How to Cope when your Diagnosis Changes: Clare's Myofascial Pain Syndrome Story

Clare and Cheryl share tips for how to cope with periods of no diagnosis or changing diagnosis. Clare also provides insights from her unique perspective as someone diagnosed with autism as an adult, soon after her myofascial pain syndrome diagnosis.

Cheryl and Clare discuss the importance of perseverance in seeking help, building a personalized treatment plan, and ways to find joy in the midst of chronic illness while accepting that it’s okay to feel sad or angry too.

The episode concludes with a discussion about how pain, brain fog, anxiety, and burnout are hard, but support is out there and can make a big difference in living well despite the challenges.

Episode at a glance:

• Journey to diagnosis of myofascial pain syndrome and autism: getting referred to a variety of specialists to troubleshoot symptoms that mimic other conditions, learning to unmask and cope with pain, brain fog, anxiety, and burnout
• Building a personalized treatment toolbox: currently incorporating pharmaceutical medication with integrative treatment. Physical therapy and exercise with gentle movement, yoga, and weight training, Cymbalta for depression and chronic pain
• Finding joy: Find a community where you can learn new things and have compassionate and caring support. Don’t forget to find joy in the “little things”, like cozy blankets or a TV show / movie / book to escape to.
• Advice for undiagnosed patients: You’re not crazy! The gray area is scary, but it won’t last forever. Keep an open mind, and know it’s okay to feel sad and angry.
• Coping with a change in diagnosis: Clare’s tips from her experience having her diagnosis changed: being open to new possibilities, advocating for yourself, and being realistic about what doctors know
• Living well despite chronic illness: Getting to a place where you’re friends with your body - not fighting against it but rather acknowledging what your body has survived.

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE,

an online course & support group program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Learn more here!

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