*Disclaimer: the chronic pain I have lived with for the better part of two years is both disabling and severe. Without pharmaceutical intervention I would be bed-bound around the clock. It has taken over a year to work out the knots, but I have finally found an even balance. Although the medications help tremendously to increase my quality of life and increase my sense of freedom and mobility, I am still by conventional standards severely limited; I cannot read a book for too long, stand up, walk, or do the dishes. Despite my natural aplomb towards acts of daily living and life in general, I have developed a special evil relationship with doing the laundry and cleaning my home. The prescription narcotics which I take (as advised) have caused a suppression of my pre-botzinger complex resulting in moderate Central Sleep Apnea; during the night I oscillate between periods of normal breathing to severe dyspnea, to prolonged central apneas (however, most of the night is without episode – save for my REM cycle – and as noted below, my oxygen saturation never dips below 92%). So let it be known that although the employment of medication is a valuable asset in the clinicians and patients arsenal, time and care should always take precedence; nothing is without consequence, and prescription narcotics are far from adiaphorous.
- Tethered Cord
- Atlanto-axial instability (craniocervical instability)
- Suspected Chiari Malformation (acquired)
Problems arising from these conditions: Facial Paraesthesia(s), Lhermittes sign, intraocular pressure, partial uni-lateral facial paralysis (minor bells palsy like signs), overflow incontinence; urinary retention, bi-lateral leg weakness, migraines (starting at the base of the skull), neck pain radiating bi-laterally across both shoulders.
Cardiac and Pulmonary Problems:
- Possible MVP and Regurgitation
- Chronic cough and crepsis (left lung only).
- GERD (gasteroesophogeal reflux disease)
- Irritable bowel syndrome
- Dysphagia (paroxysmal; difficulty swallowing)
- ADHD-pi (primarily inattentive)
- Dysthymia (remission)
- Central Sleep Apnea (moderate-severe); AHI 26. Oxygen saturation >92%.
- Plantar planus (navicular depression)
- Bi-lateral inferior and superior retinaculum tears with peroneal tendon subluxation
- Bi-lateral labral tears; SLAP (shoulder)
- Bi-lateral shoulder bursitis (AC & Sub-scapular)
- Bi-lateral labral tears (hip)
- Bi-lateral rotator cuff tendinosis & tendinitis; potential bi-lateral supraspinatus and/ or teres minor/ infraspinatus tear (incomplete – dated radiological findings)
Listing my luxations (subluxation (S) & dislocation (D)):
- Knees- S
- Shoulders; sub-scapular & glenohumeral- S
- Acromio clavicular separation (R shoulder)
- Bi-lateral sternoclavicular subluxation (severely unstable)- S
- Ribs (random)- S&D
- Wrists- S
- Hips- S
- Ankles- S
- Fingers- S&D
- Neck & back (instability from C1-T1 & L1-S5)
- Sacral &coccyx instability (radiological studies to come)- S&D
- Elbows- S
- TMJ- S
Problems arising from musculoskeletal manifestation(s) of HEDS: Pain; widespread, generalized and acute, disability, instability and accompanying pain, neurological problems arising from instability in vertebrae: neuropathies and neuropathic pain syndromes.
Disorders of the Eye:
- Keratoconus (currently unilateral; had C3R operation performed in 2009 — outcome: stable)
- High Intra-ocular pressure
- Nystagmus and Strabismus
Problems associated with ocular manifestations: Difficulty reading; my R eye has the keratoconus meaning that the information taken in by the ocular nerve is interpreted first (Wernickes area located in left hemisphere (parallel processing) leading to ‘fuzzy’ reading and a delay/ lag-time before wording becomes clear (relative), pressure and pain behind R eye. The facial paraesthesias make reading difficult (they’re very distracting).
Medications I currently take to manage symptoms:
- Oxyneo BID
- Omeprazole 20mg qD
- Oxy-IR 10mg q4H/PRN
- Ibuprofen 800mg q4H/PRN
- Atenolol 25mg qD
- Concerta 72mg qAM
So this is my incomplete list of EDS signs and symptoms. I will continue to update this list when new pathologies arise or when old ones to the wayside (fingers crossed that the ratio of remission is greater than that of new presentations).