Resources for Patients Who Have Pain

Here are some resources and recommendations for ways of addressing pain. These come from pediatric rheumatologists and other medical providers / researchers who specialize in pain management.

Websites

Apps

(free unless otherwise stated; search your App Store)

  • WebMAP Mobile – education about pain for older kids and adolescents including ways to track and help pain. Copy this address into your browser:
  • MindShift — anxiety management tool using CBT
  • Breathe, Think, Do — problem solving strategies for children
  • MyCalmBeat — Guided diaphragmatic breathing
  • Breate2Relax — breathing and muscle relaxation exercises
  • Small Talk Pain Scale
  • Pain Squad
  • Achy Penguin
  • My Pain Diary – $4.99 – chronic pain and symptom tracker

Books

  • Managing Your Child’s Chronic Pain; Tonya Palermo and Emily Law

Referrals

It is recommended by our pediatric rheumatologists to avoid pain clinics that only offer narcotics or opiates to treat pain. A pain clinic should focus on the person, not just the pain.

  • Find anxiety disorder specialists here: www.abct.org and www.adaa.org
  • Read more about the variety of options available at WebMD.
  • Read more about research on comprehensive approaches to pain here.
  • Physical therapy is highly recommended – techniques include strengthening, stretching. Other options include: transcutaneous electrical nerve stimulation (TENS), ultrasound, massage, myofascial release.
  • Talk to your physical therapist about orthotics if body positioning, mechanics or structural issues contribute to pain.
  • Aqua-therapy is great for kids who have pain with land-based physical therapy.
  • Occupational therapy might include: desensitization techniques, sensory integration techniques.
  • Mental health counseling — cognitive behavioral therapy, dialectical behavior therapy, counselors who specialize in kids with chronic illness and/or chronic pain
  • Multidisciplinary pediatric chronic pain clinics here:
    • Children’s Hospital Colorado Pain Clinic (multidisciplinary, outpatient): (720) 777-6700
    • Seattle Children’s Hospital Pain Clinic
    • Children’s Mercy Hospital in Kansas City
    • Children’s Hospital of Philadelphia
    • University of California San Francisco
    • Mayo Clinic
    • The Comfort Ability — Boston Children’s Hospital program (online and in person) for adolescents and parents to learn skills and strategies for managing chronic pain
  • Pediatric palliative care services. Do not let the word ‘palliative’ frighten you away from these services. It simply means ‘relieving pain without dealing with the cause of the condition.’ Your pediatric rheumatologist or primary care physician can help coordinate these approaches and help you manage your disease as well.

Non-prescription methods for pain management

  • Heating pads
  • Rice packs (put rice in an old sock and microwave it – not too hot!)
  • Cold therapy
  • Acupuncture
  • Dry needling
  • Massage
  • Menthol or other aromatherapy
  • Paraffin wax bath for hand pain
  • Buzzy Bee
  • ShotBlocker

Over the counter medications – use per the manufacturer’s instructions

  • Acetaminophen (Tylenol) up to every 4 hours (i.e. 6 times per day)
  • Non-steroidal anti-inflammatory drugs (NSAID)
    • Note: do not combine different NSAIDs
    • Note: it is safe to use both an NSAID and acetaminophen because they work differently – alternate the medications every 3 or more hours
    • Ibuprofen (Motrin or Advil) up to every 6 hours (i.e. 4 times per day)
    • Naproxen sodium (Aleve)
    • Diclofenac (Voltaren) gel
  • Salonpas patches
  • Lidocaine patches
Doctor and young juvenile myositis patient.

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