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TJ Wolf

Life With Lupus: Everything Hurts

Photo taken by me of my actual hand when Raynaud's is triggered.


I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.

So What Exactly Is Lupus?

In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with inflammation and its other biochemical weapons and agents to kill cells and shutdown organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.

Everything Hurts

My SLE also features some collateral damage in the form of Raynaud's Syndrome, inflammation of joints, inflammation of blood vessels, inflammation of tissue, muscle weakness, and severe nerve pain.

Everything hurts.

And it hurts almost every single day.

At night it wakes you up.

During the day it hurts to walk, sit, stand up, and especially bend and reach.
Mitchell Hollander/Unsplash

Joint Pain

For me I have joint pain almost everywhere.

The worst is both knees. Every step I take feels like someone is driving an ice pick between the parts making up the knee joint.

I also have pain in my fingers (even as I type this), my shoulders, neck, upper back, lower back, tailbone, hips, ankles, and feet. Every movement leads to some sort of pain. And movement after long periods of being sedentary, such as a car ride, working at a computer all day, or after sleep, can be the most excruciating.

Attempts to bed and reach for things feel like my joints are trying to separate during the action and afterward. A simply reach for something far back on a shelf leaves you feeling as though your shoulder joint will pop out.

Kneeling or crouching usually results in need to grab onto something or an awkward pivot or fall to get out of a stuck position in order to stand up.

Since I work full time using a computer at a desk all day, I sometimes rely on a cane to stand after hours of sedentary stiffness and pain.

When Raynaud's is triggered in your hands, feet, or even lungs, the pain can also be unbearable as your body adapts to a sudden change in temperature or stress trigger.
Kat J/Unsplash

Muscle Pain

Similar to the experience you get having the flu, I experience muscle pains frequently.

In addition, I experience muscle weakness or shaking as though I just worked the particular muscle group through 100 repetitions of an exercise at the gym.

In both instances, muscle pain and weakness, I've done nothing of the sort to strain and exercise the muscle group. The pain and weakness occurs without any perceived cause.
Camila Quintero Franco/Unsplash

Nerve Pain

Sporadic and sever nerve pains might be the worst of all pains.

They come quickly and without any warning. Feels as though you were just stung or bitten by a venomous insect like a bee or fire ant. You even find yourself swatting at your clothing or exposed skin thinking something is there biting or stinging you. The pain can be so sharp and extreme you find yourself startled.

Many times these nerve pains come and go in less than a minute, but before you know it another occurs.

At other times you may feel sensations of water being poured on you or something crawling on your skin. A welcome change to pain, but starling and uncomfortable in its own way.

And of course anytime you react to these nerve events, you move muscles and joints which is more pain.
Žygimantas Dukauskas/Unsplash

Other Internal Pain

Lupus also features some other internal pains caused from inflammation. Some hypothesized or confirmed by Doctors via CT Scans or scopes. Some simply unknown.

For me I experience inflammation within my digestive system multiple times per year. Whether gastritis and difficulty swallowing or colitis that causes me to bend over in severe pain, bleed internally, and seek the Emergency Room or inpatient admission for treatment.

I also experienced Costochondritis for the first time this year which is inflammation of the breast bone and ribs. This felt like taking a line drive baseball hit to the chest.

I also experienced inflammatory arthritis in the form of gout late last year. That basically felt like someone sprained my foot and ankle in all directions and then poured acid on my foot. A sock or even a sheet laying on my foot triggered pain.

Other times I find myself laying awake at night in intense pain that seems to emanate from deep within my lower legs beneath my shins. Somewhat like the feeling of shin splints, it seems to radiate the pain deep inside my leg outward. No one can tell me what that is nor the cause.

The Wolf Within Me

Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.

Next Week - Life With Lupus: Coping At Work

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