June 16, 2016

Accepting that a Chronic Disease Never Goes Away Is Not Enough

Accepting that a chronic disease will never go away is not enough.  I am in danger of losing what I have worked so hard for when problems become worse.  I repeatedly have to decide if I am willing to go into battle or I am going to give up and let myself slip into decline.  Stopping regression takes more than good intentions.  It requires the willingness to act again and again without having therapists around to help.  I think a problem is solved and then it's not.  Here is one example.

Several months ago my central pain suddenly became intolerable at night.  Central pain is constant pain created by damage to the central nervous system (e.g. the brain).  Symptoms include constant burning, pain caused by normally non-painful stimuli, shooting or electric shock-like pain, muscle cramps, stinging, tingling, and a pins-and-needles sensation.  These abnormal sensations can be widely distributed but are usually localized to one body part, especially the hands or feet.
I have a constant burning sensation in my hemiplegic foot.

(1) Taking Tylenol and (2) raising the sheet off of my foot used to help me fall asleep.  In the photo I placed a ball outside the covers to show you what the ball under the covers looks like.  The ball creates friction so it stays put and keeps the covers off the end of my big toe all night long.  When these two strategies were not enough to help me sleep I added a 3rd strategy.
(3) Gel packs are heated in a microwave oven.  WARNING: Gel packs heat up very quickly and are deceivingly cool at 1st touch.  I heat the gel pack for 25 seconds on High because a stroke took away my ability to tell the difference between hot and cold in my hemiplegic leg. To safely remove the gel pack from the microwave and transport it to my bedroom, I put it on a stiff paper plate.  I place the gel pack NEXT to my hemiplegic foot rather than under or on top of my foot. The gentle heat gradually extinguishes the burning sensation in my foot so I can fall asleep.

Neurologists have known about the extinction phenomenon for decades.  Two sensations can sometimes cancel each other out.  This is why you rub a painful body part that has bumped into an object.  Ben Gay cream works because it has Capsaicin which produces a mild burning sensation that cancels the awareness of muscle pain.

1 comment:

  1. You are so creative! And you keep teaching me names for my symptoms. My "central pain" isn't excruciating, but it is constant and annoying. You have given me hope that it will eventually subside. At this point I feel it in my hand and below my knee.
    - Marcelle

    ReplyDelete