Supporting Emotional Functioning During AMPS Treatment

Treatment for amplified musculoskeletal pain syndrome (AMPS) can be both physically and mentally challenging for patients. At CHOP’s Center for Amplified Musculoskeletal Pain Syndrome, our multidisciplinary team supports patients who have co-existing pain and mental health conditions such as anxiety and depression, which can often worsen pain symptoms and lead to challenges with sleep and nutrition.

The program’s rigorous nature often brings out multiple responses from patients that can be difficult to understand. It’s also hard to tell these responses apart (such as anxiety/other psychological issues, behavioral issues and medical needs, or some combination of these).

There is no one approach that will work for every patient, but the goal is to provide insight into some issues patients may experience within the program and to share different approaches the AMPS team may use to support children experiencing these issues.

If you feel your child is experiencing a suicidal crisis or emotional distress, dial 9-8-8 to contact the National Suicide Prevention Hotline toll-free with 24/7 access to speak to a professional.

Anxiety and AMPS

Anxiety is one of the most common psychological issues that can arise during AMPS treatment, and often patients have anxiety before treatment. Many patients experience anxiety around timed PT/OT tasks which may be associated with:

• perfectionistic tendencies (the need to succeed)
• black-and-white thinking (if I don’t beat my time, then I’ve failed), and
• catastrophic thinking (if I don’t beat my time, I’ll have to do it again and that will be the worst thing in the world and then I’ll be too tired for the next activity, and then …)

Body changes, such as those that occur during the fight-or-flight response associated with stress, anxiety or panic attacks, can also be triggered by physical activity or exercise. The symptoms of panic attacks (e.g., rapid heart rate, trouble breathing, sweating, dizziness, nausea) are also bodily changes that can occur during intense physical exercise.

For patients with a history of anxiety, the changes associated with exercise may be interpreted within the body as anxiety, and patients’ bodies may then move into a full panic attack. Many patients also misinterpret anxiety or panic attacks as asthma attacks. In such cases, patients are encouraged to inform staff of their concerns, and staff will typically contact nursing for an assessment to determine if your child is experiencing asthma or allergy symptoms before providing any medication.

It is important to note that some anxiety is helpful because it helps prompt the patient to prepare and perform; but anxiety is harmful when it becomes so high that it gets in the way.

The goal of using different strategies and techniques to deal with tasks is not to take all the anxiety away, but to decrease it so that patients can engage in activities. When a patient is overly anxious or having panic attacks, the general recommendation in the AMPS program is to continue pushing through the anxiety-provoking activity and not to avoid it.

With anxiety, avoidance is a frequently used – but unhelpful – coping strategy. Avoiding the situation in the short term relieves anxiety temporarily but makes anxiety worse in the long term. That’s why treatment of anxiety tends to focus on helping people face and cope with their anxiety rather than avoiding the situation.

By learning effective coping strategies, patients learn they can tolerate the feared situation and that their worst fears are unlikely to come true. Eventually, the patient gets used to the anxiety-provoking situation, and this type of situation no longer causes such intense anxiety.

There are a variety of strategies staff may use to help patients complete tasks when they are anxious:

1. Encourage the use of coping strategies: deep breathing between activities, breathing while completing activities, visualization, distraction (such as talking, music, games and activities, when appropriate), and cognitive strategies (taking each activity one step at a time, breaking tasks down into smaller parts, planning the best order in which to complete the tasks, going faster for the last several repetitions or parts of a task, having a mantra such as “I can do this” to repeat over and over, and remembering that they are only beating their own times and are getting stronger every day).
2. Encourage patients to take a brief walk up and down the hallway to calm down, use coping strategies they’ve learned and regroup.
3. Encourage patients not to wait too long between activities before returning to work. Long gaps between activities often build up more anxiety and negative self-talk and thinking.
4. Try to understand the patient’s concerns and thoughts and help reframe these concerns. For example:
   • Black-and-white thinking: If I don’t beat my time, then I’ve failed.
     • Reframe: If I don’t beat my time, I will focus on strategies to help me next time.
   • Catastrophic thinking: If I don’t beat my time, I’ll have to do it again and that will be the worst thing in the world and then I’ll be too tired for the next activity, and then ...
     • Reframe: It is disappointing to not meet a goal, but it is not the worst thing in the world. It just means I will try again and try out different strategies on the next attempt.

Patients who have a history of physical or sexual abuse may be particularly sensitive to AMPS program treatment due to the physically demanding and hands-on nature of treatment, as well as the tremendous emotional difficulty of the program. We strongly encourage patients with a history of abuse to discuss this with the program psychologists to ensure that treatment is supportive and not re-traumatizing.

If abuse has occurred and not previously been reported to police or child protective services, please be aware that members of the AMPS treatment team are mandated reporters and therefore we are required to report incidences of abuse to keep our patients safe.

If significant anxiety is present and interfering with a patient’s ability to engage in treatment and/or utilize coping strategies, we may request a psychiatry evaluation. Families and treatment staff are encouraged to discuss any concerns regarding patients’ psychological functioning with the AMPS Program psychologists.

Depression and AMPS

Some patients being treated for AMPS may have depressive symptoms, with symptoms emerging before or during treatment. Some of the hallmarks of depression include negative thinking, helplessness, hopelessness, low self-confidence, lethargy, tearfulness and depressed mood. Thoughts of suicide (suicidal ideation) may also arise in patients with depressed mood.

If you feel your child is experiencing a suicidal crisis or emotional distress, dial 9-8-8 to contact the National Suicide Prevention Hotline toll-free with 24/7 access to speak to a professional.

When a patient presents with suicidal ideation or staff have concerns about safety issues, a psychiatry consultation may be needed. Family members and treatment staff are encouraged to discuss any concerns with the patient’s psychologist to look deeper into these issues, modify treatment plans if appropriate, and establish appropriate safety plans as needed.

When patients present with symptoms such as negative thinking, helplessness, hopelessness and low self-confidence, they may tend to focus on what they are NOT doing well or what goals they have not reached, despite their achievements and positive feedback. In such cases, staff may ask patients to identify what they are doing well and what strategies they are using to try to help themselves. It may also be helpful to remind them that they are in control of their bodies and that they have control over getting better.

If significant depressive symptoms are interfering with a patient’s ability to engage in treatment and/or use coping strategies, a psychiatry evaluation may be indicated. In some cases, patients may need to be discharged into more intensive psychiatric treatment. Patients discharged to more intensive psychiatric care often do not need to return to the AMPS Program in the future, as treatment of psychological issues often resolves pain. However, patients who do need to return to the AMPS Program are usually re-admitted once they complete intensive psychological treatment and demonstrate readiness to fully re-engage in treatment.

Families and treatment staff are encouraged to discuss any concerns regarding patients’ psychological functioning with the AMPS program psychologists.

Sleeping and AMPS

Patients with pain often have problems sleeping. Lack of sleep increases stress and decreases coping – both of which can reinforce the cycle of pain and sleep disturbance. Despite this, we typically do not use sleep medications for patients in the AMPS Program because they are usually not effective. Many patients find they begin to sleep better during treatment because they are so physically tired after a full day of physical and occupational therapy, and their ability to cope with pain is increasing.

Promoting Healthy Nutrition

Eating regular meals and snacks keeps a child’s body strong, well-nourished and energized. We ask parents to help us ensure that their children eat healthy, regular meals and snacks while participating in the AMPS Program. Patients should not skip meals.

Eating breakfast is particularly important as it gives patients the energy to perform at their best during treatment activities. Patients – especially teens – may not typically eat breakfast for various reasons. Some feel they don’t have time, are late risers, or simply don’t eat breakfast out of habit. We ask families to make breakfast a priority for children in AMPS treatment, so they have enough fuel to get their bodies through the physical challenges of the program.

School

It is often challenging for children to commit to leaving school for several weeks to participate in AMPS treatment. For other patients, regular school attendance has been difficult or seemingly impossible. Many patients with AMPS have been able to attend school, but find it difficult to concentrate, sit in class or focus to complete work. We view the sacrifice of leaving school for AMPS treatment as an opportunity to increase your child’s function so that when they do return to school, they can more easily focus and complete school tasks.

Due to the intensity of the AMPS treatment schedule, and the emotional and physical demands of the program, time to complete schoolwork is not provided as part of our AMPS therapeutic hospital treatment program – no matter if your child is part of our Day Hospital program or inpatient at the hospital.

To best prepare for your child’s absence from school during AMPS treatment, our AMPS Social Worker will:

• Ask to complete a HIPAA (privacy) authorization form, which will give the social worker permission to contact your child’s school when your child starts the intensive program. On this form, please include the best person at your child’s school (usually the school counselor) for the social worker to contact.
• Coordinate with your child’s school to:
  • Discuss the program and recommendation for no schoolwork while in the program
  • Obtain information regarding your child’s academic, physical and social functioning
  • Provide appropriate information regarding AMPS treatment and the student’s absences
• Provide assistance with school re-entry following discharge

Although we cannot force schools to comply with our discharge recommendations, we generally find schools are willing to follow the advice of the AMPS treatment team.

These recommendations typically include, but are not limited to:

• Supplemental homebound instruction and/or after school tutoring for work missed during treatment
• Reduced course load and excusing as much of their missed work as possible
• Extended time to make up missed work as well as current work upon their return
• Extension of assignment due dates and reducing the number of quizzes/tests they need to make up
• Modifying tests they have missed by allowing them to substitute projects, essays or take-home tests
• Eliminating current homework and supplementing it with make-up homework until the student is caught up in the subject  
• Modifying tests/exams with time extensions or alternate assignments until the student is caught up

When patients are discharged from the AMPS Program, our team does not recommend any accommodations due to pain, such as those made informally or through a 504 Plan. Our goal is for patients to be fully functional at the end of the formal treatment program. This includes being able to get around their entire environment, including school, without limitations due to pain.

Some students enter AMPS treatment while on homebound instruction or Cyber School. We almost always recommend that children return to traditional school full time after the program. Attending school full time allows your child to maintain all the functional gains that have been achieved by participating in the program. Returning to school also allows your child to reconnect with friends and take part in social activities like clubs, student government, sports, and drama.

In some cases, we plan school transition days near the end of the program. School Transition Days allow Day Hospital patients to attend a day or two at school and return to the program. This allows your child to be re-introduced to school while still receiving our team’s support. Inpatients are not able to participate in school transition days.

Some patients have learning or other needs requiring academic accommodations unrelated to pain. After discharge, we encourage academic accommodations as appropriate.

During AMPS treatment, there may be recommendations for psychoeducational assessment to see if learning differences or other factors are inhibiting your child’s ability to learn. This may be recommended for several reasons, and our team will provide these recommendations on an individual basis. Evaluations for psychoeducational needs are not performed during treatment but can be coordinated with your child’s school after discharge.