Most wheelers who live with spasticity know all too well just how irritating and inconvenient spasms can be and how much they can limit your ability to get through the day. Spasms can be more than just a pain in the keister. They can also be disruptive and dangerous — leading to insomnia, pain and further injury.

The nerves of the brain and spinal cord form a complex communication circuit that controls our body movements. Information on sensations or processes such as touch, movement or stretching is sent up the spinal cord to the brain. In response, the brain interprets the signal and sends the necessary commands back down through the spinal cord to tell the body how to react.

An SCI disrupts that flow of signals, making them bounce back to the spinal cord’s motor cells, where they cause a reflex spasm. This can result in a twitch, jerk or stiffening of the muscle. Just about anything can trigger and sustain spasms. And, as with so many other things SCI-related, spasticity varies widely from person to person.

Common spasm triggers include irritation to the skin, such as rubbing, chafing, a rash or ingrown toenails, and anything very hot, cold or painful. Pressure sores, a urinary tract infection or full bladder, constipation or large hemorrhoids can set them off, as can a fracture or practically any injury below the SCI level.

I’ve come to intimately know spasms and the havoc they wreak over the past 33 years. I’ve gone through most everything physical therapists and pharmacists have offered to rid myself of them. Initially, I tried contorting myself into advanced yoga pretzel positions, a common approach recommended by PTs, who advocate range-of-motion stretching to maintain flexibility and reduce muscle tightness. I also tried weight-bearing or standing with support to help stretch muscles, and I even wore splints, braces and progressive casting to provide continuous muscle stretching.

Everyone Is Different

Like many with spinal cord injuries, Ben Hernandez, a C5-6 incomplete quad, deals with spasms daily. When asked if he experienced bouncy leg syndrome, contractions, extension or other types of spasms, he quickly responded, “Oh, pretty much all of the above.”

Whether it’s cold temperatures, pain, a UTI or something else, Hernandez has learned what to expect in the 24 years since his injury. Likewise, he knows what works and what doesn’t for his body. He often has better luck with natural solutions than with pharmacological ones.

“For a while, I took about 160 mg of Baclofen, along with Klonopin, Valium and Elavil for nerve pain,” he says. “The side effects, primarily mental acuity, were too much to deal with.” He quit cold turkey against his doctor’s advice, which led to a seizure.

His experience is a good reminder that many of the most common anti-spasticity medications come with serious and potentially dangerous drawbacks. Even moderate doses of some of these medications can result in drowsiness.

He now sticks to marijuana, which he has found helpful, and what sounds like a lesson plan for a yoga class. “I stretch twice a day following a routine of yoga poses for about 30 minutes. I also do massages, using a TheraGun and a licensed massage therapist,” he says. “Deep breathing is quite effective, especially breathing in through the nose and out of the mouth, with the exhale a bit longer than the inhale.” He occasionally incorporates acupuncture, acupressure and dry needling.

More rigorous exercise also helps reduce his spasms, as long as he can fight through an initial increase in spasticity. He regularly sits for 45-minute sessions on an FES bike.

Jim Erjavec, a C5-6 incomplete quad, battles powerful spasms that make daily activities difficult. “I’ve got great grip in my right hand, but the tone interferes with that,” he says. “My quads are very strong, and spasms can be particularly bothersome while dressing.”

Like Hernandez, Erjavec says his spasms can be triggered by a downturn in the weather or becoming chilled. “If I stay warm, I’m better,” he offers.

He also stretches for spasm relief but doesn’t enjoy the same results as Hernandez. “Stretching helps some, so does exercise and the vibration plate,” he says. “I tried massage as well, but nothing really solves the problem.”

He experimented with marijuana and CBD, but to little avail. “I’d get some short-term relief, enough to take the edge off, but nothing made the spasms totally go away,” he says. Marijuana relaxed him some but didn’t help the spasticity all that much. “It did help for sleep,” he says with a chuckle. He now takes 30 mg of Baclofen spaced throughout the day, down from 60 mg.

Sherown Campbell, a C4-5 incomplete and walking quad, reports a similar experience with spasticity medication. “I tried Baclofen. It took the edge off but didn’t solve the problem. The spasms never went away,” he says. “I haven’t utilized CBD much. It was helpful, but not enough to justify being a normal thing for me.”

He mainly deals with abdominal and triceps spasms, primarily triggered by cold weather and inactivity. They usually subside once he spends some time up and moving on crutches or ski poles.

“My quad spasms are quite strong,” he reports, “but I can usually overpower them. I also deal with abdominal and triceps spasms, along with the ones brought on by cold or stress, which can also be quite intense.”

He learned to see that not all spasms are bad. “Early on, I was able to use the spasms to help with transfers, blood pressure and function/movement,” he says. “They can also help with erections.”

Research and a host of PTs confirm that spasticity is not always harmful or bothersome, nor do spasms always need to be treated. Sometimes spasticity can help with functional activities such as standing or transferring. Spasticity that causes your fingers to bend can help you grip objects. Spasticity can also signal that you have a medical problem that you might not know about otherwise, such as a urinary tract infection, fracture or pressure sore.

Erjavec has often wondered if his leg spasms might be the key to walking again. “If the spasms were milder, I might be able to walk,” he says.

Pumps And Other Measures

Due to progressively more severe spasticity, I eventually resorted to a Baclofen pump. Installed via surgery, it delivers a small dose of the drug directly into the spinal canal via a catheter from pump to canal. It also comes with a bonus —because the dose is so small and delivered to a contained location, the systemic sedative effect is avoided, and I don’t end up falling asleep.

The pump worked like magic until, alas, it didn’t. Evidently, I possess bad pump juju, since the catheter broke as it entered the canal, preventing the drug from reaching it. Another repair job came approximately 18 months later.

That fix lasted about two years until one day, as I emerged from the shower, I happened to spy the pump emerging from the right side of my belly with a clear enough view to read the serial number. Rather than trying to stuff it back in and playing the “don’t try this at home” sort of fool, I sought a surgeon to perform the eviction. It’s important to mention my pump experience is far from common.

Jesse Collens, a C1 quad from Tacoma, Washington, calls the Baclofen pump he’s had for 10 years a game-changer. “I used to have full-body spasms in bed that made it hard to breathe,” he says. He got the pump after oral Baclofen proved unable to tame his spasms. It’s been smooth sailing since doctors found the right dose for the pump. He goes in every three or four months to get it refilled and ensure it’s working properly. He replaced the pump itself once — they have a seven-year battery — in what he describes as a quick outpatient procedure.

Other surgical options far less commonly performed because they are not reversible include cutting a section of the spinal cord (myelotomy) or nerve roots (rhizotomy) or lengthening and transposing a tendon.

When spasms are limited to only certain body parts, people can opt for nerve or motor point blocks. These consist of phenol alcohol wipes, though these are now being replaced by Botox injections, which, although temporary, allow more targeted and predictable results. Botox bladder injections, for example, have become a popular and common way of treating severe bladder spasms.

None of these interventions guarantees total relief in banishing spasticity from daily activities, though each may provide some relief. Effectively dealing with spasticity requires we learn our bodies and maintain a checklist or inventory of possible triggers to scan during a particularly nasty spell — do my toenails need trimming, do I have a UTI, are my clothes too tight, do I need more rest, am I too cold? What do I need to avoid or simply not do?

It’s also a process of learning what works and doing more of it. We must engage in constant, evolving negotiation, weighing the benefits of different interventions against adverse side effects and deciding if the activities that trigger the spasms are worth the price. And much like every other aspect of SCI/D, it requires we reconcile ourselves to learning to live with that which we can neither control nor change.

Hernandez suggests probably the simplest and most useful advice for other wheelchair users trying to figure out their spasticity. “As I’ve aged, I found that I need to take the time to take care of myself,” he says. “I tell people with newer injuries to try different solutions so they can be more self-aware regarding what works and what’s helpful to be able to have a life.”