Sudeck’s syndrome: the struggle against invisible pain told in the first person

Sudeck’s syndrome: the struggle against invisible pain told in the first person

In this episode of Pirates of Pain, our Medical Director, Dr. Jorge Orduña, brings us closer to one of the most complex and devastating pathologies in existence: complex regional pain syndrome (CRPS), historically known as Sudeck’s syndrome. To really understand it, we have the testimony of Lucía, patient and president of the National Association of Patients with Complex Regional Pain Syndrome.

What is Sudeck’s syndrome and why does it hurt so much?

CRPS is a clinical condition characterized by pain that is disproportionate to the triggering event, which can be a fracture, surgery or nerve injury. Lucía defines it in a very graphic way: “It’s like living a two-for-one situation; you live with the pain and you live with yourself”.

It is not just an intense pain; it is accompanied by visible symptoms such as changes in skin coloration (which can go from red to blue or purple), inflammation, alterations in nail and hair growth, and an extreme sensitivity to touch known as allodynia, where even the touch of a sheet can be unbearable.

The odyssey of diagnosis: the “unicorn” of early detection

One of the biggest problems reported by both our Medical Director, Dr. Jorge Orduña, and Lucía herself, is the delay in diagnosis. The system often labels these patients as exaggerated or refers them directly to psychiatry when no obvious cause is found in conventional X-rays.

Early detection is essential. An early approach using corticosteroid guidelines, specific drugs for neuropathic pain and advanced pain unit techniques -such as sympathetic blocks or neurostimulation- can radically change the prognosis and prevent the disease from becoming severely chronic.

The vital role of rehabilitation and mentality

Lucia shares how her life fell apart after a foot surgery that never healed properly. It took her more than three years to get back on her feet. In her process, she highlights two pillars:

  1. Active rehabilitation: Even if it hurts, movement and desensitization are key to avoid total atrophy of the affected limb.

  2. The purpose: In her case, her son was the driving force to not give up and to learn to “embrace” the pain instead of constantly fighting it, which generates an unbearable emotional toll.

The association and the orange tide

Faced with loneliness and misunderstanding, the association was born. Its goal is that no patient feels alone, offering support, informative webinars and a community that understands what it is like to be awake at four in the morning because of “Lucifer”, as Lucia affectionately nicknames her pain crisis.

Each November is dyed orange to give visibility to this pathology. Under the slogan “Pass the ball”, the association seeks to raise awareness in society and train future doctors, nurses and psychologists from the university so that, when a patient enters the emergency room with these symptoms, he/she knows how to be treated with the dignity and knowledge he/she deserves.

Conclusion

Sudeck syndrome is a story of perseverance. As our Medical Director, Dr. Jorge Orduña Dr. Jorge Orduñaas our Medical Director, Dr. Jorge Orduña, emphasizes, humanity in the consultation and support are as important as the medical technique. Making chronic pain visible is the first step in getting the health system and society to stop looking the other way.