.

Is fatigue classified into different types by the medical community? What are the most common types?

Yes, but what they are and how many types exist depend on who you ask.  It is generally accepted that fatigue can be divided into physical and mental categories, with the former involving muscles that are temporarily unable to perform optimally (“muscle fatigue”), while the latter describes a state of mind where cognitive function is affected negatively, such that a person is unable to think and process clearly.  Mental fatigue may then be further divided into subtypes, depending on whether this is necessary for diagnosis and treatment.  These should be distinguished from sleepiness caused by deprivation, although sleepiness may also be a component of non-sleep derived fatigue.

Another clinical classification system separates fatigue into three groups:

  • Fatigue caused by systemic disease (infection, cancer, immune conditions, etc.)
  • Fatigue experienced by those with neuromuscular disorders during normal exercise
  • Fatigue as “painful weariness”, which often has no obvious cause.

In cancer patients, fatigue is categorized as either acute and related to active disease and its treatment (chemo tends to wear out most patients), or, in undiagnosed patients and long-term survivors, as a more chronic form, resembling chronic fatigue syndrome (possibly unrelated to the cancer itself).  Other times, it is classified based on timing, such as with sarcoidosis, where three subdivisions are early morning, intermittent, and afternoon fatigue.

Finally, MS patients often complain of fatigue, which is separated into “nerve fiber fatigue” (based on pathology), “fatigue of disability” (based on the increased energy required when dealing with such a chronic illness), and sleep deprivation fatigue caused by having to wake several times during the night for reasons having to do with the disease or its treatment.  This video takes you through the three different types of fatigue experienced by those with multiple sclerosis.

When explaining fatigue to my doctor, what details are most important for a diagnosis (e.g., length, relief, associated pain, fatigue in face or muscles)?

All of the details listed are potentially important pieces of information to give your doctor, but timing, especially duration, is among the most crucial.  How long has it been occurring, and has it been steady or intermittent?  If the latter, how long does it last when present?  Does it vary depending on the time of day?  Did it start suddenly or gradually?  Diagnosing the cause of fatigue can be tricky, and any assistance you can provide towards this effort will be greatly appreciated by your doctor.

As suggested in the question, another important aspect is the location of the fatigue, and whether it changes.  Your doctor will also want to know if you experience more than one type of fatigue (see previous question).  In general, the more descriptive and inclusive you can be with your symptoms, the better chance there is of your physician being able to make a diagnosis.  Still, it should be noted that a decent proportion of patients will not receive a definitive diagnosis, nor will the cause become apparent.

Finally, it is especially vital that you tell your doctor about any other symptoms or conditions, as well as any past medical history, even if you think they are entirely unrelated.  In doing so, you should include any recent exposures to toxins, recent travel, medications currently taken, psychiatric issues, and complaints of snoring from others (which may indicate a possible sleep disorder).  What may appear unimportant or inconsequential to you could be an essential piece of information for your provider.

How is fatigue from chronic fatigue syndrome different from fatigue experienced by those with other autoimmune conditions, such as lupus or Hashimoto’s?

Chronic fatigue syndrome can only be diagnosed in the absence of any clear or probable medical or psychological condition, and the patient must meet certain conditions and criteria in order to carry the diagnosis.  Usually chronic fatigue is quite generalized, while individual diseases may present with more specific complaints in terms of location, timing, sensations, etc.  However, this is far from absolute, and chronic fatigue syndrome thus requires strict guidelines for diagnosis.

It may indeed feel the same or similar to fatigue caused by other sources, but can only be said to be chronic fatigue once all other likely conditions have been ruled out, and all required criteria met for the diagnosis.  In addition, chronic fatigue will not abate after getting decent sleep, which may or may not distinguish it from other forms.

In recent years, researchers have determined that there is a biological basis for chronic fatigue syndrome, and have identified five different subtypes of the syndrome.  The hope is that this will lead to blood tests able to isolate one type from the others, leading eventually to more successful and tailored treatments.

Questions for your doctor:

  • Does my fatigue have a name or subtype, and if so, what is it?
  • What are the treatment options for fatigue, and which one(s) is/are right for me?  Are there alternative treatments, and if so, what is your opinion of them?
  • What types of tests are there to determine the cause of my fatigue, and should I be undergoing them?  Why or why not?
  • What types of fatigue should I expect with my disorder?  Will it likely be generalized or more specific to certain areas of the body?
  • Where can I find more information about chronic fatigue, and fatigue in general?  Is there current research being conducted?  What are the findings?

Have you tried other ways to describe your fatigue to a doctor or other health provider other than what’s listed here?  Please share tips below!

 

About the Author
Dr. Rothbard is a professional medical writer and consultant based in New York City, specializing in medical education articles targeted at a variety of audiences, from children through clinicians.  After leaving medicine, he worked as a biology and medical science educator for several years, before deciding to pursue writing full-time.  He may be reached at [email protected].

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

Comments

  1. I describe my life as a woman who is drug-and-alcohol-free with severe Hashimoto’s Thyroiditis & Chronic Fatigue as “always being a little hungover” on my best day. The fog never clears and it’s usually a struggle to “push past it” (a phrase I’ve come to detest, especially because even doctor’s say it to me–as if I’m hearing it for the first time) to accomplish the most mundane of tasks. My frustration with myself–and others–is probably the worst part of it all because I’ve always been a Type A and can’t stand falling short of what I intellectually know I should be able to do in my sleep without thinking twice.

  2. I have had Crohn’s disease since infancy, and am very accustomed to exhaustion and fatigue due to my body being “busy” with the disease. In the past year, the symptoms, although similar, have changed. After about a million doctors I ended up at the Mayo Clinic (for those of you who are unable to find an answer to anything medical, go there! It’s the most thorough and patient based medical care I have EVER had. It’s also amazing if you have a diagnosis, but no treatment that’s worked).
    It was here that I got diagnosed with a little known syndrome called Central Sensitization. With that comes Chronic Fatigue and Fibromyalgia. Basically, I’m including this story here because once I got diagnosed, it turned out that so many things that I had considered “normal” for an auto immune patient or that I (as well as many many doctors) attributed to the Crohn’s were in no way connected and being caused by something utterly un-related. After a lifetime of sickness, it was only through this experience that I understood how important naming everything that might be a symptom is, and finding a doctor who believes the symptoms are real even if they don’t know have an immediate explanation. (Even if it takes a year and every ounce of energy you have!)

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