Last Modified on Aug 29, 2014
What Is Ehlers-Danlos Syndrome?
The connective tissue in the body is comprised of a mixture of proteins and other substances that provides firmness and resiliency to the body and its structures. Periodically, disease and other conditions affect these tissues and diminish the body’s underlying system. Ehlers-Danlos syndrome is a collection of hereditary disorders that affect the connective tissues, typically the skin, joints and blood vessels. Individuals with Ehlers-Danlos syndrome typically have overly flexible joints and stretchy, thin skin. More severe cases of the syndrome involve the walls of the blood vessels, intestines and uterus and is called vascular Ehlers-Danlos syndrome.
One characteristic symptom of the condition is Ehlers-Danlos syndrome pain. Additional symptoms include overly flexible or loose joints, stretchy skin, thin or fragile skin and fatty lumps located at pressure points. Associated symptoms include abnormal range of motion in the joints and increased susceptibility to wounds, difficulty healing. Additional symptoms include velvety skin, increased susceptibility to bruising, skin folds around the eyes, muscle pain, muscle fatigue and heart valve problems.
Ehlers-Danlos syndrome is generally considered a genetic disorder that is passed or inherited. The cause of Ehlers-Danlos syndrome is generally a defective chromosome that affects the formation of collagen.
Holistic Treatment for Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome pain can be treated effectively using a holistic or naturally-based system of treatment. Several supplements are particularly important for boosting the collagen in the skin and rebuilding elasticity. Vitamin C, MSM, aloe vera, gelatin and hyaluronic acid all help replenish collagen and restore skin firmness. Apple cider vinegar and honey as well as vitamin D are also important for restoring the balance of nutrients in the body. Additional elements of a holistic treatment plan include diet and exercise. Maintaining a healthy diet of whole foods and avoiding sugar can alleviate general pain associated with Ehlers-Danlos syndrome. Yoga and other stretching activities can also tighten and realign the body’s structure and relieve pain.
I have very recently been diagnosed with Ehlers Danlos Syndrome Type 3 (Hypermobility). It is a genetic collagen function deficiency that affects all connective tissue in the body. Both large and small joints are unstable, and certain joints (such as the shoulder, knee, and jaw) tend to dislocate frequently. Chronic joint and limb pain often begins early in life. My ankles, wrists and knees subluxate frequently and I've had my hip spontaneously dislocate - took 5 months to heal as I knew I was in pain but thought I had only pulled a muscle. My joints pop often and feel like they are wiggling around. Many joints dislocate. This chronic disease only gets worse over the years. I am 47 years old and have had these problems since I was 13, that I can remember. Over the last 2 years I have gotten worse but thought it was due to my weight and inactivity. Every time I would begin an exercise regimen I would injure myself, even when I thought I was doing something low-impact. Last fall I had about a month of extreme pain in my legs at night (and thought it was restless leg syndrome, weird, I thought), and back in February my back was excruciating and I was laid up for a week on heavy narcotic medicine that did little to relieve the pain). I hate taking meds for anything and usually rely on natural methods but this was so bad I was willing to put that stuff in my body. Depression inevitably followed. Bowel problems are also associated with this disease.
My question is, does anyone here have any thoughts or ideas regarding either:
1. Rebuilding collagen in the body? It may or may not work since how my body uses collagen is one of the issues.
2. Ways to gently strengthen muscles around connective tissue? I'm thinking yoga...
3. Other methods that might reduce the stress on my joints? My body will continue to deteriorate and I'm trying to avoid crutches or wheelchairs in my future.
Any thoughts are welcomed and hopeful. I did notice Ted had one mention of EDS in a post but it references his desire to find a cure. Currently there is not one. Thank you anyone and everyone for your help.