Symptomatic

1. Chapter 1. Introduction: An overview of the Ehlers-Danlos syndromes and hypermobility spectrum disorders - p. 10 2. Part I: Systemic Symptoms - p. 17 3. Section I.I: General - p. 17 4. Chapter 2. Generalized joint hypermobility and pain: When generalized joint hypermobility changes from an asset to a health concern - p. 23 5. Chapter 3. Chronic widespread pain: The holistic assessment and treatment approach in chronic widespread pain - p. 29 6. Chapter 4. Widespread pain in childhood: Hypermobile children may have multiple sources of pain - p. 37 7. Chapter 5. Myofascial pain: Myofascial knee pain in a young woman with hypermobile Ehlers-Danlos syndrome - p. 45 8. Chapter 6. Multiple unexplained symptoms: Living with multisystemic connective tissue complications in the absence of a known pathogenic gene variant - p. 51 9. Chapter 7. Itchy rash and general malaise: Multiple seemingly disparate symptoms, referable to mast cell activation syndrome (MCAS), a subtype of mast cell activation disease (MCAD) - p. 64 10. Section I.II: Fatigue - p. 66 11. Chapter 8. Fatigue: With so many concerns, pain, and increased sympathetic activity, no wonder there is fatigue - p. 69 12. Chapter 9. Brain fog: “I feel like I’ve suddenly developed attention deficit” - p. 77 13. Section I.III: Skin - p. 80 14. Chapter 10. Stretched, unsightly scars: “I wish I’d known I had EDS before having surgery” - p. 85 15. Chapter 11. Bruising and bleeding: Excessive bleeding and bruising in a patient with hypermobile EDS - p. 91 16. Chapter 12. Poor wound healing: Prolonged wound healing in a hypermobile person - p. 99 17. Chapter 13. Repeated joint dislocation and bruising: Ehlers-Danlos syndrome and hypermobility spectrum disorder can mimic nonaccidental trauma (NAT) - p. 105 18. Part II: Head and Neck - p. 109 19. Section II.I: Psychological health - p. 109 20. Chapter 14. Anxiety: Worry and beyond - p. 115 21. Chapter 15. Depression: Fear and depression - p. 123 22. Chapter 16. Posttraumatic stress disorder: “I wasn’t believed!” - p. 129 23. Chapter 17. Attention difficulties: The relationship between Ehlers-Danlos syndromes/hypermobility spectrum disorders and attention difficulties, “brain fog,” and attention-deficit hyperactivity disorder (ADHD) - p. 135 24. Chapter 18. Loneliness and social isolation: Physical symptoms leading to the erosion of a support network - p. 145 25. Section II.II: Head and neck - p. 149 26. Chapter 19. Postural headache: Headache and nausea with upright posture due to spinal CSF leak - p. 153 27. Chapter 20. Persistent pressure headache: Persistent headache and brain fog from intracranial venous congestion due to jugular venous obstruction - p. 159 28. Chapter 21. Cough-induced headache: Cough-induced (ptussive) headache and dizziness due to Chiari malformation - p. 167 29. Chapter 22. Excruciating headache on the side of the head: “The worst headache of my life,” due to carotid dissection - p. 173 30. Chapter 23. Headache with shaking episodes and “brain fog”: Craniocervical instability with multiple symptoms of cervical medullary syndrome - p. 181 31. Chapter 24. Skull-base headache with fainting and intermittent burning limb pain: Headache, syncope, “brain fog,” tinnitus, and neck and limb pain due to atlantoaxial instability (AAI) - p. 191 32. Chapter 25. Fainting, headache, and “bobble head”: Headache, syncope (fainting), and associated symptoms of atlantoaxial instability (AAI) and Chiari malformation - p. 199 33. Chapter 26. Pressure headache and blurry vision: Evaluation and treatment of idiopathic intracranial hypertension (IIH) - p. 207 34. Chapter 27. Head, neck, and shoulder pain: Cervicogenic headache and neck pain due to subluxation of the upper cervical spine - p. 215 35. Chapter 28. Headache with pain and stiffness in the neck: This headache is a “pain in the neck”—when muscles “try their best,” but don’t succeed - p. 223 36. Chapter 29. Migraine: Headache with nausea and light sensitivity - p. 231 37. Section II.III: Eyes - p. 236 38. Chapter 30. Difficulty reading: Convergence fatigue and reduced near vision endurance - p. 239 39. Chapter 31. Blurry and double vision: Objects appear blurry, have “ghosting” around them, or are double - p. 247 40. Section II.IV: Mouth and voice - p. 252 41. Chapter 32. Temporomandibular joint (TMJ) pain and headache: TMJ pain, clicking jaw joint, headache, and neck muscle pain - p. 255 42. Chapter 33. Gum bleeding and early tooth loss: Periodontal disease and dental implants in Ehlers-Danlos syndrome - p. 261 43. Chapter 34. Difficulty swallowing: “I find it hard to eat,” “things go down the wrong way,” “I choke on food/liquid” - p. 271 44. Chapter 35. Voice change and vocal fatigue: “I keep losing my voice.” - p. 281 45. Part III: Torso - p. 288 46. Section III.I: Upper and lower back - p. 288 47. Chapter 36. Upper back pain: Adult spinal deformity (kyphoscoliosis) - p. 293 48. Chapter 37. Low back pain: “My back is always going out”; sacroiliac joint dysfunction - p. 303 49. Chapter 38. Progressive leg weakness and urinary incontinence: I have leg weakness and numbness, low back pain, and urinary incontinence - p. 311 50. Chapter 39. Sacral and buttock pain: Unable to sit due to Tarlov cyst syndrome - p. 321 51. Section III.II: Rib cage - p. 328 52. Chapter 40. Posterior rib cage and shoulder blade pain: Posterior thoracic musculoskeletal pain - p. 331 53. Chapter 41. Chest wall pain: Anterior rib subluxation - p. 339 54. Section III.III: Lungs - p. 344 55. Chapter 42. Shortness of breath: Multiple causes of dyspnea in a woman with Ehlers-Danlos syndrome - p. 347 56. Chapter 43. Still tired after sleeping: Obstructive sleep apnea (OSA) secondary to hypermobile Ehlers-Danlos syndrome (hEDS) - p. 355 57. Section III.IV: Heart and cardiovascular system - p. 363 58. Chapter 44. Palpitations: Heart racing and feeling faint on standing - p. 367 59. Chapter 45. Feeling shaky with palpitations: Hypertension, tachycardia, dizziness, and near syncope - p. 375 60. Chapter 46. Severe abdominal pain and a cold leg: An arterial dissection or tear can mimic many other conditions in the region of the body affected - p. 381 61. Section III.V: Abdomen - p. 385 62. Chapter 47. Abdominal pain and feeding intolerance in a child: Food allergies and eosinophilic esophagitis—Culprits in a pediatric patient with suspected hEDS - p. 389 63. Chapter 48. Chronic constipation and nausea in a child: Constipation and nausea in a child with hEDS leading to severe weight loss - p. 395 64. Chapter 49. Failure to thrive in a young child: The evolution of gastrointestinal symptoms is like a “whack-a-mole” game - p. 403 65. Chapter 50. Heartburn and feeling full, even after a small meal: Gastric reflux and medical management in a person with hypermobile Ehlers-Danlos syndrome and gastroesophageal reflux disease (GERD) - p. 409 66. Chapter 51. Stomach pain and reflux failing medical management: Persistent gastroesophageal reflux requiring surgical intervention - p. 415 67. Chapter 52. Sluggish stomach: Upper gastrointestinal symptoms of fullness after eating, epigastric pain, nausea, and vomiting due to delayed gastric emptying - p. 421 68. Chapter 53. Persistent nausea: Constant, daily, and unrelenting nausea with weight loss in an adolescent - p. 429 69. Chapter 54. Constipation: Hard stools associated with incomplete evacuation - p. 437 70. Chapter 55. Severe abdominal pain after eating, and weight loss: Severe abdominal and pelvic pain from vascular compression - p. 443 71. Chapter 56. Unrelenting stomach and midback pain, particularly when eating: Epigastric pain and nausea with eating in a person with median arcuate ligament syndrome (MALS) - p. 453 72. Section III.VI: Pelvis - p. 457 73. Chapter 57. Bladder pain with urinary frequency and urgency: Multiple urinary symptoms and bladder pain due to interstitial cystitis - p. 461 74. Chapter 58. Bulging of the bladder and vagina, with difficulty urinating: Prolapse of pelvic organs due to a weak pelvic floor, with associated urinary and rectal dysfunction - p. 469 75. Chapter 59. Rectal bulging, hemorrhoids, and difficulty emptying the bowel: Multiple lower gastrointestinal concerns related to pelvic floor collapse - p. 475 76. Part IV: Limbs - p. 479 77. Section IV.I: Movement disorders - p. 479 78. Chapter 60. Twitching: Dystonia presenting as involuntary muscle movements - p. 485 79. Chapter 61. Uncontrolled spasms triggered by exercise: An unrecognized traumatic stress disorder manifesting as abnormal and painful movement (dystonia) - p. 493 80. Section IV.II: Shoulder/upper limb - p. 498 81. Chapter 62. Neck pain and tingling in the arm and hand: Surgical management of thoracic outlet syndrome (TOS) due to compression of the brachial (nerve) plexus, worsened by reaching overhead - p. 501 82. Chapter 63. Shoulder pain and/or instability: Shoulder problems in EDS patients - p. 507 83. Chapter 64. Painful shoulder blade: Poor scapular biomechanics causing regional pain in a man with a hypermobility spectrum disorder - p. 515 84. Chapter 65. Intermittent pain and weakness in the arm and hand: Long-standing forearm and hand pain with weakness from thoracic outlet compression of the arteries, veins, and nerves: Nonsurgical management - p. 523 85. Chapter 66. Pain in the hands and reduced grip strength: Simultaneous joint laxity and myofascial shortening (tissues “too tight and too loose” at the same time) - p. 529 86. Chapter 67. Pain and weakness in the hand, wrist, and forearm: Progressive hand and forearm pain and weakness due to nerve compression near the elbow - p. 537 87. Section IV.III: Lower limb - p. 544 88. Chapter 68. Hip pain: Surgical treatment of an unstable hip: Labral and ligamentum teres reconstruction and periacetabular osteotomy (PAO) - p. 547 89. Chapter 69. Wobbly kneecap and a painful knee: Progressive knee pain and knee collapsing from an unstable kneecap and arthritis - p. 555 90. Chapter 70. Swelling and redness in both feet: Swollen and red (plethoric) lower legs and feet when standing or hot, associated with feeling faint - p. 561 91. Chapter 71. Leg swelling and pain: Leg swelling and pain while sitting or standing, associated with abdomino-pelvic venous compression diseases - p. 567 92. Chapter 72. Weakness and painful numbness in the arms and legs: Thiamine/Vitamin B1 deficiency exacerbating neurological symptoms in hypermobile Ehlers-Danlos syndrome - p. 575 93. Chapter 73. Burning pain of the feet: Pedal dysesthesia (burning sensation) in the context of small fiber neuropathy - p. 579 94. Chapter 74. Foot pain and repeated ankle sprains: Ankle instability, foot pain and joint deformities, treated by surgery - p. 585 95. Chapter 75. Painful heels, and tired and clumsy feet: Poor biomechanics in the feet causing localized pain, poor gait, and fatigue when walking - p. 591 96. Appendix. Patient resources - p. 599 97. Index - p. 609