M.E.

Recently, #MEaction asked their community how long it took to receive their diagnosis of myalgic encephalomyelitis (ME). From over 400 responses from across the globe, the average time from their sample of responses was over 8 years to get a diagnosis.

I’m sure this didn’t surprise anyone in our community. I remember the frustration I felt going from doctor to doctor to doctor. Then 5 years later, I finally got a diagnosis from a doctor whose wife also had #MECFS . A year later I also got a Fibromyalgia diagnosis from a different doctor. And, in 2021, I was diagnosed with an aggressive form of a rare cancer called neuroendocrine cancer. It’s been hard to deal with all three because the symptoms overlap.

How long did it take you to get a diagnosis?

#MillionsMissing 2024: Teach ME, Treat ME

Introduction:

As the clock ticks away the final moments of the year, many people eagerly anticipate the arrival of New Year's Eve festivities. However, for individuals living with CRPS (Complex Regional Pain Syndrome), the excitement of the occasion may be accompanied by concerns about managing symptoms and ensuring a comfortable and enjoyable celebration. In this comprehensive guide, we will explore practical and thoughtful strategies that someone with CRPS can employ to prepare for New Year's Eve.

Understanding CRPS:

Before diving into the preparation tips, it's crucial to have a basic understanding of CRPS. Complex Regional Pain Syndrome is a chronic condition characterized by severe, often burning pain, inflammation, and changes in skin color and temperature, typically affecting a limb. The exact cause of CRPS is not fully understood, making its management complex and individualized, but as most of us living with the condition know, stress and the unknown play a huge part in causing a flare.

1. Consultation with Healthcare Professionals:

If you think it is appropriate, begin your preparations by consulting with your healthcare team. Schedule an appointment with your primary care physician, pain specialist, or physical therapist to discuss your plans for New Year's Eve. Share your concerns and seek advice on managing symptoms during the festivities.

2. Medication Management:

Ensure that your medications are up-to-date and well-stocked. Discuss any adjustments with your healthcare provider, such as changes in dosage or timing to accommodate the late-night celebrations. It's also advisable to carry a small supply of pain medications with you in case of unexpected flare-ups.

3. Comfortable Attire:

Choose clothing that is not only stylish but also comfortable. By opting for loose-fitting and soft fabrics that won't irritate your skin or exacerbate CRPS symptoms. Consider the temperature of the venue and dress accordingly to prevent discomfort due to temperature sensitivity.

4. Footwear Considerations:

If CRPS affects your lower limbs, carefully choose footwear that provides support and comfort. Avoid high heels or shoes that may put additional strain on your affected limb. Orthopedic shoes or supportive inserts may be beneficial in ensuring stability and reducing pain.

5. Plan:

Familiarize yourself with the venue and plan your movements accordingly. Identify seating areas, restrooms, and quiet spaces where you can take breaks if needed. Inform your friends or family about your condition, so they can offer support and understanding throughout the celebration.

5. Hydration and Nutrition:

Staying hydrated and maintaining proper nutrition are essential for managing CRPS symptoms. Bring a water bottle to the celebration and make mindful food choices. Avoid excessive consumption of alcohol, as it can interfere with medications and potentially worsen symptoms.

7. Pacing Yourself:

Pace yourself throughout the evening to avoid overexertion. Listen to your body and take breaks when necessary. Engage in activities that bring you joy but be mindful of the potential impact on your pain levels. Balancing participation and rest can be the key to enjoying a celebration without triggering a flare-up.

8. Temperature Regulation:

CRPS often involves temperature sensitivity, so be prepared for various weather conditions. Dress in layers to easily adjust to changes in temperature. If you're celebrating outdoors, bring a blanket or shawl to stay warm, or use a cooling device if the environment is too hot.

Mindful Stress Management:

New Year's Eve can be emotionally charged, and stress can exacerbate CRPS symptoms. Incorporate stress-reducing activities into your preparation, such as deep breathing exercises, meditation, or listening to calming music. Inform your close friends or family members about your needs and ask for their support in managing stressors.

10. Accessibility Considerations:

Confirm that the venue is accessible and inquire about accommodations if needed. Some venues may offer seating options, ramps, or other accessibility features that can enhance your overall experience. Advocate for your needs and communicate with event organizers if necessary.

Conclusion:

By taking a thoughtful and proactive approach, individuals with CRPS can navigate New Year's Eve celebrations with greater comfort and enjoyment. Consultation with healthcare professionals, strategic planning, and open communication with friends and family are key elements in ensuring a positive experience. Remember that every individual's experience with CRPS is unique, so tailor these suggestions to align with your specific needs and preferences. With careful preparation and a supportive network, you can welcome the new year with a sense of joy and fulfilment despite the challenges posed by CRPS.

Lastly, on behalf of Billy and I, here is a pain free New Years Eve and a pain free 2024!

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