Complex regional pain syndrome (CRPS) is a chronic, progressive, and "incurable"pain condition that most often affects a limb usually after an injury -even a minor one. CRPS is believed to be caused by damage to, or malfunction of, the sympathetic nervous systems. It results in bone loss, muscle atrophy and permanent disability/disfigurement. An individuals circulation and temperature perception becomes compromised. Peripheral neuropathy and burning pain are hallmarks symptoms. It is the most painful condition on the McGill pain index, beating both cancer and labor pain.
On August 26th, Gemma sprained her ankle and developed this devastating condition. Since then she has struggled to maintain her job, unable to partake in activities she loves and has been in constant, intractable pain.
She has been told she will never be able to power lift again and likely will become permanently disabled in time. She refuses to accept this reality and chooses to fight. Remission of symptoms is the goal.
Although there is no cure for CRPS, there is a bisphosphonate infusion, Neridronate Acid in Italy that is showing promising effects for candidates who have been diagnosed early. The drug is currently not FDA approved in the US but is under clinical review designated as a potential "breakthrough" therapy for CRPS.
Bisophospates are a class of drugs designed to prevent bone loss, or bone disease like osteoporosis. The infusion takes place over a 10 day period in which you are required to stay a minimum of 14 days in Italy.
There are also IV immunoglobulin and ketamine infusions and spinal cord stimulators. Another option is a 10-week intensive nuerologic therapy program in Arizona.
She has been receiving a series of nerve blocks and sometimes the prior authorization does not come through in time. The last one cost $715 alone.
Unfortunately these treatments cost thousands and insurance companies will not cover them.
In trying to determine the best treatment approach, Gemma has been to numerous neurologists, rheumatologists, cardiologists, vascular doctors, a physical therapist, chiropractors, a pschyiatrist and two different pain management doctors.
Being able to recieve these treatments ASAP may Gemma's best hope for "remission" and a "normal" life but she need help. Every little bit helps.