Resources for Patients Who Have Pain

Resources for Patients who have pain

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

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

Referrals

Our pediatric rheumatologists recommend avoiding 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, with techniques including strengthening and stretching. Other options include transcutaneous electrical nerve stimulation (TENS), ultrasound, massage, and 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 experience pain with land-based physical therapy.
  • Occupational therapy might include desensitization techniques and sensory integration techniques.
  • Mental health counseling includes cognitive behavioral and dialectical behavior therapy, with counselors specializing in kids with chronic illness and chronic pain.
  • Multidisciplinary pediatric chronic pain clinics include the following:
  • 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.

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 three or more hours.
    • Ibuprofen (Motrin or Advil) up to every 6 hours (i.e. four times per day)
    • Naproxen sodium (Aleve)
    • Diclofenac (Voltaren) gel
  • Salonpas patches
  • Lidocaine patches

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

What is Juvenile Myositis?

Juvenile myositis, including juvenile dermatomyositis and juvenile polymyositis, is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues.

Traveling with JM

Planning a trip or vacation can be challenging, especially when you have a child with juvenile myositis. With spring break and summer break just around the corner, the pressure might be even greater. However, at Cure JM, we want to help ensure that you and your child can enjoy all the delights of a vacation with minimal stress.

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.

Cure JM supports families, patients, and the juvenile myositis research community.

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