What is Enthesitis (or Why Don’t My Hands Work?)

I have a “funny” disease called PsA (psoriatic arthritis.)  This is not anything like “old people” arthritis.  Please don’t tell me about your grandmother’s arthritis, and how she “cured” it with liniment and a special diet. It isn’t the same thing.  PsA is not just creaky joints – it is an auto-immune disease. 

You see, my immune system is over-active, and it mistakenly attacks my tissues, joints, and organs.  It has already caused neuropathy in my feet, stiffness in my fingers and toes, inflammation and stiffness in my back and neck, a strange blurriness in my vision, kidney failure and liver disease.   It causes pain, inflammation, horrible skin rashes, and deformed joints – but there is so much more to it than that.

One thing that is fairly unique to PsA is enthesitis.   Enthesitis is inflammation of the sites where tendons or ligaments insert into the bone.  It happens in many areas of the body including your heel, knee, hip, toe, elbow, backbone, and the bottom of your foot. 

In my case, it is affecting my elbows, wrists, and fingers , which in turn, affects my use of my hands and arms.  It feels like you have “worked out too hard.”   Your arm muscles feel exhausted, and you can’t even lift your arms when it is bad.  The stiffness and immobility are worse first thing in the morning, and also get really bad after not moving for a while.  Simply sitting too long in a car, or laying down too long can cause the pain and weakness. Your arms become limp and non-functional.  

In my case, it is severely affecting the tendons in my elbows.  You may think this is no big deal, because “what do elbows do?” but you couldn’t be further from the truth.  These elbow tendons are what allow a person to grip things with their hands.

When these tendons are inflamed, you can’t hold a pen, grip the steering wheel of your car, get the lid off of a jar, manipulate a fork or a knife to eat, pick up things, comb your hair, hold your toothbrush, use dental floss, or even press down on a stapler.  This truly changes your quality of life. 

In my case, it also causes additional problems, because I use a rollator or dual canes to walk.  Without my rollator or dual canes, I get off-balance.   Right now, I can’t grip them because of enthesitis. 

I have come close to falling many times because my grip on my rollator just “lets go” and it rolls out of my hands.  When you lean on something and hold-tight to support yourself when you are walking, suddenly having it fall out of your hands is significant.  It is frightening.  It is dangerous.  I fall more often than I actually admit.  Inside, I know, it is only a matter of time before I get seriously hurt in a fall.  I am terrified of this. 

Enthesitis is also a sign of increased PsA activity in your body.  My rheumatologist has increased the frequency of my biologic, and I am already at the maximum dosage.  Only time will tell if this will help.  It needs time to build-up in my system, and may take another 3 months (or more) to figure out if this treatment will ultimately help.  Until then, most of the time, my hands and arms are basically nonfunctional. 

The pain is significant, but I can cope with that.  I have a very high pain tolerance.  What I have trouble coping with is not being able to hold onto things, and my arms feeling so worn-out and exhausted that I can’t hold them up.  What I have trouble with is not being able to walk with any stability, and my constant risk of falling.  What I have trouble with is not being able to grasp a knife or fork, which means I can’t feed myself or prepare food properly. 

Sometimes, I can’t even hold onto a spoon, mix ingredients, or crack an egg.  I can’t cut my meat, or steadily keep my food on a fork or spoon.  When my enthesitis is bad, I hide-away from the world, so no one will see me spilling water from my small, lightweight glass, or having to eat by using my fingers to put food directly into my mouth because the fork and knife are useless.  What helps?  NSAIDS, steroids, and long-term use of biologics.  Because PsA has damaged my kidneys, I cannot take any NSAIDS or steroids.  I choose not to take opioids, which would mask the pain, but wouldn’t improve my situation.  I am already on a biologic, but it can take months for it to build-up in your system.  My rheumatologist hopes that by October I should see some type of relief.  It is now the beginning of July, and October seems very far away. 

Rest and ice are my only ways of getting any relief, but even those are very little help right now.  The more I rest, the stiffer my arms become, and the more the enthesitis affects me. 

And while ice does help, when my enthesitis is acting up, I have trouble handling the ice, I can’t manage the ziploc closure on the bag or tie a knot in the bag, so as the ice melts, it drips all over me.  I can’t hold the ice on my arms because both arms are affected.  When it is in full swing, I am unable to hold the steering wheel of my car, feed myself, or even steady and lift a glass of water to my lips so I can take a drink. 

Those of you who know me, know I am stubbornly independent.  I hate to ask for help, though I do when I must.  But how do you arrange for help when intermittently your hands and arms stop working?  Some days, I can manage, and other days, I can’t feed myself.  And I never know in advance when it is going to happen.

This is the reality of PsA – intermittent, unexpected, unsettling surprises when you least expect it.  My body is attacking itself on a daily basis, and I never know from day-to-day what to expect, or what my abilities, or inabilities, will be.  How do you plan for that?

It isn’t just “swollen joints” – although that is bad enough.  It is stiffness, and swelling, and hideous rashes that make you look like a monster – rashes so severe that they bleed and itch, and basically nothing provides relief.  Conjunctivitis causes itchy, swollen eyes, and uveitis causes sudden blurriness, floaters, and light sensitivity.  Neuropathy keeps you from being able to feel your feet or toes as they deform and swell. 

Fingers and toes curl up.  Back and neck pain are almost unbearable.  And tendons become so inflamed that the entire parts of your body become nonfunctional.    That is the reality of PsA.  Why it is still called “an arthritis” is beyond me.  It is an auto-immune disease and has nothing to do with the osteoarthritis that people get as they age. 

So please, if someone tells you they have PsA, don’t start telling them about how your grandma drank apple cider vinegar or took glucosamine tablets and was “cured” of her arthritis.  Her knee replacement at age 76, while inspirational, isn’t really the same thing.  It isn’t the same thing at all.