A spasticity in spinal cord injury It's been part of my routine since the first few months after... accident. In my case, it's present every day, but the intensity changes quite a bit depending on my body position and other stimuli.
After more than two decades living with this, I've learned to recognize several of the signs and situations that increase my spasms. In this article, I'll tell you how this happens to me, the treatment I'm undergoing, and what I've learned in practice.
What is spasticity in practice?
Spasticity and spasm are not exactly the same thing.
In general, the Spasticity is related to alterations in muscle control. Caused by injuries to the central nervous system, such as spinal cord injury. It can involve increased muscle tone and stiffness, as well as involuntary movements, such as spasms.
In my daily routine, these are precisely the things I do. involuntary spasms that's what I notice most.
If I'm lying down with my leg stretched out, they get much worse: my legs become stiff, compressing my abdomen and even hindering my breathing for a few moments. I need time to catch my breath, and that makes me tired.
If the leg is bent, with the knee pointing upwards, the spasms decrease considerably.
When I'm in a wheelchair, they also tend to be smaller — but in my case, they never completely disappear.
Spasticity in spinal cord injury: the triggers I recognize
Over the years, I've learned to identify certain situations that tend to worsen my spasms.
Full bladder or intestines
In my case, when my bladder or bowels are full, the spasms increase significantly. Sometimes they get to the point where my left arm starts swinging on its own.
Urinary tract infection
I have also noticed a significant increase in spasms during episodes of urinary tract infection.
These infections are much less frequent in my routine these days, but I've learned that a sudden change in the pattern of spasms can be a sign that something different is happening in my body.
Poor posture while sitting
When I'm sitting crooked, my left leg starts to bounce. My knee goes up and down nonstop, like it's playing a bass drum.
For me, this is usually a sign that I need to reposition myself.
Uneven pavement on the street
When I go over sidewalks with potholes or uneven surfaces, the chair wobbles and the spasms worsen.
In these situations, I need to stop and stabilize myself in the chair to reduce the risk of losing my position.
Crumpled sheet under the body
I don't directly feel the discomfort of a folded or crumpled sheet under certain parts of my body because of loss of sensation.
Even so, I've noticed that my body can react with increased spasms.
Foot out of place on the pedals
My foot is thin and, because it hasn't put weight on the ground for many years, it can slip towards the center of the pedal during spasms.
There have been times when he got hurt without me noticing immediately, precisely because of his lack of sensitivity.
Today I use foam on my feet to help prevent that slipping.
During sleep
The spasms also wake me up in the middle of the night, sometimes with strong jolts.
This interferes with my sleep and is one of the most tiring things about dealing with spasticity on a daily basis.
A few years ago I had a test that identified mild sleep apnea. I don't know if there's a connection between the two things in my case, so I prefer not to attribute one to the other without a medical evaluation.
Spasms and autonomic dysreflexia are not the same thing.
In some situations where my bladder is very full or I am late with catheterization, in addition to increased spasms, I have also noticed excessive sweating, chills, and a very strong feeling of cold.
These symptoms deserve attention because people with high spinal cord injuries may present with them. autonomic dysreflexia, which is not simply a stronger degree of spasticity.
Autonomic dysreflexia is a nervous system reaction that can cause a sudden rise in blood pressure and can be triggered by stimuli below the level of the lesion, with bladder and bowel problems being frequent causes.
Therefore, symptoms consistent with autonomic dysreflexia should not be treated simply as "just another spasm." Those at risk for this condition need professional guidance on how to recognize it and act during an episode.
The episode at the hospital
Once, while I was hospitalized, I told the nurse who was taking care of me:
“"Look, my spasms are so severe, I'm going to end up kneeing you."”
He said there was no problem.
He ended up taking a direct knee to the stomach and was left breathless for a while.
Later, the situation even became a source of laughter, but it clearly shows the force a spasm can have in my case. It's not just a slight tremor. It can be a sudden, strong movement, enough to hurt anyone nearby or even create a risk of falling, depending on my position.
My treatment with Baclofen
In my case, treatment for spasticity in my spinal cord injury began in 2004, about nine months after the accident, during my rehabilitation process at the Sarah Network.
It was around that time that I started using Baclofen, a medication that I continue to use to this day under medical supervision.
At that time, I was taking four 10 mg tablets a day. Currently, in my treatment, it's six 10 mg tablets a day.
These doses are exclusively part of my treatment history These are not recommendations for other people. The dosage and even the choice of medication need to be evaluated individually by a healthcare professional.
In my case, Baclofen reduces stiffness and spasms, but does not eliminate them.
I clearly notice the difference when I don't take the medication: my body becomes much stiffer, my arms stay close to my body, and I have great difficulty stretching them forward.
Even with treatment, the spasms continue to be part of my routine in varying intensities.
Physical therapy and stretching: what I've noticed in my case.
I haven't been able to maintain an intense physiotherapy routine all these years.
My brother helped me with stretching exercises until 2008. Currently, I participate in a social program three times a week.
On days when I do knee and leg stretches, I've noticed a significant improvement in my spasms..
I have also developed limitations in movement and contractures over the years. My knee, for example, doesn't lower completely when I'm in bed, and I also have limitations in my arms.
It is difficult to pinpoint a single cause for these changes, because contractures can involve several factors related to the injury itself, positioning, mobility, and care routine.
What I can say is that, in my experience, maintaining movement and stretching makes a difference in the comfort and mobility I still have.
The spasm as a warning from my body.
Over time, I began to interpret changes in my spasms as a possible warning sign.
When they get too high, I first think about situations I already recognize in my own body: a full bladder, a full bowel, poor posture, or some other change.
Sometimes I feel a "fluttering" in my stomach even before the spasm starts, and I even have to warn those nearby:
“"You're going to have a spasm, be careful with your knee."”
This does not mean that a spasm alone is sufficient to diagnose the cause of the problem.
A sudden or unusual change in spasticity can have different causes and deserves evaluation, especially when it appears along with other symptoms.
Spasticity is not always entirely bad.
A friend of mine, Penha, who lives in another state, often says:
“"At least you're moving, you're stretching."”
There's some truth to that.
Although spasms can be uncomfortable, tiring, and even create difficulties in my routine, spasticity doesn't always have only negative effects.
In some people, a certain degree of muscle tone can even help with certain activities or positions. The problem arises when it interferes with comfort, sleep, self-care, mobility, or safety.
In my case, I mainly learned to live with it and to observe what my body is trying to show me.
Dealing with stares on the street
When a spasm happens in public, many people stop and stare.
I don't like.
I never know what they're thinking, if they think I'm feeling unwell, and often I feel that look of pity that I neither ask for nor need.
I'm a normal person. I just don't walk and use my arms the same way most people do.
This doesn't call for pity.
What I've learned after so many years
The intensity of my spasticity has changed over the years, but the main change has been how I've learned to cope with it.
Today I better recognize my own pattern, the positions that worsen the spasms, and the signs that deserve more attention.
For anyone who has recently suffered a spinal cord injury, I would advise against abandoning rehabilitation follow-up.
Physical therapy, stretching, positioning, and other strategies may be part of the treatment, but they need to be defined according to the needs and limitations of each person.
In my case, the periods in which I manage to maintain the stretches make a noticeable difference.
And there's one important thing I've learned from living with other people with spinal cord injuries: Each case is different..
I have met wheelchair users with many years of injury who practically do not experience spasticity, while other people present with strong symptoms.
Therefore, what I'm sharing here is my experience—not a rule for all people with spinal cord injuries.
Important notice: This article recounts my personal experience with spasticity following a spinal cord injury. General information has been included only to provide context. Medications, dosages, physical therapy, and other forms of treatment should be individually assessed by healthcare professionals. New symptoms, sudden worsening of spasms, or signs consistent with autonomic dysreflexia warrant proper evaluation.
