What it means for patients and caregivers.

Living with Complex Regional Pain Syndrome is a huge challenge that can be difficult for anyone: with the intense pain and, often, extreme levels of disability involved, any daily task can be a very difficult mountain to climb. In this article, we would like to briefly look at what this condition can mean for a person to live with CRPS.

Furthermore, since these words are written based on our experience in assisting people suffering from CRPS, we think it is equally important to consider that this debilitating condition represents a huge challenge, not only for the patients, but also for their family, friends and doctors.

The causes of this condition are, to this day, unknown. This is also because, as we have seen in our previous articles, the word “Complex Regional Pain Syndrome” is as general as it could be and, many doctors, refer to it when they can’t find any other explanation to the pain. Moreover, only recently the name “CRPS” was accepted globally: before this, it was known with different names (RSD, Sudek disease, algodystrophy…).

Although CRPS is very hard to diagnose because of its similarities with other conditions, its clinical picture is recognizable. For example, most times there is a triggering event, it generally affects a limb (if it affects a different body area it is very likely to be a misdiagnosed case of CRPS), it is often connected to the immobilization of the limb (cast, braces and so on) or some type of damage that could come from surgery as well.

Once it is triggered, the condition manifests through a continuous and long-lasting inflammatory reaction that, among all other symptoms, causes intense pain. This is where things become tricky: when pain occurs, every other symptom seems secondary and that is all that matters for patients.

The pain puts the patient in very debilitating situations that prevent the person from doing things that, before, were easy and natural. Doctors can only suggest what is available in their Countries’ Healthcare and, most of the times, it is only pain management treatments. These treatments might be useful, yes, but they can only help on temporarily making the situation bearable, if anything. In this situation, the patient is left with a most terrifying diagnosis, with the thought that nothing can help and that there is no way out.

Giving patients this idea, is the first and most common mistake: it is true that this condition is very hard to treat, but it can be put into remission and, as difficult as it is to acknowledge, a positive mind setting is the key. It is mostly important not to give up, becoming dependent on pain medications that, on the long term, will have less and less effect. Pain management treatments are very useful to help the patient in recovering with the use of a rehabilitative and multidisciplinary program. These programs need a great amount of patience because the recovery is slow, and it requires a lot of effort.

A negative state of mind will create a vicious circle that is extremely harmful for the patient: when the patient completely relies on the pain medications, it will be difficult to start on moving and coping with the situation. This will cause a lot of complications that, eventually, will worsen the situation by causing muscle loss, a much slower recovery, all the way to putting patients in a bad shape, even when they were athletes before the injury. The patient needs to know that, according to recent researches, fat tissue is constantly putting inflammatory substances in the bloodstream. This is also confirmed by the fact that cellulitis can cause similar inflammatory reactions that, sometimes, could be mistaken as CRPS.

These factors being so important, a correct approach to this condition will demand a consistent and drastic change in lifestyle. From diet to daily exercise, everything adds up in improving the situation: pain medicines can help a patient living with CRPS in the initial and acute phase of the condition. In this first moment, many doctors prescribe minor pain management drugs and, usually, they are steroidal medicines. This is so that the doctor or therapist can correctly assess and evaluate the condition, and, with the steroids, they are able to keep the inflammatory reaction under control to visit the patient and touch the affected area. Once the condition is diagnosed the patient must keep on exercising and discuss with the doctor the treatment path to go through. There are many options for the treatment of this condition all over the world but, for now, the only one that has been linked to a remission from this condition and that is not a mere pain management path, consists of Neridronate infusions. Of course, even these infusions require to be sided by a multidisciplinary approach including options like mirror therapy, occupational therapy, massage, physiotherapy and so on. We need to keep in mind that every patient suffering from this condition is in a different situation, so the correct therapy path needs to be formed around the patient itself. 

Along with the physical issues that this condition brings upon a person, as we have said, there are multiple psychological complications that occur as well. We have already seen how a positive mind setting is vital when facing this diagnosis, but it is also worth seeing why. Pain in general, especially when chronic, can create paths in the mind of patients from which it can be difficult to come out. This is why it is extremely important not to lose hope: it is true that CRPS can be triggered by an initial physical trauma, but it is not casual that, statistically, patients suffering from it are more inclined to be anxious, depressed or simply in a stressful moment of their life.

Once the patient sees that the pain is getting worse, even the presence of loved ones can cause flare ups. Here, a vicious circle starts: the pain causes anxiety, which leads to depression, which worsens the pain. We will better investigate these mechanics in future articles, but, as for now, this is enough to explain why many doctors decide to approach this condition directly with antidepressants or tranquilizing drugs.

At this point, however, it could be useful to take a closer look at the depression symptoms: the negative thoughts related to pain can go in 3 different directions.

•         Negativity towards myself (“I am useless and helpless”)
•         Negativity towards the world (“nobody and nothing can help me”)
•         Negativity towards the future (“I am never going to get better”)

For the people surrounding the patient (family, doctors, friends…) it is mostly important to consider the second point, as it is the only one that they can help with. It is important to understand what one needs: being too invasive in the patient’s life can be as harmful as not caring at all. While it is important to be supportive and encouraging, it is equally important not to over-protect the patient living with CRPS. As we have seen, it is difficult to treat CRPS and it requires a lot of patience. External help can be very useful when it helps the person suffering from CRPS to feel at ease, comfortable and as peaceful as possible.

Like we have said before, living with CRPS means that a person is most likely suffering from anxiety: every touch could be painful, every task is hard and, around the corner, flare-ups. In such a situation it is important for the patient to feel surrounded by caring people and knowledgeable professionals.

Living with CRPS is hard: remission is a long and challenging path and there is no shortcut. However, with the correct approach and commitment, it is a condition that is possible to fight.