Sunday Stroke Survival: Action/Reaction

With the virus still active in places and being in the high risk category, I've put off the idea of having the baclofen replaced. It's still simmering on a back burner. It would have been off the stove entirely if it hadn't worked so well.  I've got to do something about the pain the spasticity is causing.

Sitting around and waiting has never been an option for me when there's another action I can take. I've decided to take another round of Botox. It's scheduled for September 11th. It's been three years since I've voluntarily injected the poison into my body. While I'm looking forward to it/not looking forward to it, it is some relief to the immobility and pain. At this point 45 days out of 90 is better than nothing because three muscle relaxers aren't touching it.

In talking to the nurse yesterday, I'll be back to the 300 units for injections into my muscles. Since there has been a break in the cycle of injections, we discussed whether my body would reset back to square one was possible. It is entirely possible that the lower unit dose will hold for the entire 90 days between injection cycles for pain control and improved mobility with PT like it did 7 years ago. Here's hoping.

Others have told me that they don't understand my pain with my spasticity. They have spastic muscles also, but it does not cause them pain while mine seems off the charts. While the contracted muscles causes a tightening sensation, it's not what technically causes my pain levels to shoot me into space. So, I have been evaluating where exactly the pain is and what causes the pain to increase so much. I have discovered there are several sources.

Although I consciously try to minimize the actions that intensifies the pain that only accounts for less than 50%.

1. Movement of the affected arm or leg while episodes of increased tightness is present. While the tightness or high tone is always present, sometimes are worse than others.
2. Cramping of already tight muscles. Not just rhythmic waves of cramping (tolerable) but the sharp, "Charlie horse" cramping that accompanies a movement the spastic muscle does not like (weight bearing, leg in full extension, or moving it an inch this way or that) . Once started, the Charlie horse cramp takes on a life of its own. It demands the arm or leg be held in a certain spot or the cramp increases in intensity. This cycle can last two hours, takes a break, and then starts up again.
3. Incident muscles and joints trapped between two spastic muscle groups. My trapezius, shoulder, and neck instantly come to mind. I recovered my shoulder muscles range of motion early after my first stroke. In spite of injuries, I still have that range of motion.  But its range of motion is limited by spastic bicep and pectoral muscles. So it wants and needs to move but can't. 
4. Psuedo involuntary movements of spastic muscles like with coughs and sneezes cause additional contractions of these muscles and cause pain. Even the simple acts of of blowing your nose or clearing your throat takes the contraction affecting these muscles.

Then there's my list of 'try not to do. that cause pain. Things like hitting a chair with my affected arm's funny bone, which is decidedly unfunny, causes a rippling effect into spastic muscles. The dead weight of carrying a spastic limb also causes its own level of pain. I try, when seated at the table, to keep my elbow supported on the table. The brunt of the weight of my arm is no longer carried by my shoulder. But with movement, like taking a drink, my arm will slip from it's perch causing a jarring pain in my shoulder and bicep. While walking when the spasticity isn't too bad, I can hook my thumb into the waistband of my pants to relax or help support the weight of my arm. All bets are off when the spasticity is very bad and my arm is drawn up into my chest. All six or seven lbs of dead weight rely on my shoulder to carry it. Don't think that's not too bad? Try carrying a half a gallon of milk around all the time and you'll see what I mean.

So it's back to Botox for me again. One step forward and two back. Sigh! It's like my mama used to say, "There will always be an again."

Nothing is impossible.