This means that statistically there is a good chance that you have been misdiagnosed.
“No other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos Syndrome “
Professor Rodney Grahame, October 2014 (EDS UK 2014 conference)
Do you or your family members have any of these?
FAMILY HISTORY IS VERY IMPORTANT AS IT IS A GENETIC ILLNESS
and because many symptoms do not manifest until later in life (so if an older relative has a related history it can be significant to YOUR diagnosis).
Migraines, motion sickness, allergies, hay fever, asthma, excema, varicose veins, Irritable Bowel Syndrome, GERD/gastric reflux, nausea, gastroparesis (GP), hernias, diverticulitis, bendy joints or joint jhypermobility
(NB – joint hypermobility is not essential – many with EDS are rather stiff in the joints and muscles it now seems)
soft skin, easy bruising and bleeding, frequent nosebleeds, slow wound healing, thin translucent skin that you can see the veins through, unusual scarring especially on the lower legs.
Unusual stretch marks.
PEM – post-exertional malaise, Dyscognition or “brain fog” ….which may be episodic.
Positive Gorlin’s sign (ability to touch your nose with your tongue – see top two rows of these pics http://www.bing.com/images/search?q=Gorlin’s+sign&qpvt=Gorlin%27s+sign&FORM=IGRE)
Frequent ear infections and sore throats.
TMJ (Tempero-Mandibular Joint dysfunction – i.e. a sore jaw that hurts to chew, speak or open your mouth),
RSIs (Repetition Strain Injuries)
Scoliosis, kyphosis, pectus scavatum, Pectus Carinatum, Kyphoscoliosis
Vascular and cardiac issues like aneurysms and mitral valve problems (MVP)
Intolerance of heat and cold (possibly due to circulation issues or low blood volume)
Insomnia and unrefreshing sleep.
Gastroparesis, anorexia nervosa, Coeliac Disease
IBS (Irritable Bowel Syndrome….possibly due to an over-stretchy gut? ) – this can manifest as constipation, diahorrea or both alternating.
Rheumatoid Arthritis, Hashimoto’s Thyroiditis are also often associated with EDS.
Also POTS/OI (Orthostatic Intolerance and Postural Orthostatic Tachycardic Syndrome which may manifest as fainting, dizziness, heat and alcohol intolerance etc.
Fatigue conditions and FM/ME/cfs of course – the “fatigue” can be severely debilitating and may get worse as you get older.
Overcrowding of teeth (orthodontic work needed), periodontitis and weak, crumbly teeth.
Unstable joints/proneness to sprains, dislocations, subluxations and hyperextension. Stiff joints and muscles, joints that click, early onset of osteoarthritis, chronic degenerative joint disease, muscle pain, frequent tearing of tendons or muscles.
Reynaud’s phenomenon, Dupuytren’s contracture, carpal tunnel syndrome,
Costochondriatis (a sharp strong chest pain, muscular in origin http://en.wikipedia.org/wiki/Costochondritis), neuropathies.
Nearsightedness is common but so are other eye problems like intermittent blurry vision, blue sclera, droopy eyelids.
EDS is also associated with pregnancy complications such as post-partum haemorrhage and miscarriages.
Photophobia – sensitivity to light
Hyperacousia – sensitivity to noise
Heightened sense of smell ( these 3 likely due to the effects of excess adrenaline secretion)
Symptoms often get worse after meals (post-prandial exacerbation of symptoms) – likely because of the diversion of blood to the digestive tract after meals – leaving less available for other functions.
Chiari Malformation, Tethered Cord, Occult Tethered Cord, CCSVI
Ganglion cysts – rounded hard lumps eg on the wrists.
Petechiae (tiny red dots of blood just under the skin that appear for no apparent reason due to capillary fragility).
Piezogenic papules – small fatty raised nodules on the inside of the heels http://www.bing.com/images/search?q=piezogenic+pedal+papules+pictures&qpvt=piezogenic+pedal+papules+pictures&FORM=IGRE)
Skin tags (Acrochordon) small longish pedicles of skin overgrowth on various parts of the body, esp the armpits; the wiki description is good but not their pic http://en.wikipedia.org/wiki/Acrochordon)
Keratosis pilaris (small pimply red rash on upper arms that comes and goes http://www.bing.com/search?q=keratosis%20pilaris%20pictures&PQ=keratosis%20pilaris&SP=3&QS=AS&SK=AS2&sc=8-26&form=AARBSS&pc=MAAR)
A youthful facial appearance (few wrinkles) is common in EDS…. however it sometimes goes with an aged appearance to the back of hands and Acrogeria – http://en.wikipedia.org/wiki/Acrogeria
YOU do NOT need to have ALL these symptoms to have EDS and few will have them all but your family members may have some and you will have some others.
Likewise anyone researching the anti- aging field may want to study Ehlers-Danlos veins and genes as most of us often FEEL 20 years older than we are much of the time for some reason so our bodies may have the answer to why people have less energy as they get older…..just a thought.
NB The symptom list is so diverse as EDS is a connective tissue disease (CTD) and Connective tissue is nearly everywhere in the body.
Note that symptoms vary form person to person, even within the same family.
Other possible symptoms –
“Also as your brother may delight in showing off – the easy ability to evert the upper eyelid can also indicate EDS – my brothers loved doing that and would sit like that and stare at you for ages. This Is called Metenier’s Sign.”