If diagnosed early, treated appropriately and crucially, you are lucky, Complex Regional Pain Syndrome (CRPS) can go into remission. My wife was lucky; extremely lucky. She developed CRPS 1 following surgery but was promptly diagnosed, received early intervention and it went into remission. That was 10 years ago and thankfully she has been largely symptom free ever since. Interestingly, she’s now a specialist chronic pain lawyer helping those who have not been as fortunate as her.
Sadly, the reality is that once CRPS becomes established the prospect of it going into remission is low. The younger you are at diagnosis the better. Those in their teens and early twenties, diagnosed early, do stand the best chance, particularly with more recent advances in treatment. For older adults though, early diagnosis is crucial. Those commencing treatment within 3 months stand the best chance. Beyond 6 months it’s statistically unlikely.
But what does “remission” mean in relation to CRPS?
The term “remission” is most often used in relation to cancer. If somebody is in “complete remission” from cancer, it means that medical investigations can find no remaining signs of the cancer.
Some people with CRPS do seemingly experience a complete remission, where all signs of their CRPS have apparently gone. It may have gone permanently or temporarily. However, for most people said to be in remission, signs of their CRPS do remain. Therefore, remission in the CRPS context is usually better described as a “partial remission”. Symptoms are reduced, sometimes considerably and that reduced level of symptoms may be maintained for 1 year, 5 years, 10 years, perhaps indefinitely.
For many people the maintenance of that remission involves hard work. They often describe the lifestyle changes and rigorous daily regime they follow; activities to avoid, therapies to continue and medication to take.
In fact, it may be surprising to hear that many people who have achieved a complete or near pain-free state will continue to take their medication, perhaps at a reduced dose, but will continue with it nevertheless. And this is usually fully supported by their pain doctor. After all, the mechanisms of CRPS are so little understood that if an individual has, by process of elimination, found a combination of factors that works for them, why risk changing it?
What are the chances of a recurrence of CRPS?
The chance of a recurrence of CRPS is greater than the chance of it occurring for the first time. However, if it does recur following a period of remission, it won’t necessarily recur at the same site and may recur spontaneously, ie there may be no single identifiable reason for the recurrence.
In one study in the Netherlands*, 1,183 consecutive patients at the same centre were studied over time. Unfortunately, the report is silent as to the length of the study, which is frustrating. However, of these 1,183 patients, over the period of the study, it is reported that 34 experienced recurrence in the same limb and 76 in a different limb or limbs. Of these 76, the greatest incidence of recurrence was in the symmetrical limb.
The incidence of recurrence in this study is reported as 1.8% per patient per year. This may sound low, but the important thing to remember is that this is each year, not overall. On my calculation, the overall incidence of recurrence over the period of the study (whatever that was!) was over 9%. Clearly, the incidence of recurrence over a longer or an indefinite period will almost certainly be higher.
Interestingly, studies also suggest that whilst the young have a better chance of achieving remission, they also have a greater chance of recurrence.
Of course, trauma is a common factor in recurrence. Over the years I have acted for a number of people who, prior to a recent accident, have been in remission (complete or partial) from CRPS, often for many years. Following the accident they have suffered a recurrence of CRPS at either the same or a different site.
From a litigation perspective, a lawyer must be ready to deal with the complex causation arguments that will inevitably arise surrounding the potential for recurrence in the absence of the recent accident. Put simply, in the absence of the accident, would a recurrence have occurred at some point in any event? In the Dutch study mentioned above, 50% of the recurrences were said to be spontaneous; a statistic which will seem manna from heaven to the insurance industry.
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