Yes, EDS can sometimes cause severe back pain in affected persons, especially in people having Hypermobile EDS. It can affect any joint in the body, including SI joints. Humans have 2 SI joints—one on the left side of your pelvis and another on the right. The SI joints connect the sacrum (the bottom of your spine) with the pelvis (hips).
Patients with the most serious type of this genetic disorder seldom live to be 50. Unfortunately, patients’ connective tissue starts to fail in its ability and obligation to remain attached to and support organs such as tendons, ligaments, cartilage, spinal cord, brain, eye, teeth, and peripheral nerves at some stage. Painful micro-tears damage the organs as the connective tissue deteriorates, causing extreme pain from head to toe. As a result, unrelenting pain sets in, resulting in impairment to the point that patients are bedridden or couch-bound.
Caretaker assistance is needed at this time. Furthermore, the connective tissue has often degraded to the point that it has compromised the patient’s overall wellbeing, potentially resulting in a catastrophic, life-threatening occurrence.
It has become clear that certain patients who present with a condition other than EDS as the cause of their signs may have been misdiagnosed and, as a result, are not receiving the best and most effective pain medication. Many of these patients may not yet associate their pain with their illness. This emphasizes the importance of all pain professionals being familiar with the symptoms of EDS and being able to scan for it.
EDS necessitates aggressive, high-dose pain management.
The most effective treatment for symptomatic patients right now is aggressive, humanitarian pain relief.
Why does EDS necessitate the use of high-dose opioid therapy?
Patients experience intractable pain that renders them unable to move due to the centralized deterioration of connective tissue. In most cases, the need for analgesia increases. In the current topic, a letter to the editor, Treating Ehlers-Danlos Syndrome, shares the treatment approach that I support in my practice.
The most straightforward initial screening is to make the patient fill out a 5-question survey (Figure). If the patient says yes to three of these questions, the next step is to calculate the Beighton hypermobility score. Suppose a diagnosis of EDS appears likely based on the score. In that case, the next step is to consult the International Consortium for Ehlers-Danlos Syndrome and Related Disorders’ diagnostic criteria, which were recently updated.
When a patient has chronic pain and a high score, these conditions are almost always met, in my experience.
Symptoms and Signs of Ehlers-Danlos Syndrome which lead to severe back pain
The signs and symptoms of EDS vary significantly depending on the type of syndrome you have—different forms have different effects on other parts of the body. Some people with EDS, for example, have the most problems with their eyes or teeth, but the hypermobile form causes musculoskeletal issues.
The most popular form of EDS is hypermobile EDS, which is also the least extreme. Symptoms can range from mild to severe: Some people with hypermobile EDS have slightly loose joints, while others suffer from constant joint dislocation pain. Since infants and toddlers with hypermobile EDS have weaker muscles, motor milestones such as sitting, standing, and walking may be delayed compared to babies without EDS.
The key symptom of hypermobile EDS causing SI joint instability is low back pain. Radiating pain in the hips, groin, buttocks, and back of the thighs is also common.
In addition, an upslip is a typical sign of SI joint dysfunction in people with EDS. Upslips occur as one or both pelvic bones go up, causing a “squished” feeling in the spine.