Symptoms of CRPS spreading

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Symptoms of CRPS spreading

One of the more bizarre features of the condition is symptoms of CRPS spreading from the initial presenting site to another area (or areas) of the body. And the new area may be entirely remote from the original.

Spread can occur suddenly and after symptoms have been relatively stable for a long time. Indeed, a former client contacted me recently to advise that her symptoms had begun to spread above her knee after remaining pretty predictable for almost a decade. Understandably, the fear of spread among CRPS sufferers is considerable.

Terminology

When discussing spread, clinicians use several terms:

• Contiguous Spread refers to the enlargement of the original area affected, for example, symptoms gradually creeping up an affected limb.
• Contralateral (Mirror Image) Spread describes the appearance of symptoms in a similar area on the opposite side of the body.
• Independent Spread is where symptoms appear in an area distant from and non-contiguous to the original site.
• Ipsilateral Spread describes symptoms spreading on the same side of the body as the original site.
• Diagonal Spread refers to the symptoms appearing in the limb diagonally opposite the original site.

Research

Despite the publication of at least two research papers, the precise mechanism behind the symptoms of CRPS spreading remains unclear. In considering those studies, I recommend caution as they both involved relatively small sample sizes – 185 and 27 participants, respectively. In addition, each study had different objectives and criteria.

Larger study

The larger of the two, published in the Journal of Neural Transmission in 2011, was a retrospective study of 185 people with the condition. The study considered the spread of CRPS to other limbs only, ie not contiguous or independent spread. They summarised their results as follows:

“We set out to determine patterns of spread of CRPS and the factors that are associated with spread. Our results show that CRPS usually affects one limb but in some cases it spreads to another limb, most often in a contralateral (53%) or ipsilateral (32%) pattern and usually without secondary trauma. A diagonal pattern of spread was nearly always triggered by a new trauma. Spontaneous spread and spread after a separate trauma followed different patterns.”

Interestingly, this study identified that the “median interval between the occurrence in the first and second limb was 21 months.”

Also, “Compared to patients with CRPS in one limb, patients with CRPS in multiple limbs were on average 7 years younger and more often had movement disorders.”

Smaller study

A much smaller study of 27 patients published in the journal Pain in 2000 reported that:

“Three patterns of spread were identified. ‘Contiguous spread (CS)’ was noted in all 27 cases and was characterized by a gradual and significant enlargement of the area affected initially. ‘Independent spread (IS)’ was noted in 19 patients (70%)…’Mirror-image spread (MS)’ was noted in four patients (15%)…Only five patients (19%) suffered from CS alone; 70% also had IS, 11% also had MS, and one patient had all three kinds of spread.”

Symptoms of CRPS spreading: what can we learn from these studies?

Unfortunately, these papers offer little by way of comparison with one another. In one of the few areas of overlap, the percentage of participants experiencing mirror image spread was 49% versus 15%. I suspect this reflects the disparity in (and overall low) sample sizes.

What particularly jumped out at me, though, were the following comments in the smaller scale study:

“Contiguous spread was noted in all 27 cases and was characterized by a gradual and significant enlargement of the area affected initially” [my emphasis].

And:

“Independent spread was noted in [70% of] patients”.

Even treating these results with considerable caution makes uncomfortable reading for anybody with CRPS.