I’ve always been an active person who enjoyed sports since I was a child.

As the youngest child in my family, I was eager to demonstrate to my parents that I was capable and self-sufficient.

As a result, I excelled as an athlete.

Years passed, and I was forced to retire from competitive athletics due to a series of ailments.

I experienced a lot of injuries because I didn’t realize I had EDS for so long.

I was later diagnosed with Joint Hypermobility Syndrome (also know as Ehlers-Danlos syndrome (EDS) – Hypermobile type).

What is EDS?

The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that vary in how they impact the body and their sources. The origin of some have been verified as hereditary while others are unknown.

The underlying issue sems to be  a change in the structure or function of collagen and other connective tissue proteins.

They’re generally characterized by joint hypermobility, joint instability and dislocations, scoliosis, and other joint deformities, skin hyperextensibility and abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor.

There are currently thirteen forms of Ehlers-Danlos Syndrome.

Signs and symptoms of EDS

Pain and fatigue are almost universal in Ehlers-Danlos Syndrome. 

It has been shown that muscle weakness is widespread in EDS, and fatigue is a common and clinically important symptom. The findings also point to a direct and positive link between tiredness severity and muscular weakness in EDS.^[1]

Other symptoms are:

• Joint hypermobility
• Recurrent dislocation
• Soft and hyperelastic skin
• Cardiovascular – enlarged aorta, leaky valves
• Pain, often chronic
• Atrophic scars and stretch marks
• Headaches
• Numbness
• Multiple and recurrent hernias and organ prolapses

Extremely loose joints, fragile or elastic skin, and a family history of Ehlers-Danlos Syndrome are frequently enough to diagnose the condition.

Getting a diagnosis can be difficult because the symptoms might be attributed to other disorders, and the syndrome is often widely ignored in the medical community due to its supposed rarity.

This unsatisfied yearning of patients to know what was wrong with them has led to years of bouncing between clinician and clinic, doctor and alternative practitioner, self-help guideline to self-help guideline, with few answers and little help.

Patients usually see multiple doctors and undergo numerous tests, some of which are extremely intrusive.

Typically, only after many years is the patient eventually diagnosed.

Exercise and physiotherapy (treatment)

EDS is a condition difficult to treat.

Many needs, such as access to care and treatment, educational therapy, professional educational programs, and awareness, go unmet.

Because of the frequent fragility of the patient’s tissue, conservative treatment is advised over surgery. 

Many EDS people undergo orthotics to stabilize hypermobile joints, mobility aids, self-care and home aids, and other items to support daily life functioning.

Low-impact workouts can benefit many EDS patients.

Swimming can also be helpful for some EDS patients.

Pain management is an important component of hypermobility treatment.

While physical therapy and exercise can provide some pain relief, people with hypermobility frequently require extra measures to control joint pain.

People with hypermobile EDS may benefit from physical and occupational therapy, psychological support, and self-management.

Conclusion

When there is uncertainty about the reason for the patient’s problems and how to treat this patient, the fallback is to treat the symptoms until an underlying cause can be identified.

As a result, patients don’t feel understood by health practitioners who are focused on illness rather than wellbeing.

Furthermore, they’re not receiving the appropriate treatment for their illness. They end up paying for cure-all programs that aren’t tailored to their own condition.

Because EDS is not a commonly understood or acknowledged disease, my biggest goal is to spread awareness so it can serve as a guide for other people who think there is more to their chronic pain than meets the eye.