Natural Home Remedies for Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome is defined as a group of disorders affecting connective tissues supporting the blood vessels, bones and skin and other organs and tissues.

WHAT ARE THE SYMPTOMS AND RISKS?

As with other syndromes, not all of the symptoms will be present in all patients.

  • Adrenaline issues which affect sleep quality
  • Arterial ruptures
  • Chiari malformations (causing discomfort to disability)
  • Chronic joint pain
  • Digestive abnormalities
  • Erratic blood pressure on rising
  • Erratic heart rate
  • Headaches
  • High risk of internal bleeding
  • High risk of organ rupture
  • Inflammation of the rib cartilage that feels like a heart attack
  • Intermittent brain fog (inattention, forgetfulness, fatigue, confusion…)
  • Interstitial cystitis which causes frequent urination
  • Jaw trouble
  • Joint hypermobility
  • Lack of response to local anasthetics
  • Loose ligaments causing chronic neck strain
  • Nausea
  • Occular difficulties
  • Pain
  • Pregnancy complications
  • Random dislocations
  • Slipping ribs
  • Thin skin that bruises or tears easily and heals slowly
  • Unusually soft skin

PREVALENCE

Prevalence is reported to be one in 400,000 but it is often under-diagnosed.  Vascular EDS, which is more serious, is estimated to be one in 50,000 to 200,000.  It is not easy to diagnose.

Most cases of EDS are genetic disorders.  An  EDS parent has an even chance of passing it to offspring.  It can also occur by sporadic genetic mutation.

ALLOPATHIC TREATMENT

  • Blood pressure medication
  • Braces
  • Exercise to strengthen muscles/Physical therapy
  • Pain medication
  • Surgery to repair damage

SELF TREATMENT

While EDS is considered to be incurable, there are things you can do to mitigate the pain and treat other symptoms.

DIET

A healthy immune system is always the first line of defense against disease, disorder and inflammation.  To promote a healthy immune system, it is important to eat a balanced diet, with as much variety as you can manage, with lots of whole, fresh vegetables and fruits, quality protein and healthy sources of monounsaturated fat.  The Zone is an excellent nutrition plan.

This NCBI article recommends a specific combo of nutritional supplements that are shown to be helpful with some of the symptoms of EDS: https://www.ncbi.nlm.nih.gov/pubmed/15607555.  The abstract reports that there is increasing evidence that nutrition is a “major factor in the pathogenesis of many disorders once thought to result from defective genes alone…”

Here is one person’s experience with a change in diet: https://www.ozy.com/true-story/i-ditched-the-painkillers-for-a-plant-based-diet-and-it-worked/37495

FOODS AND OTHER SUBSTANCES TO REDUCE OR ELIMINATE

To maximize the amount of actual nutrients you take in, avoid empty calories and other substances that are known to be dangerous to anyone’s health.

  • Alcohol
  • Tobacco
  • Processed foods
  • Sugary foods
  • Fatty foods
  • Hydrogenated fats

For TEAS AND OTHER LIQUIDS, HERBS AND SPICES, ESSENTIAL OILS AND OTHER SUBSTANCES AND SUPPLEMENTS THAT CAN HELP WITH INFLAMMATION, please see post on Inflammation

OTHER SUBSTANCES AND SUPPLEMENTS

This NCBI abstract mentions several supplements that would be used together and have helped patients with symptoms: https://www.ncbi.nlm.nih.gov/pubmed/15607555

HYDRATION

Water is essential and a main nutrient for the human body.  Without it, you cannot survive for many days.  Staying hydrated is fundamental for a healthy body, so how much is enough?  There are so many differences in people (i.e., how much we sweat), as well as the diets we consume (a lot of water comes from healthy, whole foods), but a general rule is to consume enough water that your urine is clear, but not so much that you dilute your nutrients.  If you are taking certain supplements that make your urine yellow, then you can start out with the formula of drinking ½ to one ounce of water for each pound you weigh.  If you weigh 130 pounds, drink 65 to 130 ounces of water a day.  Definitely drink when you are thirsty.

EXERCISE

Choose exercises or activities that do not stress your joints too much, while building muscles that support joints.  Swimming is a good choice. Exercise is the best thing you can do for a body with EDS. That exercise is beneficial for overall health is undisputed.  If you are ill, you will want to take it easy, of course, but there is always something you can do to support your body.  Do what you can without making yourself feel worse.  Exercise in fresh air whenever possible.   More advice: https://patientworthy.com/2017/11/21/dos-donts-exercising-with-ehlers-danlos-syndrome/

SLEEP

Studies show that lack of quality sleep affects the production of disease-fighting antibodies.  If you wake in the morning after 7-9 hours of uninterrupted sleep feeling unrested, you aren’t getting enough sleep or you have an underlying health condition.  It is difficult for an EDS sufferer to get good quality sleep so it is important to support the effort through proper diet, exercise and hydration.  See the post for Insomnia for specific suggestions.

EMOTIONAL SUPPORT

Stay calm.  Anxiety undermines health.  Practice relaxation exercises, talk to a friend, meditate.  Do what works for you to stay mellow.  Some of the following relaxation methods may be helpful for you:

ALTERNATIVE THERAPIES

  • Acupressure – https://www.ncbi.nlm.nih.gov/sites/books/NBK1279/ This article has lots of good information not found in this post, but it’s long.  For reference to acupressure, acupuncture, biofeedback and relaxation, scroll down to Treatment of Manifestations/Physical Therapy.
  • Acupuncture
  • Homeopathy – https://steemit.com/hypermobility/@helixhomeopathy/homeopathy-for-hypermobility-and-ehlers-danlos-syndrome
  • Prolotherapy https://www.caringmedical.com/conditions/natural-approach-treat-ehlers-danlos-syndrome/
  • SCIO

CAUTIONS

  • Avoid wind or brass instruments if you are a musician.
  • Go easy on your jaw (watch what you eat or chew and get rest time during dental procedures).
  • Go easy on sports activities and build muscle strength slowly and carefully.

RESEARCH

There is a Center for EDS Research in Baltimore, MD.  They offer clinical care and medical education as well as doing research.

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