Is Ehlers Danlos painful?

Yes, Ehlers-Danlos syndrome is characterized by persistent pain and discomfort, which frequently affects the joints, muscles, and nerves of the body. It can also result in stomach discomfort and headaches if consumed in large quantities.

It wasn’t long ago that the term Ehlers-Danlos Syndrome (EDS) was associated with a lack of relevance and urgency in the field of chronic pain. More and more patients presenting to pain practitioners across the United States are being diagnosed with EDS, which is becoming more apparent. The US National Institutes of Health estimates that 1 in 10,000 to 1 in 15,000 people worldwide suffer from this condition. There are some characteristics and clinical manifestations of this condition that all pain practitioners should be familiar with so that they are prepared to identify, correctly diagnose and treat patients who have this condition.

Recognizing Ehlers-Danlos Syndrome

Because of this, EDS has been dubbed “hypermobility syndrome” (in circus terms, “the rubber man”) because patients can dislocate their body extremities out of their joints.

EDS is believed to be the most common genetic connective tissue disease that causes intractable pain and necessitates high-dose opioid therapy (i.e., double-jointed). Joint degeneration and degeneration and degeneration and deterioration of connective tissue in the spine, eye, gums and teeth, internal organs, and central nervous system are all caused by this condition (CNS).

Patients suffering from the most severe form of this hereditary disease rarely survive past the age of 50. In most cases, patients eventually reach a point where their connective tissue begins to fail in its capacity and duty to remain attached to and support organs such as tendons, ligaments, cartilage, the spinal cord, the brain, the eye, the teeth, and the peripheral nerves. The organs are affected by excruciating micro-tears that occur as the connective tissue deteriorates, resulting in intense agony that is felt from head to toe. As a result, unrelenting agony sets in, resulting in the severe handicap to the point where people are confined to their beds or on their couches.

At this point, the support of a caretaker is required. In addition, the connective tissue has frequently degenerated to such a degree that it has compromised the patient’s general health to the point where a catastrophic, life-threatening event may take place. For example, cerebellar herniation, spinal cord tethering, adhesive arachnoiditis, aortic or cerebral vascular rupture, uterine rupture, and visceroptosis are all expected catastrophic outcomes in people with EDS.

It has become increasingly apparent that some patients who present with a diagnosis other than EDS as the origin of their symptoms may have had their diagnoses wrongly determined. As a result, they are not receiving the most suitable and necessary pain treatment. Many of these patients may not even be aware that they have an illness that is causing them agony. This emphasizes the importance of all pain practitioners becoming well-versed in the appearance of EDS and being prepared to screen for the condition in their patients.

EDS necessitates aggressive, high-dose pain management.

When it comes to symptomatic individuals, the most effective treatment is vigorous, humanitarian pain management.

What causes EDS to necessitate the use of high-dose opioid therapy?

Patients experience intractable pain as a result of the progressive centralized breakdown in connective tissue, which causes them to become unable to function. In most cases, the demand for analgesia increases. The therapeutic method that I support in my practice is described in detail in a letter to the editor, Treating Ehlers-Danlos Syndrome, which appears in the current edition of The Journal of the American Medical Association.

The quickest and most straightforward initial screening method is to have the patient complete a short. If the patient responds positively to these questions, the next step would be to determine the Beighton hypermobility score for the patient. Suppose the score indicates that an EDS diagnosis is likely. In that case, the final step is to consult the diagnostic criteria published—and recently updated—by the International Consortium for Ehlers-Danlos Syndrome and Related Disorders.

According to our observations, these criteria are usually always met when the patient is in persistent pain and has a positive score on the pain scale.

One of the most compelling reasons to screen for and properly diagnose EDS is that more and more promising evidence suggests that high-dose opioid medication combined with supplementary hormones (as needed on an individual basis) may be an effective method of pain control. According to reports, hormone therapies appear to delay the degradation of connective tissue and restore it. Human growth hormone, human chorionic gonadotropin, oxytocin, and nandrolone, to name a few, are among the hormones that have shown the most promise in recent years.

Aside from that, patients can be led to various exercises and physical supports that have been developed specifically for EDS, which are frequently made available through EDS support groups and websites.

For many persons suffering from Ehlers-Danlos syndrome, medication can be a critical component of their pain treatment plan.

People may take over-the-counter pain reliever drugs such as acetaminophen (Tylenol) or ibuprofen regularly to control their symptoms (Advil, Motrin). In the case of acute injuries, prescription pain medications may be required.

Your doctor may prescribe other medications if you are experiencing additional symptoms. People with vEDS, for example, may require blood pressure-lowering drugs in order to lessen the risk of ruptured blood vessels in their legs.


In some situations, surgery may be essential to do the following:

  • Heal joint injury
  • Repair rupture blood vessels
  • Contribute to joint stabilization
  • Lessen the amount of pressure on the nerves

On the other hand, surgery is associated with increased risks because of the skin problems caused by Ehlers-Danlos syndrome, such as poor healing.

Lifestyle changes

People suffering from Ehlers-Danlos syndrome may be able to manage their symptoms by doing the following:

  • Avoid heavy lifting, contact sports, and other activities that place an excessive amount of strain on the joints or increase the likelihood of injury.
  • Putting on a protective helmet and supportive braces when participating in sports.
  • Try swimming, Pilates, yoga, or other moderate workouts to see if they work for you.
  • Obtaining enough sleep and developing a healthy sleep routine in order to avoid weariness.
  • Avoiding hard foods and chewing gum both of which increase the likelihood of a jaw injury.
  • Taking breaks during dental work to prevent the jaw from becoming overworked
  • It is recommended that you avoid playing wind or brass instruments since they may increase the risk of a collapsed lung, especially in persons who have vascular EDS


Living with Ehlers-Danlos syndrome comes with its own set of difficulties, and people affected by the condition can benefit from the help of others.

Individuals suffering from Ehlers-Danlos syndrome can seek assistance from a wide range of sources, including:

  • Members of the family
  • A co-worker
  • Friends
  • A business owner or a teacher
  • Any medical professionals
  • A therapist, such as a counselor or a psychotherapist, or a psychologist
  • Members of an online support group
  • Participants in face-to-face support groups
  • A physiotherapist (physical therapist)
  • A person who works as an occupational therapist
  • A genetic counselor


Patients with Ehlers-Danlos syndrome have varying prognoses based on the type of Ehlers-Danlos syndrome they have and the severity of their symptoms.

Aside from the vascular variety, most varieties of Ehlers-Danlos syndrome have a low risk of shortening one’s life span.

EDS people are at greater risk of organ or blood vessel rupture; however, taking the necessary measures and receiving the appropriate treatment can reduce this risk.

Patients with EDS who used celiprolol, a blood pressure-lowering medicine, had a high survival rate and had a low occurrence of arterial problems on an annual basis, according to the findings of one long-term study of another.

Even though Ehlers-Danlos syndrome can produce uncomfortable symptoms, lifestyle adjustments and medical therapies can provide relief, improve the quality of life, and diminish the likelihood of injury or complications.

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