Misdiagnosis is one of the first enemies for a patient suffering from Chronic Pain.
In this small essay, we will focus on a much-debated topic and a growing problem affecting the community around CRPS and its treatment: misdiagnosis. As we have seen in our previous articles, Complex Regional Pain Syndrome is a very tricky condition to diagnose and there are no specific tests that can confirm it. The application of the available diagnostic methods leaves a huge space for mistakes and, even the Budapest Criteria (considered the most complete set of criteria used to diagnose CRPS), can lead to an over-diagnosis rate of up to 32%.
Complex Regional Pain Syndrome is considered to be a rare disease, with a case incidence that goes up to about 6.28 per 100,000 persons-year. When we actually look at the numbers we can see an incidence of more than 26 cases per 100,000 persons-year, becoming more than 4 times higher than what studies show. For example, based on the studies, CRPS should affect around 21,000 people in the USA, however, in 2019 we can count an astonishing number of patients, somewhere between 200,000 and 250,000. What does this mean? Has there been a sudden epidemic in Complex Regional Pain Syndrome? Of course not, there are many reasons for this.
One of the reasons could be that, to diagnose CRPS, a doctor must have extensive knowledge of all the conditions that might show similar symptoms. Therefore, in many countries like, for example, Italy, CRPS is a rheumatic condition rather than a neurological one: a rheumatologist is a doctor that specializes in muscles, bones and nerves, having the most complete picture possible. CRPS can only be diagnosed when any other possible condition is ruled out and, to this day, about 59% of cases are the result of a misdiagnosis. As a matter of fact, CRPS often seems like a go-to diagnosis when a patient presents chronic pain, resulting in useless tests and therapies in a situation of ongoing disability.
If more than 3 out of 4 symptoms listed in the Budapest Criteria are not present, the patient should not accept this diagnosis and look further into it. Recently, diagnoses have been showing the name CRPS-NOS (Not Otherwise Specified), which is not acceptable: in cases like this, a patient should definitely hear a second opinion.
This is a terrible problem because it prevents the patient from undergoing the correct therapy. A condition that has been misdiagnosed for years, especially when it is debilitating, could worsen the situation in an irreparable way. Naturally, some countries are more advanced than others in the treatment of CRPS and this is due to many reasons: from the Healthcare organization, its type, the possibilities of research, all the way to, the relationship between doctors and pharmaceutical companies promoted in the country, which is a sad topic but needs to be considered as well. Some countries, for example, can only offer pain management treatments for CRPS and this can really ruin the life of a patient, who will be “condemned” to use such treatments for a lifetime (when the patient is not fortunate enough to go into remission alone). Another valuable option is represented by rehabilitation programs but, in both these cases, if the diagnosis is wrong, they can lead to a general worsening of a situation that could have improved with a correct assessment: both options require a specific approach, which is usually based on the diagnosis.
Of course, this only means that a doctor can only offer what the HealthCare in which he or she is working can offer. For the patient, the best thing would be to hear a second and third opinion to confirm the diagnosis of CRPS, perhaps with the help of tests like MRI or tri-phase-bone scans. Although it is difficult to diagnose, CRPS comes with some specific symptoms: for example, osteoporosis is considered to be a natural development of the condition to the point that, if not present, it might not be CRPS. Osteoporosis can be treated with bisphosphonates and, therefore, treatments like Neridronate infusions can result very helpful for patients that have been battling this condition for years.
It is important to find a doctor that can perform a proper diagnosis because when it is CRPS, like it happens with many other similar conditions, a correct therapy path can really help in giving the patient a life that can be as normal as possible.
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