EDS and Comorbidities

What is a Comorbidity?

When we’re talking about the term in a medical sense, it means when an additional disease or disorder is present at the same time as another. This is important because many in the medical world are taught to look for a single underlying cause. Think to many of the episodes of the TV series House. “She has low blood pressure, elevated white blood cells, seizures, migraines….what is the one cause?” But EDS patients aren’t your run of the mill patients and we come with quite the laundry list of cormorbid conditions.

Why Is This Important?

Awareness is one of the greatest tools in your arsenal. The more we are aware of potential problems, the more we can hopefully catch them before they progress. This is also important because EDS patients can’t safely take the approach of “one core cause” when it comes to our health. We must treat each individual illness that may decide to tag along with that base diagnosis of EDS.

It is so important thatThe Ehlers-Danlos Society even has a whole Coalition of physicians dedicated to researching cormorbids! EDS is so much more than being hypermobile or flexible, it means a whole range of potential problems that we face every day throughout our lives.

Unofficial List of Comorbidities Associated with EDS

The bulk of this list is from the wonderful site Oh Twist!, though I’ve added just a few that I’ve seen within the community. Please make sure to check out their site as there’s a lot of really wonderful information there so we can support others in the Dazzle! Please keep in mind that this list is not the official list of comorbidity conditions, they are a list that has been gathered from members within the EDS community and is not meant to be used as a diagnostic criteria.

Fibromyalgia
Local Anesthetic Resistance anesthetic is either ineffective, weak, or wears off quicker than normal
Chronic fatigue, often diagnosed as CFS/ME
Chronic Pain of ALL kinds, including RSD/CRPS, arachnoiditis, neuropathies, radiculopathy, neuralgia, fibromyalgia, etc. often invisible on scans
MCAD (Mastocytosis or the newly recognized Mast Cell Activation Syndrome aka MCAS – ICD-10 code to come soon hopefully in 2014)
Fibromyscular dysplasia (deformity of the arteries, especially leading to the kidneys)
Autism Spectrum (all levels) and related conditions (OCD, ADHD, SPD)
Auditory Processing Disorders
Apraxia (loss of speech, ability to speak) and/ or selective mutism (when under stress)
Mood disorders, especially anxiety and depression (likely organic in origin and/or secondary with ASD)
Syringoma, Keretosis pilaris, Milla as well as other benign skin conditions

Thyroid issues

MS and other auto-immune disorders (RA, Sjogren’s, Lupus, Ankylosing Spondylitis, OA, more)
Arthritis of all kinds, especially early onset Oestoarthritis in the spine, neck and hands, but RA common also (really AI also)
Irritable Bowel Syndrome (IBS) & proclivity toward constipation, but with quick flips to diarrhea (likely food allergies/MCAD)
Incontinence at any age (often from occult tethered cord and/or MCAD or allergy induced)
Uterine or rectal prolapse, pelvic floor dysfunction
Frequent (seemingly idiopathic) nausea and vomiting (may be from impinged vagus nerve/MCAD/hiatal hernia/gastroparesis/Chiari)
Dysautonomia of all kinds, most notably poor temperature and BP regulation (high or low, see POTS below)
Raynaud’s phenomon (blood vessel constriction from cold, stress) pronounced “ray-noe’s”) – a form of dysautonomia
POTS (Postural Orthostatic Tachycardia Syndrome) – a subset of dysautonomia involving BP drops and syncope (fainting)
Hyperadrenergic POTS (aka HyperPOTS) – a subtype of POTS involving more variable BP and adrenaline responses
NMH (Neurally Mediated Hypotension) – another form of dysautonomia affecting BP
Livedo Reticularis (purplish/white “mottling” on skin surface from likely small capillary spasming)
Frequent joint dislocations and subluxations (partial dislocations) or being so-called “double-jointed“
Behcet’s Disease
Club foot at birth
Partial syndactyly (connected fingers or toes seen at birth)
Mitochondrial disorders and deficiencies
Kidney trouble including diabetes insipidus
Diabetes miellitus and Metabolic X syndrome
Sensory Processing Disorders
Tinnitus (ringing in the ears)
Empty Sella Syndrome (common wtih Chiari Malformation apparently too fwiw)
Insomnia (trouble falling and staying asleep, multiple causes in the EDS patient including pain and hyperadrenergia)
Sleep apnea, both obstructive airway issues and Central Nervous System (CNS) Apnea(neurologic in origin requiring a sort of breathing “pace maker”)
Cranio-cervical settling (which may cause the CNS Apnea) and attendant neuropathic issues and glaucoma
Hypotonia (unusually weak muscles despite “training”) sometimes presenting as “floppy babies”
Syncope and pre-syncope (fainting and near fainting) and unusually low BP
Dizzyness (with or without syncope)
Common Variable Immune Deficiency (CVID) of all kinds leaving us prone to frequent & worsening recurrent infections of all kinds, especially respiratory & UTI’s
Interstitial cystitis
Lymphedema and angioedema (the latter comes with MCAD triggering usually)
Lipoedema (not the same as lymphedema, also spelled “lipedema” in US) an adipose (fat) tissue disorder causing unavoidable weight gain and lipomas
Dercum’s disease (see Lipedmea above, looks a lot like that plus MCAD)
Endometriosis
PCOS and menorraghea (very heavy periods)
Tendonitis and bursitis of all kinds (aka “soft tissue rheumatism”, alt. tendinitis)
Keratoconus or thinning /”pointy” corneas that lend to astigmatism
Fuch’s Dystrophy a cornea disease that effects the middle layer of the cornea
Uveitis (inflammation of hte uvea of the eye, common with ankylosing spondylitis)
Varicose and spider veins, often early onset, easy bruising and bleeding from same
Phlebitis
Migraines and headaches of ALL kinds and durations, (often driven by hydrocephalus from MCAD)
Food and drug allergies and sensitivities with a lot of paradoxic and unexpected super sensitive reactions
Bleeding disorders including Von Willebrand’s
Strokes
Mitral valve prolapse
Aneurysms of all kinds, anywhere
Easy bruising often from no apparent cause or injury
GERD (weak hiatal sphincters and MCAD can contribute here – the stomach produces acid in resopnse to histamine from food reactions)
Gastroparesis (slow or no stomach emptying) and dysmotility (poor digestive movement) beyond just constipation and IBS, possibly from impinged nerves & vessels
Idiopathic postprandial syndrome and/ or “Adrenergic hormonal postprandial Syndrome” (sort of “pseudo-hypglycemia” in absence of low blood sugar measures)
Chiari malformation, including occult (hidden) Chiari aka “Chiari Zero” formation (“saggy” hind brain, often protruding through the back skull, but not always)
Tethered cord
Syringomyelia or “syrinx formation” in the spinal cord (may be caused by long term hydrocephalus)
Spondylolysthesis, spondylolisis (misalignment of the spinal vertebrae in various directions – front -to-back, side-to-side)
Cranial cervical instability, esp C1-C2 “owl turns” and “bobble-head” issues (trouble keeping head on neck, literally, with resulting neurologic issues)
Thoracic outlet syndrome, brachial outlet syndrome
Seizure disorders and epilepsy
Fallen arches (pes planus)
Sciatica
Bilateral hip dysplasia (ability to “pop” – aka sublux – hips out and back in easily, which should be avoided!)
Cerebral Spinal Fluid (CSF) leaks including CSF rhinorrhea, CSF otorrhea (CSF leaks out nose and ears) or anywhere along the dura (lining of spinal column & brain)
Celiac disease and all forms of gluten sensitivity
Malabsorption and malnutrition and nutritional deficiencies despite diet and even supplementation sometimes. (Poor absorbption).
Electrolyte imbalances (often low potassium)
Osteopoenia (low bone density) and osteoporosis (brittle bones), often early onset
Scoliosis (deformity of spinal curve) of all kinds including kyphosis (aka “roundback”, forward bent spine)
Hiatal hernia (stomach to esophagus sphincter) and all other forms of hernias just about anywhere (inguinal, duodenal, abdominal, etc.)
Costochondritis (pain at front rib attachment point to sternum)
Chondromalacia (cartilage loss) of all kinds, especially patellae (loss of cartilage in the knees, but can occur elsewhere, e.g. hips)
Frozen shoulder
Geographic Tongue
Petechiae (dark purplish spots, essentially flat blood blisters under the skin, common in those with MCAD with high heparin levels)
Metal and other environmental allergies, especially nickel sensitivity (ELISA testing often helpful, pre-test all implant materials)
Diastasis recti, (splitting of abdominal wall along the midline) even in males and unpregnant females
Striae aka “stretch marks” even in males and young (prepubescent) females (i.e. not always associated with pregnancy!)
Myopia (often severe), macular degeneration, astigmatism, keratoconus
Strabismus (crossed eyes) or wandering eyes from likely weak eye ligaments
Bruxism (jaw clenching, tooth grinding)
TMJ pain and issues, subluxations and dislocations (Temporo-mandibular joint syndrome, jaw alignment trouble)
Restless Leg Syndrome (RLS) and leg cramps (often eased by increased magnesium)
Neuromas in the feet
Plantar Fasciitis
Chronically low Vitamin D and B12 levels (caution urged for those with MTHFR mutations with the latter, may need a different form of Vit B)
Weak or crowded teeth, many need early or partial dentures
Receding gums
Urticaria (hives) and Urticaria Pigmentosa (persistant hive-like patches, part of MCAD above)
Hair loss early, and even in women, especially those with signs of MCAD or iron imbalances
Deviated septum (misaligned nasal cartilage)
Trouble swallowing & choking issues, often neuropathic in origin from CCI, sometimes due to floppy laryngial tissues
Esophageal spasms (can extend to anywhere along GI tract also)
Skin tears or rips, trouble suturing, would dehiscence (trouble healing post surgery, especially soft inner tissues)
Liver problems, including fatty liver and lesions, enlarged liver
Enlarged gallbladder & spleen, appendicitis (may be MCAD driven)
Vocal cord dysfunction
Hearing loss from a variety of causes, some bio-mechanical, others neurologic
Diverticulitis and diverticulosis
Breast Ptosis (sagging, droopy breasts)
Crohn’s and colitis
Leaky gut syndrome
Retinal detachment and tears (rips)
Dry eyes and blepharitis (bacterial eyelid infections), as well as retinal tears and more
A perpetual case of dishes – seriously. From having to cook only whole, unprocessed organic foods you tolerate right? (Mine are all consuming anyway…)