Tag Archives: chronic-pain

Struggle Against Spasticity

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In my experience so far, the predominant source of pain post-injury has been muscle tightness and spasms. Because my injury resulted in damage to upper motor neurons, which relay motor signals from the brain to the spinal cord, signals which relax muscles don’t go through. This results in spasms and over-contraction of muscles. Through my stay at neuro ICU, I was just starting to feel the intensity and frequency of muscle tightness and spasms gradually increase. I also began to discern differences between types of spasms and ways to manage it.

Some spasms, usually in my feet or legs, seem to occur when touched or moved. Others happen randomly and though not painful, are problematic when trying to sleep. At Harborview my usual solution would be to request oxycodone and Tylenol. Baclofen and Dantrolene, prescription muscle relaxants I take regularly, also provide relief though not as immediately effective. Eventually I learned to counteract random spasms by triggering spasms intentionally.

I discovered this by accident, while attempting to move parts of my body I was still able to move. For example, by flexing muscles in my neck and shoulders in a certain pattern and intensity, other muscles in my chest, abdomen, back and legs would be triggered, tightening similarly to a ratchet or boa constrictor. At first the sensation alarmed me and I would quickly request oxy, not sure if the muscles would keep tightening until I was unable to breathe.

After some experimenting, I realized I wasn’t at risk for suffocation for now, though it’s possible that could change in the future since I’ve learned from talking to others with quadriplegia that some do have restricted breathing from such spasms. For now it remains slightly uncomfortable but effectively reduces the occurrence of random spasms for varying lengths of time afterwards.

Weeks later when I was transferred to the rehab unit, I discovered I had the ability to intentionally start and stop a less intense spasm at will. By using slight emergent movement in my left leg in just the right position I was able to trigger repetitive foot tapping for up to 15 or 20 minutes. It may not have had much practical function but I theorized even limited movement might have some positive effect, whether improved circulation and flexibility, strengthened muscles, perhaps even enabling more emergent movement in the future. At the very least it provides a welcome sense of control over my body and also seemed to help prevent random spasms.

Muscle tightness is another ongoing issue I began to feel worsening while at neuro ICU. It could be temporarily alleviated with the same meds used for spasms as well as with massage, stretching exercises, electro stimulation and acupuncture. Unfortunately nothing I’ve tried so far has been able to prevent the muscle tightness from continuing to get worse over time.

Over the course of just a couple of weeks I began to feel more intensely how the muscle tightness began to affect my perception of phantom limbs. For example, muscle tightening in my legs caused my phantom limb legs to feel bent with knees up while my legs were actually straight and flat. Muscle tightening in my forearms made my phantom limb arms feel tightly shackled. Muscle tightening in my hands made phantom hands feel as if they were permanently holding rocks.

One of the reasons for the strengthening muscle tightness and spasms was the decreasing inflammation from the injury. My muscles at the time were still fairly strong compared to the baseline tone they retain without additional exercise. Unfortunately as certain muscles regain strength with the help of stretches and assisted exercises, tightened muscles and spasms increase in strength and frequency as well. Like many aspects of life after spinal cord injury, it’s a blessing and a curse.

Varieties of Painful Experiences

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When I first arrived at neuro ICU my body felt mostly numb from strong meds and also inflammation from the injury. In the relatively short time I was there I began to sense the changes as the inflammation gradually decreased and sensations of pain emerged.

I experienced the frequency of muscle spasms incrementally increase as arm and shoulder muscles tightened. Little did I know this would continue as a chronic baseline pain to this day. Sometimes it can be temporarily alleviated with medication or other modalities, but the pain is always there.

Also during my stay at neuro ICU, a mild soreness in my throat gradually intensified to the point of finding it difficult to swallow. At the time I didn’t need to swallow often since I took in water and nutrients through tubes and phlegm could be removed with the suction tube. Fortunately that particular pain was permanently relieved about a month later when the feed tube was removed from my nose and throat.

Being unable to move makes one acutely aware of how discomfort and pain exist on a continuum. Without a way to easily relieve oneself of mildly sore muscles, I would sometimes wait it out until it escalated to legitimate pain. In such cases my only option at the time would be to trigger a nurse call light to request a dose of oxycodone.

Sometimes I’d still feel pain after the effects of the oxy wore off. Since I wasn’t allowed to take more than one dose of it within six hours I had no choice but to live with the pain, which was an experience I’ve never had to endure prior to my injury. Like most people, I’d always find some way to block, alleviate, or easily distract attention away from the pain with activities. In some cases the sustained pain became a new baseline and seemed to lose intensity over time on its own.

Being less able to completely avoid pain forced me to examine it and think of ways to ameliorate it as much as possible in my mind. I had previously noticed how emotional pain sometimes diminished with the onset of more immediate physical pain, or how a lower intensity pain would fade in the background as more acute and alarming pain emerged, highlighting the connection between pain and attention.

Another pain management strategy was one I practiced while conditioning myself to be able to sit on a wheelchair for extended periods. In conjunction with binaural beats, I visualized my soul or astral body disassociating from my physical body and floating away, usually orbiting above earth. This imagery happens to be similar to thumbnail and video art often accompanying binaural beats on YouTube. The sound and visuals seem to go together naturally and I found it to be effective for the type of pain I went through.

As if to foreshadow what was in store for my future, just a few days after being admitted to neuro ICU I was visited by Aaron, a research coordinator for a University of Washington study on hypnosis as a pain management therapy for spinal cord injury patients. He was scouting for volunteers for his study which would require a series of one hour sessions throughout my stay at Harborview (and a few months after) compensated for by a small gift card stipend and access to the hypnosis recordings.

Though still in relatively less pain at the time, I volunteered to see if hypnosis could diminish the pain I was starting to feel and to hopefully provide useful data for therapists and patients. Volunteers were split into study and control groups. Those in the study would receive the hypnotherapy while the control group was interviewed about experiences and attitudes regarding pain.

Unfortunately I ended up in the control group, but was allowed access to hypnotherapy recordings after the conclusion of the study and the interviews provided much food for thought about the nature of pain. It also helped mentally prepare me for the increasing pain to come. As it turned out, the hypnosis sessions I listened to didn’t seem to alleviate my pain, though the effectiveness may have been hindered by my mental state and/or setting.

I may give hypnotherapy another try in the future, but in the meantime I’ve found therapeutic massage, acupuncture, electrical stimulation therapy, and CBD, CBN, and CBG cannabinoids to be more effective alternative treatments.