Preparing for Your Doctor’s Appointment: A Guide for Hypermobile Patients

If you have hypermobility or suspect it might be contributing to your symptoms, preparing for your doctor’s appointment can help you get the most out of your visit. Use this guide to organize your thoughts, describe your symptoms clearly, and advocate for proper care.

Describe Your Symptoms Clearly

When talking to your doctor, it’s important to be as specific as possible about your symptoms. Consider mentioning:

1. Cardiovascular and Autonomic Symptoms

• Orthostatic Hypotension: Feeling lightheaded or dizzy when standing up.

• Palpitations: Unusual heartbeats, fluttering, or racing heart.

• Dizziness with Position Changes or Exercise

• Syncope: Fainting or near-fainting spells.

2. Gastrointestinal Symptoms

• Gastroparesis:

  • Feeling full quickly when eating

  • Prolonged fullness after meals

  • Nausea or vomiting

  • Excessive bloating or belching

  • Upper abdominal pain

  • Heartburn

• Abdominal Discomfort:

  • Diarrhea, constipation, or both

3. Bladder Symptoms

• Neurogenic Bladder:

  • Frequent urinary tract infections (UTIs)

  • Urine leakage (incontinence)

  • Frequent urination or sudden urges

  • Difficulty emptying the bladder (urine dribbling)

4. Neurological Symptoms

• Dizziness, Balance Issues or Lightheadedness: Note if you feel faint, especially when standing up, as this could indicate dysautonomia (such as Postural Orthostatic Tachycardia Syndrome – POTS).

• Double Vision or Visual Changes

• Difficulty Speaking or Swallowing

• Numbness: Especially around the mouth, face, or other areas.

• Fainting Spells

• Severe Headaches or Vision Changes

• Postural Headaches: Worsened when standing and relieved when lying down.

• Vomiting or Pain at the Occiput (back of the head)

• Dilated Pupils or Neurological Changes

• Sudden fainting spells with Head Movement

• Severe Neck Pain

• Vertigo or Loss of Balance

• Bowel or Bladder Changes:

  • Sudden bladder retention or incontinence

  • Bowel incontinence

  • Leg weakness or numbness

  • Saddle Anesthesia or Paresthesia (numbness in the groin area)

  • Sudden sexual dysfunction

  
  

5. Skin Symptoms

• Hives or Skin Reactions: After exercise, hot baths, heat exposure, or certain foods.

• Severe Skin Hyperextensibility or Translucency

• Atrophic Scarring: Thin, papery scars.

• Unusually Soft or Velvety Skin

6. Pain and Musculoskeletal Symptoms

• Joint Pain or Instability: Explain which joints are affected, how often the pain occurs, and what makes it worse or better.

• Frequent Injuries or Dislocations: Mention any history of subluxations, dislocations, sprains, or joint locking.

• Muscle Weakness or Spasms: Describe any tightness, cramping, or weakness in your muscles.

• Frequent Fractures

7. Other Symptoms to Mention

• Fatigue: Persistent exhaustion that doesn't improve with rest.

• Sleep Disturbances: If you have difficulty sleeping, non-restorative sleep, or frequent night awakenings, bring it up.

• Anxiety, Brain Fog, or Memory Issues: If you struggle with concentration, memory, or emotional regulation, explain how these affect you.

• Hoarse Voice or Dysphonia

• Dyspnea: Difficulty breathing or a sensation of upper airway obstruction.

• Choking Sensation

• Gastrointestinal Issues: Mention bloating, constipation, reflux, or irritable bowel symptoms.

2. Explain How Symptoms Impact Your Daily Life

Doctors respond well to real-world examples. Instead of just stating that you have pain or fatigue, describe:

• Tasks you struggle with (e.g., standing for long periods, carrying groceries, writing, typing).

• Limitations at work, school, or daily activities.

• How your symptoms fluctuate—are they worse at certain times of the day or after activity?

3. Ask About Diagnostic and Management Options

If you suspect hypermobility is playing a role in your symptoms, consider asking your doctor:

• “Could my symptoms be related to hypermobility or a connective tissue disorder like Ehlers-Danlos Syndrome?”

• “Would it be helpful to see a specialist, such as a rheumatologist, geneticist, or physiotherapist?”

• “How can we manage my symptoms and prevent further joint issues?”

• “Are there any tests (e.g., blood work, imaging, autonomic function tests) that could provide more insight?”

4. Advocate for a Collaborative Approach

If you’re already working with a physiotherapist, pain specialist, or other healthcare providers, let your doctor know. A team approach is often the most effective way to manage hypermobility-related conditions.

Tips for Your Appointment

• Keep a symptom diary noting when and how often symptoms occur.

• Mention any family history of hypermobility, EDS, or similar conditions.

• Ask about referrals to specialists such as cardiologists, neurologists, gastroenterologists, or pain management specialists if necessary.

• Be open about how these symptoms impact your daily life.