Thursday, October 29, 2015

The Successful Patient: Autoimmune Fatigue

Modern life exhausts the normal human being.  We're doing it to ourselves.  We can choose to take control of our schedules so that we sleep a full eight hours every night, or we can continue to fill every minute of every day with work, electronics, and social activities.

No one chooses the exhaustion that is autoimmune fatigue.  This is the kind of fatigue that no amount of sleep can alleviate.

What does it feel like?  It feels like lead weighting down the whole body, and it's nearly impossible to move. You do not want to move. Your eyelids want to close, and it's easy to fall asleep in the middle of something like eating breakfast.  It's the kind of fatigue that hits with a fever like with the flu, for example.

Fever.  Actually that analogy is closer to the truth than you might imagine.  An autoimmune response occurs as the body's immune system attacks healthy tissue much as it would attack an invader like a flu virus.  Such an autoimmune attack can be accompanied with a fever, but if it's not, it's almost always accompanied by fatigue as if there was a fever.  The next time you get the flu, take note of how you feel right after the chills, when the fever hits. Now imagine that feeling in your life all the time during the flare of an autoimmune disease.

Immune System's T-cells

What diseases are autoimmune?  There are about 80 autoimmune diseases, according to the AARDA (the American Autoimmune Related Diseases Association). Here are some familiar ones:
  • Type 1 Diabetes
  • Multiple Sclerosis
  • Celiac Disease
  • Psoriasis
  • Lupus
  • Rheumatoid Arthritis
If you have one autoimmune disease, you have an increased chance to develop another.  Autoimmune diseases tend to cluster.  It's not uncommon for someone to have 3 or more, which can be a real treatment challenge.  A definitive cause of autoimmunity is still unknown, but researchers have found a genetic component as well as certain environmental triggers for some of the diseases.  Recently, researchers have focused in on the gut microbiome, or the bacteria that lives in the small and large intestines, and how it may influence the human immune system, most of which is located in the gut.

Earlier this year, I wrote at this blog about being diagnosed with Interstitial Lung Disease.  This is an inflammatory lung disease, or autoimmune, and causes Idiopathic Pulmonary Fibrosis.  Idiopathic means "unknown cause," pulmonary = lungs, and fibrosis is the result of scarring, i.e. stiffening caused by scarring of tissue. The inflammatory process causes scarring.  I also have psoriatic arthritis which has been flaring.  Between the two of them, the fatigue is, on some days, crushing.

Swollen foot/ankle from Psoriatic Arthritis

The fatigue during the last few weeks has kept me from writing as much as I'd wanted to, and has kept me from mundane activities like chores. I have focused on doing what I can and going to my part-time job as much as possible. I also don't talk much about my physical challenges simply because I know that the majority of people are not interested or do not really understand.  This is what people with autoimmune diseases learn fairly quickly. When we say we're really tired, it means something above and beyond what a healthy person means.

I continue to do what I can, and will continue to write posts when I can here.  If I disappear some weeks, the chances are I'm dealing with the fatigue again.....

Update Nov. 12: Much to my surprise, it wasn't the psoriatic arthritis flaring that caused the swollen feet, ankles and lower legs.  It was tapering off prednisone, a common corticosteroid, that caused the swelling. Back on prednisone, the swelling has subsided dramatically, and my energy level has increased. But the autoimmune fatigue is never far away.....

No comments: