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Navigating Conflicting Treatment Approaches for Amplified Musculoskeletal Pain Syndrome (AMPS) in a Teenager

3/28/2025, 2:20:29 AMMale25-34

I seek insight on a challenging situation involving my 17-year-old daughter, who has been significantly affected by health problems. Sorry for the lengthy message; I want to provide ample context. After enduring her second flare-up in January, my daughter was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS, sometimes referred to as juvenile fibromyalgia) by her rheumatologist, who is confident in this diagnosis. Recent evaluations at the pediatric pain clinics of Boston Children’s and Cleveland Children’s hospitals have corroborated this assessment as part of her admission process to their intensive care programs. One physician involved in her care is a pain management specialist and physiatrist. This doctor has proposed that my daughter is experiencing symptoms related to depressive sub-catatonia, suggesting that her anxiety and fear are primary contributors to her pain. While this viewpoint has merit and resonates with some observations we've made, the treatment plan he laid out—including Lexapro (20 mg), Lamictal (100 mg), and Wellbutrin (150 mg)—has not yielded any improvement in the past eight weeks. Instead, she is encountering side effects, particularly from Wellbutrin, which is unfortunate considering she previously saw some benefits from lower doses of Lexapro and Lamictal over a two-month period. Her diagnosing rheumatologist contends that no medication will provide a lasting solution for her condition and emphasizes that functional restoration is essential, a sentiment echoed by the teams in Cleveland and Boston. In contrast, her neurologist suggested a medical marijuana approach with a high CBD to low THC ratio—a treatment that the pain specialist vehemently opposes. This conflict has left us wondering about the best path forward. Should we consult another physician to harmonize these differing opinions? The pain specialist is advocating for persistence with the current regimen, proposing an increase in dosages (Lexapro to 30 mg and Lamictal to 300 mg). Meanwhile, the clinics in Cleveland and Boston maintain that her AMPS diagnosis should be addressed with functional treatments, although it may take time to enter those programs due to insurance and waitlist constraints. He has, however, consented to taper down the Wellbutrin to mitigate its side effects, and we're also considering reducing the other medications since there hasn't been any noticeable progress. Entering the inpatient programs at either Cleveland or Boston appears to be our next best option. Yet, uncertainty looms over whether to maintain her current medications or fully commit to a functional treatment approach. From our family’s perspective—my daughter’s, my wife’s, and my own—there has been a stable improvement in her mood since reducing the doses of Lexapro and Lamictal, while the augmentations, particularly with Wellbutrin, have been ineffective. Additionally, the pain specialist prescribed propranolol to alleviate acute anxiety episodes, which she uses monthly. Still, we believe there may be other medications that could effectively address her non-functional state, warranting exploration. Overall, we think it’s reasonable to trial antidepressants for eight weeks; if there’s no observable change, it may be time to pursue alternative therapies. Does this approach seem logical? How much time should we allow before reassessing? Historically, my daughter has been exceptionally bright and was actively engaged in life until January 11. Up until then, she functioned normally, notwithstanding her complaints of escalating pain and depression over the last two to three years, which lacked a clear diagnosis until her recent rheumatology visit. Her blood tests show nearly normal results, although she was diagnosed with PCOS earlier this year. Thank you in advance for any guidance you can offer!

ArthritisLupusRheumatology

Answers (1)

Cony

3/28/2025, 2:20:47 AM

OpenHealth AI

Main Points: Navigating conflicting treatment approaches for your daughter's Amplified Musculoskeletal Pain Syndrome (AMPS) can be challenging. Given the varied opinions among specialists, a structured approach focusing on her needs and experiences may help clarify the best path forward.

Explanation: Amplified Musculoskeletal Pain Syndrome (AMPS) can be complex and often requires a multifaceted treatment strategy. The conflicting perspectives from her rheumatologist, pain specialist, and neurologist underscore the need for a comprehensive approach that addresses both physical and psychological aspects of her health. It’s understandable that with medications showing limited efficacy and side effects causing concern, you seek a clearer path.

Your daughter's positive mood improvement upon reducing dosages suggests that lowering her medication might also lead to better overall functioning. It’s important to balance medication management with functional restoration, as healing often involves both aspects.

Next Steps:

  1. Reassess Current Medications:

    • Since you’ve noticed stable improvement in her mood after reducing Lexapro and Lamictal, consider discussing with her current physicians the possibility of further tapering these medications, especially if they haven't significantly improved her symptoms over the past eight weeks. Emphasize her experience with side effects from Wellbutrin and lack of positive response.
  2. Focus on Functional Restoration:

    • Engage actively with Cleveland or Boston's pediatric pain clinics as they emphasize addressing AMPS through functional treatment programs. While waiting for admission, research supportive therapies such as physical therapy, cognitive behavioral therapy (CBT), or occupational therapy, which may provide immediate benefits.
  3. Consider Psychological Support:

    • Given the pain specialist's insight into the psychological components of her condition, adding or evaluating therapy focused on managing anxiety and depression could be beneficial. Techniques like mindfulness, relaxation training, or coping strategies tailored to her experience of pain might improve her functionality.
  4. Medication Trial Timeline:

    • It’s reasonable to propose an 8-week trial period for any new medication regimen. If there is no observable improvement during this time, transition toward alternative therapies or supportive treatments may be more appropriate.
  5. Explore Alternative Options:

    • If you’re considering medical marijuana due to its potential benefits for chronic pain and anxiety, it may be worth discussing it with her healthcare providers for an informed decision, focusing on safe and regulated access.
  6. Communication:

    • Encourage open discussions among her medical team to align on a cohesive treatment strategy while also considering a multidisciplinary approach, which combines the strengths of all perspectives involved in her care.

Reassure your daughter that improvement will take time and that it’s okay to adjust her treatment based on her evolving experiences. Your family's proactive engagement in her care is a vital part of her recovery journey. If you feel the plans are still unclear, seeking a third opinion could provide additional clarity.

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