What do I do if I suspect that I may have an Ehlers-Danlos syndrome?

1. Write down information that your primary care provider (PCP) will need to know:

Symptoms: When did they begin? Does anything make them worse or better? Include energy level, how you’re sleeping, how your function is affected such as working, household chores, yard work, exercise, showering, cooking, dressing, taking care of pets or kids.

Medications: What have you tried and did they help or have any side effects? Include supplements, over the counter medications, topical medications, prescription medications.

Treatments: Have you tried ice, heat, acupuncture, massage, trigger point, dry needling, physical therapy?

Testing: Have you had any blood work, MRIs, CT scans, x-rays, echocardiograms, bone density? What were the results?

Allergies: Have you had any reactions to medications in the past? Which meds and what happened? Any other allergies?

2. Bring a printed copy of a recent article explaining what Ehlers-Danlos syndromes are to your appointment.

3. Write down your top one to three primary concerns. 

Physicians typically have 15 to 30 minutes to spend with you. Don’t let that cause you anxiety or disappoint you. If all of your concerns are not addressed in one appointment, then schedule another appointment. If you have lots of concerns/questions, ask for your appointment to be scheduled for the longest amount of time available - maybe 45 to 60 minutes.  

4. Write down your questions, such as:

What do you think is causing my symptoms?

What is the plan to figure out what is going on?

What is the plan to treat my symptoms/pain?

5. Write down your requests:

Can I be referred to a rheumatologist?