I was diagnosed with Hypermobile Ehlers-Danlos syndrome (hEDS) in 2024, at the age of 36yrs, following a lifetime of suffering without answers or explanation for my daily pain. I’m now on a warpath to raise awareness and find solutions to symptoms in order to improve my quality of life, and help others who suffer from this disorder. So let’s take a look at what this disorder involves and how best to help and manage symptoms…
EDS is a genetic connective tissue disorder that affects the body’s collagen production. Collagen is a protein that helps to provide structure and support to the skin, joints, and blood vessels, and so people with hEDS have a flaw in their collagen which can lead to a variety of symptoms. These symptoms includes:
- Joint hypermobility: This is the hallmark symptom of hEDS and refers to having joints that move beyond their normal range of motion. This can cause instability and pain in the joints.
- Chronic pain: Pain is a common symptom of hEDS and can affect any part of the body. It can be caused by joint instability, muscle fatigue, and inflammation.
- Fatigue: Many people with hEDS experience fatigue, which can make it difficult to carry out daily activities.
- Easy bruising: People with hEDS often bruise easily because their skin is fragile.
While these are some of the main symptoms of hEDS, it’s important to note that this condition can affect people in many different ways. Some people may have only mild symptoms, while others may have more severe symptoms that can significantly impact their quality of life and worsen with age.
Handling hEDS As We Age
Unfortunately there is no cure for hEDS, and the symptoms can worsen over time. However, there are things that can be done to manage the condition and improve your quality of life. Here are some possible changes you might experience with age:
- Increased joint pain and stiffness: As you age, the wear and tear on your joints can worsen the pain and stiffness associated with hEDS.
- Joint instability: Over time, loose joints may become even more unstable, leading to more frequent dislocations.
- Muscle weakness: The chronic pain and fatigue associated with hEDS can lead to muscle weakness.
- Osteoarthritis: People with hEDS are at an increased risk of developing osteoarthritis, a type of arthritis that causes pain and stiffness in the joints.
In some cases, hEDS can also lead to other complications, such as:
- Digestive problems: People with hEDS may experience gastroesophageal reflux disease (GERD), constipation, or other digestive problems.
- Cardiac issues: Mitral valve prolapse is a common heart valve abnormality in people with hEDS.
- Pelvic organ prolapse: This occurs when the muscles and tissues that support the pelvic organs weaken, allowing the organs to drop down.
- Psychological problems: Chronic pain and fatigue can lead to anxiety and depression.
Inflammation & hEDS
While Ehlers-Danlos syndrome (EDS), particularly hypermobile EDS (hEDS), isn’t itself an inflammatory disease, inflammation can play a significant role in how it manifests and worsens symptoms. Indirect effects of inflammation include:
- Increased pain: Inflammation can irritate nerves and tissues surrounding joints, leading to increased pain and discomfort, a hallmark symptom of hEDS.
- Joint instability: Inflammation around joints can contribute to further instability, a major issue in hEDS. This can lead to more frequent subluxations (partial dislocations) and dislocations.
- Muscle fatigue: Chronic low-grade inflammation can contribute to muscle fatigue, worsening the tiredness often experienced by people with hEDS.
Possible sources of inflammation in hEDS:
- Mast cell activation syndrome (MCAS): Some people with hEDS also have MCAS, a condition where immune system cells called mast cells release excessive inflammatory chemicals. This can cause widespread inflammation and allergy-like symptoms throughout the body.
- Microtears: The loose joints and hypermobility characteristic of hEDS can lead to tiny tears in tissues and tendons. The body’s natural inflammatory response to repair these microtears can contribute to chronic, low-grade inflammation.
- Gastrointestinal issues: Many with hEDS experience digestive problems like GERD. This inflammation in the digestive tract can further contribute to overall body-wide inflammation.
It’s important to note that research on the exact link between inflammation and hEDS is ongoing and not everyone with hEDS experiences significant inflammation.
Natural Remedies To Reduce Inflammation
If you suspect inflammation is playing a role in your hEDS symptoms, there are ways to manage it:
- Diet: Following an anti-inflammatory diet that limits processed foods, sugar, and unhealthy fats may be helpful.
- Supplements: Certain supplements like curcumin, and vitamin D may have anti-inflammatory properties. However, it’s crucial to discuss these with your doctor before starting them.
- Physical therapy: Exercises that strengthen muscles and improve joint stability can help to reduce stress on joints and potentially lessen inflammation.
- Medications: In some cases, medications like anti-inflammatory drugs or medications to manage MCAS may be necessary.
- Fruits: Berries like blueberries, strawberries, cherries, and raspberries. These are packed with antioxidants called anthocyanins which have anti-inflammatory properties
- Vegetables: Cruciferous vegetables like broccoli, cauliflower, kale, and Brussels sprouts are full of sulforaphane, a potent anti-inflammatory compound . Also include tomatoes which are rich in lycopene, another antioxidant with anti-inflammatory effects.
- Nuts and Seeds: Flax seeds, chia seeds, and walnuts. These are all rich in omega-3 fatty acids which are known for their anti-inflammatory properties .
- Spices: Turmeric, the golden spice, contains curcumin which is a powerful anti-inflammatory compound. Ginger is another great anti-inflammatory spice .
- Green Tea: Rich in epigallocatechin gallate (EGCG), is a powerful antioxidant with anti-inflammatory properties.
- Healthy Fats: Try to include plenty of healthy fats in your diet. Extra virgin olive oil and avocado are great sources of healthy fats which can help to reduce inflammation.
- Stay hydrated: Drinking plenty of water helps to keep your body functioning properly and may help to reduce inflammation.
- Manage stress: Chronic stress can worsen inflammation. Find healthy ways to manage stress, such as yoga, meditation, or spending time in nature.
Remember that while these tips may help to reduce inflammation and symptoms of hEDS, it is important to talk to your doctor about any health concerns that you have.
