Sascha Gallardo - August 21, 2023
For some people, taking a shower, feeling the wind on their skin, or their clothes brushing their legs can bring excruciating pain.
It’s as though they bear an exposed wound, where even the simplest pleasures we cherish, like a refreshing shower, turn into sources of relentless pain.
Affecting approximately 200,000 individuals in the United States every year [1], Complex Regional Pain Syndrome (CRPS) is a debilitating chronic pain condition which may involve exceptional inflammation and nerve dysfunction. For most patients, their journey begins after an injury to their extremities, such as an ankle sprain or a fracture. For others, it was triggered by a stroke, a surgical procedure, or a heart attack.
The symptoms encompass a variety of excruciating sensations. The affected limb can become a battlefield of pins and needles, intense burning, and searing shooting pain, leaving the patient in a constant state of distress. Even gentle stimuli can transform into triggers for misery.
CRPS also has the ability to spread beyond the initial injury site, causing pain and discomfort in other areas of the body, often affecting distant limbs or regions seemingly unrelated to the original trauma.
As CRPS progresses, the skin over the affected area may undergo transformations, displaying changes in texture, temperature, and color. Muscle weakness and movement difficulties further complicate daily life, reducing the patient’s ability to engage in once-familiar activities.
The treatment and management of CRPS pose yet another challenge, considering its unpredictable nature and the varying responses to therapies. Combining a multidisciplinary approach, involving pain management specialists, physical therapists, and mental health professionals usually helps patients regain control over their lives.
Each patient’s journey is unique. Some might encounter a milder manifestation of the condition, while others endure a persistent and severe struggle. The unpredictability extends to recovery as well, as some patients manage to find relief while others have to endure the unyielding grip of pain.
Timely detection of CRPS is crucial for a better prognosis, however, diagnosis often proves to be a challenge. As a result, many patients receive the sad news too late to achieve a complete recovery. This can have a tremendous impact on the patient’s and the family’s daily life.
How CRPS pain affects the patient
The relentless pain from CRPS casts a burdensome shadow over a patient’s life. Coping with constant pain leaves individuals in a state of distress, consuming their physical and emotional well-being. The pain disrupts sleep patterns, robbing them of restorative rest. This can lead to fatigue and further exacerbate the challenges of managing the condition.
CRPS pain not only hampers mobility but can also hinder the ability to engage in routine activities that others often take for granted. Simple tasks like walking, using their hands, or even dressing themselves can become challenging for patients. The limitations imposed by pain often lead to reduced independence, forcing individuals to rely on others for assistance, sometimes even with basic daily tasks. This can be a significant blow to their sense of self-reliance.
The mental and emotional toll of unrelenting pain can equally be formidable. Constantly battling pain and grappling with the uncertainty of the condition’s progression can lead to feelings of anxiety and depression. CRPS patients may also experience a profound sense of loss as their pain impinges on their ability to participate in activities they once enjoyed. And these represent only a few of the impacts caused by the pain itself. The complexities of pain management can give rise to an additional set of challenges for the patient.
Interruptions on the patient’s daily life
Living with CRPS can significantly disrupt a patient’s daily life. The constant need to allocate time for doctor’s appointments, therapy sessions, and treatments can be both physically and mentally taxing. Juggling these commitments with regular daily responsibilities such as work, school, household chores, or caring for family members, can become overwhelming. Moreover, adhering to medication schedules and coping with the side effects can further complicate the daily routine, leaving little room for spontaneity or flexibility.
Beyond medical interventions, implementing other pain management techniques becomes necessary for CRPS patients to cope with their condition. Adopting a non-inflammatory diet can involve careful meal planning and restriction of certain food groups, adding another layer of complexity to their already demanding lives. Depending on the severity of their condition, some individuals might require wheelchairs or crutches, which can impact their sense of independence and mobility.
In addition to dietary and mobility adjustments, CRPS patients often find themselves needing to avoid certain types of clothing and footwear that might exacerbate their pain or sensitivity. Additionally, crowded places can be overwhelming for those with CRPS, as there is a high chance of someone bumping into them and triggering pain . The cumulative effect of all these adjustments and restrictions on daily life can be emotionally and physically draining.
Financial impact
The financial burden of CRPS can be overwhelming for patients and their families. Seeking expertise from neurologists, pain management specialists, psychologists, physical therapists, occupational therapists, and other practitioners results in accumulating costs from frequent visits and various treatments.
Moreover, the extensive use of medications to alleviate pain and manage symptoms adds to the financial burden. Patients usually require a combination of painkillers, anti-inflammatory drugs, nerve medications, and other prescriptions.
Insurance challenges pose significant hurdles for CRPS patients. Treatments and medications may not be fully covered, resulting in hefty out-of-pocket expenses. Additionally, limitations on therapy sessions and treatments can hinder access to optimal care. For those without insurance, the financial burden becomes even more daunting, potentially leading to delays in seeking essential medical attention, impacting CRPS management and outcomes.
Impact to the family
CRPS doesn’t solely affect the individual living with the condition. Its impact reverberates throughout the entire family. For parents, watching their children endure the pain and suffering associated with CRPS can be heart-wrenching. Witnessing their little ones grapple with pain that seems beyond their control can leave parents feeling helpless and overwhelmed.
When a parent is the one affected by CRPS, the challenges extend beyond physical discomfort. The inability to perform their usual parental duties, such as carrying their child or cleaning the house, can lead to feelings of guilt and frustration.
In such cases, the other parent often takes on additional responsibilities to compensate for the limitations imposed by CRPS. They may have to shoulder the majority of the household chores, childcare, and even financial burdens, adding to their own stress and fatigue. While the other parent’s support is crucial, this shift in dynamics can also create potential feelings of resentment.
Regrettably, the toll of CRPS can sometimes extend to the very foundation of the family itself. The immense challenges and adjustments required to manage the condition can put immense strain on a marriage or partnership. The emotional burden, financial pressures, and changes in family dynamics can test even the strongest relationships.
Navigating the impact of CRPS on the family requires open communication, empathy, and mutual support. Seeking professional help and support groups can also be beneficial in assisting both the individual with CRPS and their loved ones in coping with the challenges during this difficult journey.
Summary
Complex Regional Pain Syndrome causes tremendous burden for those affected. Coping with constant pain, ranging from pins and needles to burning sensations, impacts both the patient’s physical and emotional well-being.
Beyond the pain itself, the condition disrupts daily life, necessitating numerous doctor’s appointments, therapy sessions, and medications. The financial burden can also be overwhelming, with costs from treatments and medications piling up.
Additionally, the condition’s impact extends to the family, with parents watching their children suffer or a CRPS-affected parent struggling to fulfill their duties. The strain on the family dynamics can lead to additional challenges, emphasizing the need for empathy, support, and communication during this arduous journey.
Ben’s Friends has a free and safe online support community for patients affected by chronic pain disorders as well as their caregivers and family. Join our Life with Central Pain Syndrome Community so you can get in touch with people who truly understand what you’re going through.
Reference:
[1] Complex Regional Pain Syndrome (2023). Complex Regional Pain Syndrome - Symptoms, Causes, Treatment | NORD