MysteryPainMom, I'm truly sorry to hear about your daughter and the pain she's going through. My wife has RSD but her's is from an injury. Apparently some folks will get RSD without an injury. I'm no doctor and can only state from my observations of my wife's condition. This situation with your daughter sounds different to me but doesn't mean its not because RSD truly does differ from person to person. I did receive an email that mentions migrains and RSD. I do have one question, has your daughter gotten hives or a rash of anykind? The email I received is posted below.


"Final Progress Report of RSDSA and RSDHope co-funded grant Maternally inherited mitochondrial DNA sequence variants and CRPS-1
Researcher's Name: Richard G. Boles, M.D., Childrens Hospital Los Angeles

The term "functional disorders" refers to conditions that cause symptoms, but no abnormal findings on testing, such as from blood or imaging scans. Examples include migraine, cyclic vomiting syndrome (CVS), chronic fatigue syndrome, fibromyalgia, and irritable bowel, as well as CRPS-I (RSD).

The first finding of this RSDSA and RSDHope-funded study is that CRPS-I patients usually suffer from multiple functional disorders, including the ones listed above.
Second, in this study the Boles group found that disease is primarily inherited in the mother's family in 22% of CRPS-I families. Maternal inheritance suggests that the genetic mutation causing disease is encoded on the mitochondrial DNA (mtDNA), because the mtDNA is inherited exclusively from the mother.

Third, in this study the Boles group found that the mtDNA sequence variant called 16519T is common in CRPS-I patients. Previously, they had found that 16519T is common in CVS and in migraine patients. The data implies that 16519 doubles the risk that a person will develop CRPS-I. Overall, their data suggests that a sizable minority of CRPS-I patients have disease in part due to mitochondrial dysfunction (low cellular energy levels), which in turn is in part due to DNA sequences inherited from the mother.

Their findings suggest that therapies aimed at increasing mitochondrial energy metabolism might be helpful in at least some patients with CRPS-I, perhaps more so in those in which functional disorders are common in relatives that share the same mtDNA sequence (siblings, mother, mother's siblings, sister's children, and the children of female patients). Dr. Boles has anecdotal observations (based on clinical experience, not vigorously studied) that CRPS-I does improve markedly in many children and young adults from families demonstrating maternal inheritance (older patients and those from families without maternal inheritance have not been studied). The therapy that appears to be effective consists of a combination of the following elements:
Amitriptyline (enough to achieve a therapeutic blood level).
Co-enzyme Q10 (starting with 200 mg twice a day (in adults and children over 80 pounds) from gel capsules or liquid preparations, and monitoring for a high blood level)
B vitamins (including 100-400 mg of riboflavin a day)
Exercise in moderation and/or physical therapy (to a degree short of causing substantial pain or fatigue; immobilization generally worsens the pain and disability)
Frequent feedings to avoid fasting.
This regiment has potential side effects, and must be prescribed and followed by an appropriate physician. Therapy is complicated, and generally requires months to show full effects. For patients under age 30 years, referral to my Mitochondrial Functional Disorders Program at Childrens Hospital Los Angeles is a potential option. For more information, contact Dr. Boles at **