“ Remember RSD is not all in your head.” It is all over your body. It starts from one extremity or one part of the body and if not properly treated, it spreads to other parts of the body. Don’t let anybody convince you to be treated excluively by a psychiatrist or to learn to live with your pain. Just remeber you are not crazy. The pain of RSD is enough to drive anybody out of their mind, but what I admire is the fact that RSD patients still keep their sanity. ― Hooshang Hooshmand, M.D.

CRPS AND AMPUTATION

CRPS AND AMPUTATION

Eric  M. Phillips

The relationship between complex regional pain syndrome (CRPS) and amputation is a highly debated issue within the CRPS community and the medical community. Many individuals affected by CRPS express strong opinions on whether amputation can be a viable treatment option or if it may exacerbate the condition. Some argue that removing the affected limb could potentially alleviate the intense pain associated with CRPS, while others contend that amputation might lead to further complications and an increase in pain levels. This division often stems from personal experiences, as some patients report relief after amputation, while others find their symptoms worsening. The lack of consensus on this topic highlights the complexity of CRPS and the need for more research to understand the implications of amputation in those suffering from this debilitating and painful syndrome.

The syndrome of CRPS and amputations have been documented for centuries by many pioneers of medicine from Doctor Ambroise Paré to Doctor Silas Weir Mitchell and beyond. One must remember that a majority of these amputations were performed during war time due to the injuries that the soldiers sustained during battle (1).

As a patient living with CRPS for the past four decades, I have faced numerous challenges, including the significant life-altering decision to undergo an above-knee amputation, which I will mark as 18 years this coming August. Throughout my journey, I have been acutely aware of the inherent risks associated with amputation, particularly in the context of CRPS, a condition characterized by chronic burning pain and sensitivity. The decision to proceed with the amputation was not made lightly; it involved careful consideration of my health, quality of life, and the potential for improved mobility. The complexities of managing CRPS alongside the physical and emotional ramifications of losing a limb have shaped my experience, compelling me to navigate a path filled with both obstacles and opportunities for resilience.

Amputation should not be considered a treatment option for the pain associated with CRPS. It is important to understand that removing a limb does not effectively address the underlying issues of CRPS and may not alleviate the pain. It should only be reserved  for the following factors:

• When the patient has reached the fourth stage (end-stage) of  CRPS.
• When the patient has developed ongoing infections in the affected limb that have become antibiotic resistant.
• When the patient suffers from a useless limb syndrome (ULS). ULS is when the patient has lost all ability to use the affected limb for a duration of over one year or more.

Unfortunately, in some cases of CRPS patients who have undergone an amputation due to infections and end-stages of the disease unfortunately they cannot wear a prosthesis due to many factors such as pain or sensitivity in their stumps or for other reasons (1).

Remember, having an amputation is not a cure-all for CRPS. It may cause other complications such as phantom pain, infections, spread of CRPS, and not being able to wear a prosthesis (1).

Before considering amputation of a limb affected by CRPS, it is crucial to thoroughly research the implications and outcomes associated with such a significant decision. Engaging in conversations with individuals who have navigated the challenges of living with CRPS and have undergone amputation can provide invaluable insights and perspectives. These personal experiences can shed light on the emotional, physical, and psychological aspects of the journey, helping you to weigh the potential benefits and drawbacks. It is essential to approach this decision with a comprehensive understanding, as the ramifications of amputation extend beyond the immediate physical changes and can profoundly impact one’s quality of life. Taking the time to gather information and seek support from those who have faced similar circumstances can empower you to make a more informed choice regarding your health and well-being.

In my first book about CRPS, I delve deeper into the subject of CRPS and its relationship with amputation, exploring various facets of this complex pain syndrome. The book provides a comprehensive overview of CRPS, detailing its symptoms, potential causes, and the impact it can have on individuals who experience it. I also discuss the psychological and emotional challenges that often accompany the physical pain, as well as the treatment options available. By sharing my personal story with CRPS and amputation, I aim to shed light on the realities of living with CRPS and the journey of those who have undergone amputation, offering readers a better understanding of this often-misunderstood syndrome.

Reference:

1. Phillips EM. Complex Regional Pain Syndrome (CRPS): Learning About the Different Aspects of A Painful Syndrome: Volume I. Amazon Books. 2022. Chapter 8; 129-157.