In January 2013, when my doctor switched my antibiotics for Lyme to Cipro and Clindamycin, which are both famous for getting into the deep tissues including tendons and bones, but do not cross the blood brain barrier very well. Despite not crossing the blood brain barrier well they did take away the majority of pain I had been experiencing. However, two days after I started the Cipro, my neurological symptoms flared and among other things, I began having tremors and dystonia (unwanted movements). The movements were pretty severe at first and would often pull so hard as to feel as if my bones would break. At first dystonia lasted only a week, then was gone for a week, and then back. When I stopped the Cipro and Clindamycin, the dystonia stayed for good.
In the beginning, the dystonia, for the most part, affected
both sides of my body equally...except for a muscle in my back and neck that
affected only the right side. My feet
and legs would curl up, my hands would curl my fingers in, and my mouth pulled
down on the right side, my neck would pull my head almost down to my shoulder
and the muscle in the back would pull my shoulder up. The movements are generally quieter when I am
rested and tend to get worse the more tired I become.
However, by simple virtue of having to live with them, I
began to find ways to quiet them. For
example, if I reached for a cup, the dystonia stopped…so intentional movements
would interrupt them. However, it is
very hard to do intentional movements all the time…and, as was often the case,
the more I tried to quiet them it would seem like the electricity would build
up and create more movements for a while.
Like, if I went to an appointment and was trying very hard to keep the
movements quiet, when I left they would go wild for a while until the energy
was dissipated.
That said, since I used my right side more than the left,
after a month or so, the right side started to become more quiet than the
left. Indeed, one of the compromises
that I had to make when using the right side was to allow the left to dissipate
the energy build up caused by the right not-moving. However, at some point, I realized that this
was like exercising only one side of the body…and got that I would need to do
the same with the left side…that I would have to use it more than I had been
doing.
Ironically, my left leg moves less than the right, but
again, I use the right more often, like when driving. Also, as my left leg which used to tingle
like pins and needles a lot, is now mostly numb…so it is a weaker leg than my
right and tends to drag…so I need to count on the right leg more.
So…my plan of action is to do what I did for the right side
now with the left and see if I cannot get the movements on the left side to
quiet as well.
What worked for the right arm was to push it against
something, like my leg. As well, I used
it more, like for driving. So I am trying to now push the left arm against my
leg as well as trying to use it more…and see if I cannot balance it out.
Because my left hand curls my fingers so hard, the nerves in
my knuckles have become extremely sore.
However, I have found that if I hold something in my left hand it can
prevent the knuckles from flaring.
I have also noticed that if I provide a sensory input to
some of the areas…like rubbing the back of my left hand…the sensory input can interrupt
the movements. Not only is this giving my right hand something to do, it is temporarily
confusing the left hand.
Regarding my feet, and even perhaps my left hand, I have
been considering using the product known as Theratape to see if I cannot come
up with a way to tape to feet and hand to perhaps provide that sensory input to
quiet them. Was also thinking of figuring a way to use this for my neck muscles as well.
Oh, and chewing gum I have found will quiet my downward lip
movement on the right side of face...which is nice.
