0 votes
5 views
ago in Diseases & Conditions by (560 points)
What not to do if you have EDS?

1 Answer

0 votes
ago by (1.6k points)
What you should not do if you have EDS are any high impact sports or high impact exercises, contact sports and avoid taking certain medications like fluoroquinolones and don't do any heavy lifting or have any chiropractic neck adjustments as these types of activities significantly risk joint dislocation, severe tissue damage and subluxation.

When you have EDS, you should avoid running, jumping and any aggressive jumping on trampolines and instead do low stress exercise like Pilates or swimming and avoid football, rugby, martial arts and also wrestling to prevent any sudden trauma and severe injuries.

And never stretch your body to the point of locking your joints like your knees, elbows or fingers as doing so can stress your connective tissues and avoid any high velocity spinal manipulations, especially on your neck and avoid any extreme or sudden heavy resistance, which places excessive strain on fragile ligaments and tendons.

Unless a doctor okays the medications you should avoid blind injections, blood thinners and fluoroquinolones.

Unless directed to by a doctor, you should avoid any antibiotics that are in the fluoroquinolone class like Levaquin or Ciprofloxacin as they are tied to a widely established risk of tendon and connective tissue damage.

And unless medically necessary, you should avoid anticoagulant blood thinners as EDS makes you very susceptible to severe bruising and internal bleeding and always ensure that any medical or cosmetic injections are done using ultrasound guidance to avoid improper tissue or blood vessel placement.

When you have EDS, you should also avoid alcohol and caffeine as well as artificial sweeteners, refined sugars and trigger foods like gluten, dairy and high histamine foods and always stay hydrated.

Avoid any prolonged standing and sitting and avoid extreme heat and use good ergonomics.

Never slouch, slump or use soft, unsupportive mattresses or chairs, which force your joints out of alignment for long periods.

Avoid hot tubs, saunas, or sitting in intense and unventilated heat, which can result in blood pressure drops and fainting in people with autonomic nervous system dysfunctions and avoid standing still for long periods of time without moving, as it causes your blood to pool in your legs and use compression wear if you need too.

The conditions that can be mistaken for Ehlers-Danlos Syndrome include Fibromyalgia & Chronic Fatigue Syndrome (ME/CFS), Stickler Syndrome Osteogenesis Imperfecta, Loeys-Dietz Syndrome, Marfan Syndrome and Hypermobility Spectrum Disorders.

Fibromyalgia & Chronic Fatigue Syndrome (ME/CFS) is frequently misdiagnosed alongside of Ehlers-Danlos Syndrome because of overlapping chronic widespread pain and severe exhaustion, although these also lack hypermobility or skin fragility.

Stickler Syndrome affects collagen in the cartilage and the eyes, which leads to joint pain, vision/hearing issues and early arthritis.

Osteogenesis Imperfecta, is also known as brittle bone disease and results in loose joints, frequent fractures and even sometimes blue sclera.

Loeys-Dietz Syndrome is a genetic syndrome that causes arterial aneurysms, skeletal abnormalities and soft and translucent skin.

Marfan Syndrome is a genetic disorder, which affects connective tissue, and often causes unusually long limbs, heart/aortic issues and joint laxity.

And hypermobility spectrum disorders are often confused with Ehlers-Danlos Syndrome, but HSD or Hypermobility Spectrum Disorders involve symptomatic joint hypermobility and pain, but does not meet the strict genetic or systemic criteria for EDS or Ehlers-Danlos Syndrome.

The age that EDS or Ehlers-Danlos syndrome usually starts is from birth, but the symptom onset of EDS or Ehlers-Danlos syndrome is often in childhood or adolescence ages.

EDS or Ehlers-Danlos syndrome often also emerges during puberty.

The actual age of onset of EDS or Ehlers-Danlos syndrome varies.

EDS or Ehlers-Danlos syndrome is a genetic condition that is actually present from birth.

And for some subtypes of Ehlers-Danlos syndrome, the signs may be noticeable as early as infancy, or remain mild enough that the symptoms or signs of Ehlers-Danlos syndrome are not noticed until adulthood.

For Vascular EDS or (vEDS), it's a rarer and more severe subtype of Ehlers-Danlos syndrome and initial symptoms of Ehlers-Danlos syndrome or vascular Ehlers-Danlos syndrome like severe, unexplained bruising might appear in childhood or even adolescence.

Although the most severe signs of vascular EDS or vascular Ehlers-Danlos syndrome, like arterial or organ ruptures are usually the first major indicators and are frequently present in adulthood.

For hypermobile EDS or hEDS and Classical EDS, the signs like hypermobility or double jointedness, frequent joint dislocations and easily bruised, soft or stretchy skin will often appear in early childhood or puberty.

Although, these are also frequently dismissed as being growing pains or clumsiness, which is also why the diagnosis is often delayed until the person is in their 20s, 30s, or even their 40s.

Ehlers-Danlos Syndrome (EDS) is not a type of autism. EDS is a group of genetic connective tissue disorders that affect the skin, joints, and blood vessels.

In contrast, autism (ASD) is a neurodevelopmental condition that affects how a person communicates, interacts, and perceives the world.

While they are entirely distinct conditions, clinical research shows a strong overlap and co-occurrence between EDS (particularly the hypermobile type, hEDS) and autism.

Ehlers-Danlos Syndrome (EDS) can be passed down by either parent.

Because Ehlers-Danlos Syndrome (EDS) is an autosomal condition, the gene is not tied to a specific sex chromosome, meaning both mothers and fathers can carry and transmit it equally.

Autosomal Dominant Inheritance: The faulty gene only needs to be inherited from one parent to cause the condition.

If one parent has this type, each child has a 50% chance of developing EDS.

This applies to the most common type, Hypermobile EDS (hEDS), as well as Classical and Vascular EDS.

Autosomal Recessive Inheritance: The faulty gene must be inherited from both parents for the child to develop the condition (e.g., Kyphoscoliotic EDS).

If both parents are carriers, there is a 25% chance of the child having EDS in each pregnancy.

Spontaneous (De Novo) Mutations: It is also possible to be the first person in your family to have EDS due to a spontaneous gene change that was not inherited from either parent.

725 questions

760 answers

16 comments

94 users

VekDrive.com Cloud Storage and File Sharing.

Get 5 GB Free Cloud Storage when you signup for a free account.

Or get 50 GB of Cloud Storage for $3.00 per month.

VekDrive Cloud Storage

...