Spasticity is an individual, sensory-motor experience that is correlated with nonmotor symptoms of pain, fatigue, and dysesthesia. Patients and clinicians may have different understandings of spasticity. This discrepancy is complicated because spasticity is highly variable depending on the individual and the unique stressors in their environment. Listening to how patients explain their symptoms and what factors make their spasticity better or worse is key to effective symptom management. Good patient-clinician communication leads to applying the correct treatment of each symptom. The use of oral medications, physical therapy, botulinum toxins, intrathecal baclofen therapy, and adjunctive therapies are reported through patient experience.
Key points
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Spasticity varies significantly based on injury type and severity, alongside how upper motor neuron disease interacts with environmental factors to influence symptom intensity.
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Spasticity occurs in a symptom cluster along with pain, fatigue, and dysesthesia (unpleasant sensations). Patients may have difficulty distinguishing spasticity from other symptoms in the cluster.
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Spasticity profoundly impacts quality of life; patients often feel misunderstood regarding their symptoms and describe it as though spasticity is a constant battle.
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Since spasticity is a subjective experience, clinicians must use clarifying questions to bridge communication gaps, ensuring patient-reported symptoms are accurately interpreted for effective management.
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Practice recommendations include assessing nonmotor symptoms concurrently with spasticity and involving patients and their caregivers in shared decision-making regarding a treatment plan.
Abbreviation
| TBI | traumatic brain injury |
Introduction
Spasticity, a complex sequela after a neurogenic illness and injury, is a life-altering condition for individuals who experience it. If untreated or undertreated, it can lead to insomnia, contractures, and an increase in caregiver burden. , Spasticity affects patients with an upper motor neuron disease, such as spinal cord injury, traumatic brain injury (TBI), multiple sclerosis, and cerebral palsy. The prevalence of spasticity depends on the type and severity of the underlying disorder. Among patients with spinal cord injuries, investigators have reported prevalence between 28% and 82%, ,,,,,, depending on the level of the injury. Approximately 50% of patients with TBI report experiencing spasticity. The prevalence of spasticity after a stroke is highly variable, with estimates between 13% and 66%. ,,, In neurodegenerative diseases, such as multiple sclerosis, the prevalence of spasticity is 50% to 100%. ,, Finally, nearly all patients with cerebral palsy, a congenital condition, report symptoms of spasticity.
According to Newsome and colleagues, patients experiencing spasticity reported that managing symptoms (46%) was nearly as important as slowing disease progression (54%). Effective spasticity symptom management requires understanding the patients’ experience of spasticity and the language they use to describe their lived experience. If the clinician’s terminology differs from the patient’s, it can lead to misunderstandings in the care plan and dissatisfaction with the care, potentially resulting in negative outcomes. The gap between the clinician’s and patient’s understanding has been documented. Spasticity is both an objective (neurogenic muscle tightness) and subjective (sensory perceptions and pain) condition. Input from patients and their caregivers is essential to capture the subjective experiences. Most clinicians assess their patients after listening to their feedback about spasticity and performing a physical examination. Self-reported spasm frequency correlates more closely with reported pain levels than with clinician-rated measures, such as the Modified Ashworth Scale or Tardieu scale.
Spasticity, a lived experience
The experiences of spasticity are highly variable. It is influenced by demographic characteristics, underlying disease processes, temperature, stress, and noise. , Therefore, understanding the contextual information of an individual is paramount to developing an effective care plan. The literature suggests that clinicians’ reports often do not align with their patients’ experiences. This could occur for many reasons. Most clinicians examine and evaluate their patients from a chief medical complaint perspective, while patients bring in their whole-body perspective and its impact on their quality of life. , Additionally, patients’ understanding of spasticity may differ from the clinician’s. , They may describe their experiences as an analogy or use words that clinicians would not use to describe spasticity or its symptoms. Furthermore, spasticity assessment tools such as the Modified Ashworth Scale, which capture only an objective aspect of spasticity experiences, do not allow for the patient’s input, , thereby compromising shared decision-making. Spasticity may be present with other chronic symptoms, leading to confusion and making the management of this condition challenging.
Lexicon commonly used by patients experiencing spasticity
Most people with spasticity indicate that they did not fully understand the word spasticity before experiencing it. Many had some notion of spasticity but could not clearly articulate this understanding. , This ambiguity stems from many sources. First, there is a discrepancy in the vocabulary and understanding of the spasticity experience. Patients may think of spasticity as neurogenic tight muscles and term it as tone . Others believe that clonus is spasticity. Still others believe that spasticity means both neurogenic tight muscles (tone) and clonic activity. ,
The experience of spasticity varies greatly among individuals. Some perceive it as neurogenic muscle tightness; others feel pain with or without sensory triggers, and a few experience tremors or jerks. Understanding of spasticity differs from person to person. For some, it is a disruption of muscle tone, seen as excessive muscle tightness; others view it as spasms or uncontrollable movements, while some see it as existing on a spectrum where tightness progresses to uncontrollable shakes and jerks ( Table 1 ) ,, Most patients describe their spasticity using analogies or metaphors ( Table 2 ), ,,, whereas others describe sensations similar to pain or discomfort ( Table 3 ). ,,, These metaphors offer insight into their complex journey, where ordinary words often fail to fully capture their experiences. The common themes in these metaphors reflect sensations of muscle tightness, inflexibility, uncontrollable muscle movements, immobility, and discomfort. Many metaphors depict spasticity as being akin to a fight or war. Patients often describe it as an outside force, separate from their sense of self, yet still part of their reality and existence. , Additionally, cultural and linguistic differences can pose challenges in symptom expression, which may lead to disengagement from health care and missed opportunities for providers to improve care and quality of life.
Table 1
Spasticity is described as either neurogenic muscle tightness (tone) or spasm (clonus)
Adapted from Bhimani et al, 2012; Bhimani et al, 2014; Jacinto et al, 2022; Kerstens et al, 2020.
| Tone | Clonus | Both Tone and Clonus |
|---|---|---|
| Inflexible | Spasm | Flexion and cramping |
| Rigid | Twitches | Tight muscles trembles |
| Stiffness | Tremors | Muscles shaking |
| Dead | Bounce | Tight and bubbly |
| Contracted | Jumpy | Stiffness and trembling |
Table 2
Use of analogy and metaphors
Adapted from Bhimani et al, 2012; Bhimani et al, 2014; Jacinto et al, 2020; Ozkan et al, 2022.
| Analogies | Metaphors |
|---|---|
| Like a wooden stick | Charlie Hoarse |
| Looks like a seizure | Stiff as a board |
| Like a startle reflex | Herky/jerky motion |
| Like a rubber band | Locked up |
Table 3
Common lexicon for nonmotor symptoms described by spastic patients
Adapted from Bhimani et al, 2012; Bhimani et al, 2016; Bhimani et al, 2023; Kersten et al, 2021.
| Pain | Fatigue | Unpleasant Sensation |
|---|---|---|
| Ache | Tiredness | Electrical charge |
| Overworked legs | Exhaustion | Itching sensation |
| Sore | Weak | Restlessness |
| Uncomfortable | Sleepy | Burning |
| Tense | Lack of energy | Numb |
| Pins and needles | Worn out | Flashing |
Variability in spasticity experiences
An individual’s experiences of spasticity are highly variable and can differ from 1 day to the next. Some patients do not experience spasticity immediately after a neurologic illness or injury. Spasticity may take days to years to emerge. In addition to an individual spasticity unpredictability on any day/time, spasticity variability has been noted between different groups of patients. Bhimani and colleagues found that men subjectively reported having more spasticity over time than women. Patients with multiple sclerosis reported much variability in their spasticity ratings, while patients with cerebral palsy reported little variability in their spasticity symptoms. In patients with spinal cord injury, spasticity ratings on average decrease over time, but persons with cerebral palsy do not see much change in their spasticity over time. Factors that influence individual spasticity are stress, changes in temperature, increased physical exertion, and noise. Noise and touch on the skin surface are bothersome because they seem to induce an increase in clonus and spasticity. , Patients often report that when they are rushed to attend an event or perform a task, their spasticity increases. , Spasticity experiences are different based on one’s biorhythm, with early risers less spastic in the morning and late sleepers more spastic in the morning. Spasticity can worsen due to secondary triggers like infections, ingrown toenails, or inflammation, with these effects being particularly pronounced in patients with spinal cord injuries.
Symptom cluster in spasticity
Spasticity is a sensory-motor phenomenon. The pathophysiology of spasticity accounts for the sensory input as the effects of sensory Ia neurons may experience increased excitability due to the lesions in the upper motor neurons of the corticospinal tracts, causing increased motor neuronal excitability and decreased descending inhibitory drive affecting proprioceptive (stretch) reflexes. , Additionally, constantly contracted muscles lead to pain and fatigue. Therefore, spasticity evaluation requires a symptom cluster perspective because symptoms are correlated and may influence each other. Common correlated symptoms are pain, fatigue, and unpleasant sensations.
Pain
Experiences of pain are often predominant in most patients seeking spasticity treatment. , Patients who experience pain with spasticity tend to use a different lexicon to describe spasticity than those who do not ( Table 4 ). Many patients articulate feelings of unease, discomfort, or pain. Some perceive this discomfort as a nuisance, while others experience pain that exceeds their tolerance, necessitating analgesics. There is a profound sense among people who experience it that this pain experience differs from headache, chronic, or neuropathic pain. Although some individuals describe their pain experiences as neuropathic or chronic, further exploration reveals that this pain is somewhat distinct from other types of pain. ,,, The descriptors used for this pain suggest that it encompasses both nociceptive and neuropathic characteristics. The nociceptive pain is due to muscle stiffness and tightness, whereas neuropathic pain is due to the involvement of sensory pain. ,, Spasticity is a personal experience that requires a multifaceted approach for effective assessment and management. The Italian Consensus Conference on Pain in Neurorehabilitation acknowledges that pain is part of a spasticity experience requiring a multidimensional approach, which includes pharmacologic or nonpharmacologic approaches.
Table 4
Spasticity lexicon is described as a painful or pure muscle-tightness experience
Adapted from Bhimani et al, 2012; Bhimani et al, 2014; Jacinto et al, 2022; Kerstens et al, 2020.
| Spasticity (Muscle-Tightness Only) | Spasticity (Painful Experience) |
|---|---|
| Heaviness | Soreness |
| Swelling | Pulling sensation |
| Stiffer | Pressure |
| Tight | Muscles don’t relax |
| Flexed | Walking barefoot on concrete |
Since spasticity is an unfamiliar experience, some patients may substitute the lexicon of pain when describing spasticity, which can lead a clinician to prescribe an analgesic. The pain experienced in spasticity is a quality-of-life issue because it affects sleep, causes psychological distress, and demotivates the pursuit of normal activities. ,,,, Van Lith and colleagues identified pain as a significant nonmotor symptom, with 72% experiencing leg or back pain, often described as nerve pain or cramps, which affected their life activities. According to Flanigan and colleagues, self-reported spasm frequency correlated better with reported pain levels than clinician-rated measures, such as the Modified Ashworth Scale or Tardieu scale; therefore, it is critical to obtain patients’ experiences of pain when evaluating spasticity.
Fatigue
The symptom of fatigue is often described as tiredness and malaise by people with spasticity. Fatigue is one of the main reasons cited for gross motor decline and changes in spasticity/dystonia. , The relationship of fatigue with spasticity in patients after stroke is pronounced, but fatigue is not confined to cerebrovascular injury; rather, it has also been noted in people with underlying diagnoses of spinal cord injury and multiple sclerosis. According to Tibbett and colleagues, the top 3 symptoms for people with spinal cord injury experiencing spasticity are difficulty ambulating, fatigue, and pain. Their main emotion is frustration. Stress can play a significant role in increasing spasticity, which, in turn, leads to fatigue.
Living with spasticity is taxing. Patients often do not engage in physical activities because they have difficulty sleeping, which leads to fatigue during the day and frequent naps. , Because fatigue is a multidimensional concept, it is imperative to identify both physical and mental aspects of fatigue. Fatigue is not only due to physical exhaustion related to constant muscle tightness and stiffness, but also due to mental fatigue, which can prevent a patient from achieving full recovery during an acute rehabilitation stay. , Expression of fatigue requires careful evaluation because these complaints could be due to underlying depression. , Clarification of underlying depression is critical in addressing fatigue complaints. Fatigue and depression are reported to be inversely related to physical function.
Unpleasant Sensations
Patients with both upper and lower extremity spasticity have reported experiencing unpleasant sensations or dysesthesias . These dysesthesias disrupt sleep and physical function and are a considerable obstacle to independence and quality of life. Some describe these sensations as a feeling of electric charge running through their affected body areas, while others report having a burning and numbing sensation. ,,, Spasticity-related unpleasant sensations are particularly enhanced for people with brain injury and multiple sclerosis, owing to the brain involvement, because sensory input may be distorted, leading to intense or dull sensory experiences. ,
On a continuum of sensory experiences, a few patients report that they sense spasms internally, invisible to the naked eye. They are unable to provide any explicit or concrete words but rather express them in terms of how their senses perceive it. Some might label it as a puff sensation, while others label it as a bzzz sensation. Because their sensory experiences are difficult to describe, patients often report that their concerns are not being taken seriously by clinicians. ,,
Spasticity is associated with lesions of the central nervous system affecting upper motor neurons; however, sensory pathways can also be injured. Central sensory neurons receive neural signals from the peripheral neurons associated with touch, temperature, muscle spindles, and pain receptors. When peripheral stimuli activate these receptors, action potentials propagate to the spinal cord and synapse on central nervous system pathways, which in turn propagate action potentials to the sensory cortex in the brain. The brain interprets input from the periphery, determining the location, intensity, and modality of the stimulus. If the central neurons are injured, the interpretation of sensations is altered such that the patient experiences tingling, burning, and cold sensations. Patients with spasticity and dysesthesia may have difficulty describing and distinguishing these symptoms. It is crucial to listen to the patient to avoid overmedicating for spasticity when the unpleasant symptom the patient is experiencing is dysesthesia.
Physical functions
Activity-related impairment due to spasticity is one of the top concerns of patients who live with it. Spasticity affects motor function, disrupting physical abilities. According to Alghamdi and colleagues, 50% of people who experience spasticity due to multiple sclerosis experience impairments in activities of daily living. Stiff muscles or unpredictable muscle movements make walking, transferring, and seating in the chair or wheelchair challenging. , Lack of balance and impaired mobility are further linked to the fear of falling because patients do not feel they have control over their muscles. Most patients with lower limb spasticity are either unable to walk or require the assistance of mobility devices. It has been reported that most patients want to improve their walking and/or balance; thus, goal setting most often focuses on the lower limbs, especially the foot, as opposed to the upper limbs.
Patients often report that spasticity increases with increased physical activity. Movement of the limbs is a common reason for experiencing spasticity; however, spontaneous spasms (ie, no triggering event) were reported to be among the most common types after the movement-induced spasticity. The frequency of spasms appears to decline with age. According to Sarmiento and colleagues, about 60% of adults with cerebral palsy reported a decline in gross motor function since childhood; declines in hand function and communication also increased with age. Many patients do not receive treatment, owing to the misconceptions that only people with visible active function qualify for or deserve treatment. It is essential to remember that spasticity can mask active function, and treatment of spasticity may yield remarkable results. Additionally, some patients need spasticity to perform physical functions; if spasticity is treated aggressively, it may unmask underlying weakness, which may leave patients with the inability to perform their physical functions.
Spasticity is a barrier to performing body functions, daily activities, and participation. Patients with upper extremity spasticity often complain of the inability to perform daily hygiene and other activities of daily living. According to Lejeune and colleagues, spasticity in shoulder muscles occurs in many patients following a stroke. Shoulder spasticity can be painful and limit limb movement. If pain is managed adequately, upper extremity function also improves concurrently. Dominant arm spasticity has been correlated with social stigma because patients are often unable to perform daily tasks.
Psychological issues
Spasticity is exhibited as a symptom in the physical domain of life; therefore, treatment is usually confined to the physical domain of a person experiencing spasticity. Spasticity is an exhausting experience. Once a person has experienced spasticity, navigating the experiences is intimately linked with the cognitive appraisal of spasticity awareness, emotional experiences of symptom unpleasantness, and the cost to self for doing nothing to alleviate or manage negative consequences. Once spasticity is encountered, it becomes entrenched in daily experiences and alters patients’ sense of psychological well-being. Connecting with life in a meaningful way, with clear goals and purpose, is essential to well-being. Discomfort, pain, and impaired physical activities are intricately linked with a sense of impaired self-efficacy. Patients often report negative changes in their personalities, including a lack of self-confidence and aimlessness. With encouragement and personal connection, clinicians can empower patients’ capacity for self-efficacy and adaptation.
Patients with spasticity may also suffer from anxiety and depression due to a perceived lack of control over their bodies. Since spasticity is experienced as being locked up, many could not move their muscles at will. Spontaneous muscle jerks could be induced without much notice, a frightening experience for some patients. Symptoms of spasticity have far-reaching consequences. Patients’ sense of well-being can be compromised, leading to psychological distress. Mental anguish and suffering have made some patients question their religion and faith in God. , It is not uncommon for patients to report that spasticity experiences have altered their personality and changed their outlook on life. Therefore, it is critical to ensure that patients experiencing spasticity are concurrently treated for psychological distress through professional counseling services.
Social burden
Spasticity impairs physical functioning, which often requires caregiver assistance. Family members frequently take on caregiving roles but need education and understanding to provide proper support. Access to a caregiver is a real challenge for people with spasticity. Without proper care, performing daily activities becomes difficult. The pandemic worsened this issue due to the limited availability of paid caregivers. Individuals with spasticity often worry about balancing work and personal life. They may feel self-conscious because of motor dysfunction, which can lead to social withdrawal and strained relationships with family and friends. Many avoid going out alone out of fear of falling, resulting in social isolation. Problems with voiding and bladder spasms can also discourage patients from socializing or attending gatherings.
Social stigma, embarrassment, and isolation are the direct consequences of the physical symptom of spasticity. Because the triggers of muscle tightness and movement are unpredictable, being out in public with other people who may not understand spasticity can be a significant burden for many. Uncontrollable jerks may mimic seizures or create the impression that one has no control over one’s body. Some patients feel ashamed and isolated, as they do not want others to see them struggling in their daily activities. ,,
Standard treatments
Spasticity treatment is multidimensional and depends on the severity of symptoms, impairment in functions, and treatment goals. Physical and occupational therapies help address functional limitations, while oral medications are necessary to decrease muscle tone. Medications include baclofen, benzodiazepine, gabapentin, diazepam, clonazepam, and pregabalin; however, each comes with problematic side effects, such as drowsiness and dizziness, leading patients to choose other treatment options. Focal spasticity can be managed with oral medications and physical and occupational therapies through stretching, correcting posture, and positioning. However, multisegmental spasticity and generalized spasticity require additional treatments, such as botulinum toxin and intrathecal baclofen pump, and in some instances, phenol and cyroneurolysis. ,
Botulinum Toxin
Received every 3 months, botulinum toxin is used to address multisegment spasticity, and it has been reported to improve quality of life. , However, this treatment has many barriers, including cost and access to trained/experienced physicians. Some have reported no response or that the effects of botulinum toxin wear off before 3 months. Some patients who experience botulinum toxin wearing off do not report their symptom reemergence, and others experience significant difficulty in work life, requiring them to take time off. Reduced efficacy of botulinum toxin has been reported for multiple sclerosis patients; therefore, patient and caregiver education are paramount. Other patients do not like the idea of injections or neurotoxins. According to Cecchella and colleagues (2025), the most common reasons to discontinue botulinum toxin therapy post stroke spasticity were logistical barriers and comorbidities, respectively.
Intrathecal Baclofen Therapy
Generalized and severe spasticity requires therapy escalation to manage it effectively. Intrathecal baclofen therapy is a surgical intervention in which baclofen is delivered to the subarachnoid space to manage intractable spasticity. Most patients and their caregivers report high satisfaction with the intrathecal baclofen pump as disabling spasticity improves considerably, leading to gains in mobility, improved sleep, decreased caregiver burden, and improved bladder function. , However, before the pump is implanted, patients must understand the time commitment for pump refills and dose adjustments, the risk of infection, possible device malfunction, and intrathecal catheter failure. , They should also be aware that pump implantation, intrathecal baclofen dose titration, and subsequent physical and occupational therapies reduce spasticity, thereby reducing energy consumption, which, in turn, could lead to increased body mass, obesity, and cardiovascular risks. ,
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