Originally Posted by jenno

Hi Lisa,

I am very sorry to hear of your daughter’s struggles. My 19-year-old daughter, Sarah, was diagnosed with abdominal RSD a few months after she developed RSD from an ankle sprain. That was five years ago. At that time, I remember how difficult it was to find information about internal RSD so I am aware of the challenges that you face. Sarah’s medical history is long and complicated and I don’t want to overwhelm you; but I pray that something I may say will help you to find help more quickly and easily than we have.

The only treatment that ever provided pain relief was hyperbaric oxygen treatments. These were a great blessing for a while but eventually stopped being an effective option. Desperate for help, we have spent the past year in constant search for answers. Although some tests are still pending, we have made progress. Sarah had seen seven g.i. doctors before the eighth finally ran the correct tests and diagnosed her with Gastroparesis (paralysis of the stomach). Autonomic nervous system tests were abnormal (Dysautonomia), and skin biopsies showed small fiber neuropathy. Although these diagnoses are similar in nature to RSD (nervous system disorders), they necessitate treatments that are not typical for RSD.

Sarah’s neurologist also ordered blood tests that indicated an autoimmune disorder is causing autoimmune neuropathies. He has prescribed I.V. immunoglobulin treatments, which have the potential to repair damaged nerves. You might also want to search organ involvement on the RSDSA web page. There is a report about stomach complications associated with RSD. The doctor who wrote this has found that Botox injections have been a successful treatment option; but unfortunately they provided no relief for Sarah.

As is the case with almost all RSD sufferers, there have been doctors who have implied it was all in Sarah’s head or others who suggested it was an eating disorder. Watching her struggle, this never added up; but I share this as I suspect that you too will encounter such ignorance.

I pray that you find help and answers soon!!

Jeanne