CreakyJoints.org

We can all agree that things have been pretty unpredictable on Twitter lately. Please stay in touch with us here: creakyjoints.org/creakychats/

One of the lesser-known — but most serious — signs of HS is the formation of tunnels under the skin that connect lesions together. If you've experienced this, early diagnosis matters. Take the free HS symptom check today 👉 ghlf.org/hscheck/?utm_s… #HidradenitisSuppurativa #HSAwareness #SkinTunnels #ChronicIllness

Supporting someone with chronic illness isn’t about fixing them. It’s about: • Listening without minimizing • Avoiding unsolicited advice • Offering real help (not just words) • Letting them feel what they feel Support isn’t loud—it’s consistent. Learn more: creakyjoints.org/support/how-to…

• Kill overhead lights 1–2 hrs before bed (your brain needs darkness to release melatonin) • Heat your body (shower/heating pad) → reduces pain + tells your nervous system to stand down • Get the thoughts out of your head and onto paper—don’t process them in the dark • Slow your breathing (in 4, out 6–8) to bring your system out of “fight or flight” • Lying awake >20 min? Get up, low light, reset (this retrains your brain to associate bed with sleep) • Try to wake up at the same time tomorrow—even if tonight was rough Your body isn’t “failing.” It’s just stuck in overdrive. #ChronicIllness

Remember: You’re not flaky—you’re protecting your energy. Canceling plans isn’t failure—it’s self-preservation. Rest is not laziness. It’s maintenance. You don’t owe anyone an explanation for being tired again. “Pushing through” is how you end up worse. You’re not behind—you’re on a different timeline. You’re allowed to disappear to survive. Productivity is irrelevant when your body is in survival mode. The right people won’t take it personally. If they only like you when you’re “easy”… they don’t actually like you. #chronicillness

If asking for help feels hard, start small: • Be specific — “Can you help me with ___?” • Choose safe people — not everyone deserves access to your vulnerability • Set boundaries — support doesn’t mean overexposing yourself • Use tools — reminders, delivery services, telehealth, support groups • Let it be imperfect — you don’t have to explain everything to be understood Needing support doesn’t mean you’re failing. It means you’re adapting. #ChronicIllness #Spoonie #SelfAdvocacy

Healthcare cuts aren’t theoretical—they’re already impacting coverage, access, and state budgets. New episode of The Health Advocates breaks down: • Medicaid funding cuts • HHS restructuring • What it means for patients right now 🎧 #episode194" target="_blank" rel="nofollow noopener">ghlf.org/the-health-adv… #HealthPolicy #Medicaid #PatientAccess

Do you still have symptoms from Graves' disease — even with treatment? You're not alone, and your experience matters. We're looking for people living with difficult-to-treat Graves' disease to take a short poll. Your answers can help us better understand what patients like you are going through — and push for better care. We see you — and we're asking for just a few minutes of your time. Get started: research.net/r/P2ZNC3G?SV_I… #GravesDisease #ThyroidHealth #Hyperthyroidism

Living with PMR and have questions about what to expect? Join our upcoming webinar to learn about: • Treatment options • Managing symptoms & flares • Navigating daily life with PMR 📅 May 5 | ⏰ 2–3 PM ET 🔗 creakyjoints.org/pmr-webinar-re… #PMR #PolymyalgiaRheumatica #ChronicIllness

Think it's just an ingrown hair... again? If bumps keep coming back in the same spot, grow larger over time, and never fully heal — that's not typical. It could be a sign of HS. Find out if you could be at risk 👉 ghlf.org/hscheck/?utm_s… #HSAwareness #HidradenitisSuppurativa #SkinHealth #ChronicIllness #IngrownHair

Calling all myositis warriors 💙 Get a free Myositis Wellness Guide with resources to help you manage flares, support your energy, and navigate daily life. 🔗 creakyjoints.org/education/myos… #myositis #raredisease #chronicillness

COVID Antivirals: Are High-Risk Patients Missing the Window? Dr. @PopovianPharmD and @AngelaDegrassi discuss new CDC findings, @GHLForg survey data, and why high-risk patients may still be missing timely COVID treatment on a new episode of Healthcare Matters. Listen now: #episode65" target="_blank" rel="nofollow noopener">ghlf.org/healthcarematt… #COVID19 #Antivirals #PatientAccess #HealthcareMatters

POV: you had plans this weekend… but your body said no. Here’s how to say no without guilt: creakyjoints.org/living-with-ar… #chronicillness #spoonie #invisibleillness

Managing Graves’ disease isn’t always straightforward. If treatment has felt like a long road, you’re not alone. Get a free Graves’ Disease Wellness Guide with: • Day-to-day symptom tips • Nutrition support • Mental health resources • Practical strategies for daily life 🔗 creakyjoints.org/education/grav… #gravesdisease #autoimmune #chronicillness

We want to hear from you. If you’ve experienced: • Frequent painful attacks • Tophi (lumps under the skin) • Joint damage Your story can help improve care for others. ⏱️ Takes 2 minutes: surveymonkey.com/r/goutjourney #Gout #ChronicIllness #PatientVoice #Healthcare

What looks “small” to others can take everything from you. You showed up today, that counts. Give yourself some grace. No is a full sentence. Protect your energy. You’re fighting a battle others can’t see—but you feel it every day. 💜

When symptoms don't add up, could it be IgG4-RD? IgG4-related disease is a rare inflammatory condition that can mimic other illnesses—leading to delays in diagnosis. This #IgG4RDAwarenessDay, we’re working with advocacy partners to raise awareness and help more people recognize the signs earlier. Learn more: bit.ly/3NEfvjb @IFAiArthritis @KidneyFund @IgG4ward @Mission_Cure @VasculitisFound @Amgen

The 340B program was meant to support vulnerable patients. In a new episode of Healthcare Matters, @PopovianPharmD examines Minnesota’s latest transparency report and asks the key question: are patients truly benefiting? Listen now: omny.fm/shows/healthca… #340B #DrugPricing #PatientAccess #HealthcareMatters

A federal court halted sweeping changes to U.S. vaccine policy — and the implications go far beyond vaccines. In our latest episode of The Health Advocates, @StevenNewmark breaks down: • What the court actually decided • Why the ruling focused on process and scientific integrity • What this means for patients, providers, and public trust At its core, this case raises a critical question: who should shape public health policy — and how? This is one we’ll be watching closely. 🎧 Listen here: omny.fm/shows/the-heal… #HealthPolicy #Vaccines #PublicHealth #PatientAdvocacy #HealthcareLeadership #HealthAdvocates