Making the Decision to Seek Emergency Care

First and foremost, KEEP IT SIMPLE! It is not your job to diagnose what is wrong. If you or your caregiver think you should go to urgent care or the ER, then you should probably go.

If you call 911, you are asking for evaluation from skilled EMTs or paramedics. They will assess the situation with more knowledge and tools than you have at home and guide you in the decision to go to the ER. Calling 911 doesn’t automatically mean you will be transported to the hospital.

Many insurance providers have phone triage services. Calling this service can help you make the decision whether to seek emergency care or not.

When it doesn’t feel so clear, here are some things to consider when making the decision to call 911 or go to the ER or Urgent Care.

• Dehydration is a medical emergency and quickly improves with 1-2 liters of IV Normal Saline. Most ERs and urgent care centers are willing to provide this service. Rehydration can make all the difference in feeling better. Untreated dehydration prolongs the crash and, at worst, can lead to kidney failure and death. Signs and causes of dehydration include:
  • Decreased urine output
  • Urine is dark yellow or even brown (in severe dehydration)
  • Repeated vomiting and/or diarrhea
  • Feeling too weak to drink or chew (ice chips are not adequate hydration)
  • Increased or increasing confusion
• While a fever can be a sign of dehydration, a prolonged fever can cause dehydration.
• Many ME/CFS patients experience chest pain during a crash making it difficult to tell if it’s a cardiac event or not. Here are a few things to consider:
  • Is the chest pain different from what you usually experience?
  • Is the chest pain accompanied by shortness of breath, dizziness, or nausea?
  • Does the pain radiate from the chest to the jaw and/or arm?
  • Are you or your caregiver uncomfortable or scared?

If you answered yes to any of these, call 911, go to the nearest urgent care or ER.

• Severe allergic reactions are when you react to a food or medication that causes anaphylaxis, a severe skin rash, or severe GI upset.
• Anaphylaxis is when you have swelling of the face, mouth, or tongue that can quickly obstruct your airway. This is a medical emergency, immediately call 911!
• Whole-body skin rash, while not an emergency, can be extremely uncomfortable and can sometimes become very severe. Additionally, it can be a precursor to anaphylaxis. Seek immediate care.
• GI upset, like diarrhea and vomiting, can result in dehydration. Monitor for signs of dehydration and seek immediate care if needed.

Expectations for ER or Urgent Care Treatment

Many of you have felt misunderstood or even degraded in urgent care or emergency settings. We are working to educate providers on ME/CFS which will translate into more effective interventions within emergency care. However, this process takes time. This resource can help guide your experience and expectations by gaining insight into the purpose and role of the medical setting you are entering.

Understanding the responsibilities of paramedics and ER staff can help you establish realistic expectations on the type and level of care they can offer. The primary objective in an emergency is to identify, stabilize, and treat life-threatening situations and/or to identify conditions requiring immediate hospitalization. Fortunately, ME/CFS and related conditions are not generally acutely life-threatening. But remember, that is why you go to the ER, to rule out that there isn’t something more severe going on. If it is determined that your condition is not life-threatening or needs immediate stabilization, the ER staff may appear less attentive because they will arrange for you to complete your workup and care in a non-urgent setting to make room for more severe emergencies.

In an urgent care facility, the goal is to decide if you need to transfer to an ER or hospital, and if urgent medical attention is necessary, or if you can be triaged and followed at a later date in a non-urgent situation.

Expectations and tips

• Receiving IV fluids is an intervention that will generally help most patients with ME/CFS. Inform the staff if you have orthostatic intolerance and could benefit from IV fluids while they are assessing your urgent status. Mention any situational factors that might worsen orthostatic intolerance, such as dehydration, poor oral intake, low-grade fever, diarrhea, nausea and vomiting, dizziness, etc.
• The medical staff will also assess your neurocognitive status, monitor heart activity, check oxygen saturation, draw blood, and get a urine sample to check urgent health metrics. This is critical information that rules out major life-threatening concerns (heart attack, stroke, severe bacterial infection, etc.).
• Know that ER and urgent care staff are hesitant to give some medications while you are waiting, especially pain medications, because they might mask a severe problem and delay care, or even put your life at risk!
• Have useful information ready.
  • Include your current med list, allergies or intolerances, problem list (diagnoses) and a clear explanation of your current concerning symptoms that brought you to the ER.
  • Having a copy of the summary from your last visit with your ME/CFS provider may be instrumental in guiding and acknowledging your care needs.
• While it is not your job to educate providers, there are resources that may help inform their decision and interventions while validating your condition.
  • ER and Urgent Care Considerations in ME/CFS
  • U.S. ME/CFS Clinician Coalition Treatment Guidelines
• Plan to be there a while. In urgent care and emergency departments, the most endangered lives receive priority attention.

So, the bottom line is, if you are worried for your life and safety, go to the ER or urgent care. Understand the process, have information available to help inform the staff, be patient, and know that what you are experiencing deserves attention too.