The story of Sandy
For international Rare Disease Day, here’s a game of 20 questions. It’s about my own condition, Complex Regional Pain Syndrome; still also known by its old name: Reflex Sympathetic Dystrophy (RSD)1. . Here goes!
1. What causes CRPS?
2. Why do certain individuals develop CRPS?
3. How can CRPS be triggered by so many different types of trauma or injury?
4. Is CRPS primarily an autoimmune disease or a neuro-inflammatory condition?
5. Why is there such a large range of symptoms of CRPS?
6. Is there a genetic component to CRPS?
7. Are there specific, separate, stages of CRPS?
8. Is CRPS always due to an underlying, if unidentified, nerve injury?
9. Why do different patients have different symptoms of CRPS?
10. How can CRPS be considered rare in some parts of the world, yet not in others?
11. Why do nerve blocks provide short-term pain relief for some CRPS patients, and not for others?
12. If treated early (within 3 months), some cases of CRPS resolve; by what mechanism(s)?
13. Is there any one single underlying commonality, across with all cases of CRPS?
14. Why does CRPS usually begin in a distal extremity (a hand or a foot)?
15. More women are afflicted with CRPS than men; why?
16. Why does CRPS resolve more often in children than in adults?
17. How, and why, does CRPS spread from one part of the body to another?
18. What explains the combinations of autonomic, motor, and sensory symptoms seen in CRPS?
19. Why do we still lack consensus on the basic pathophysiological mechanisms of CRPS?
20. CRPS has had a controversial history since the 1500s, with many name changes; why?
The answer to each of these questions – and many others – about CRPS is either “We don’t know” or “There is disagreement among experts”.