The burning question that each one suffering with RSD is "How to Treat It"? Each one of us has to make that decision. Knowledge is important in order to make an informed one.
When I was first diagnosed in 2005, I had never heard of Reflex Sympathetic Dystrophy. Most of you have the same story. So, I listened to my doctor. I let them do physical therapy on my right hand, I took all the medication as prescribed and let him do 5 Stellate Ganglion blocks (SGB's).
I continued to get worse. Since there is no cure for RSD, doctors give up fast.
They told me the best way to avoid it spreading to my other limbs was to amputate my hand.
That's when I started to rebel. A line had been crossed. I began an ongoing journey to find out everything I could about RSD. I joined dozens of support groups, gathering information from each. In the early days, they were my lifeline. I would not have made it without their never-ending support. To this day, I continue to look to these groups for support, love and understanding. Only people that have experienced this burning fire can appreciate the lengths a person will go to reduce the burn.
For 4 1/2 years I took massive amounts of painkillers, patches, antideppresants and anti-epileptic drugs. It never stopped the pain. It did however, stop me from living, thinking and enjoying any type of live outside my home. I left my home every 28 days for my doctor's appointment to get refills. He never had any suggestions for further treatment and because I thought it was hopeless, I didn't either.
I started having major " side effects" from the drugs. My body had built up such an immunity, no amount of drugs would dull the pain. Mentally, I was no longer the lively, curious person I once was. I was a zombie; unable to think, speak or reason. Paranoia was rampant. In a rare moment of clarity my decision was made. Get off the drugs and start living again or quit trying altogether.
Without going into detail, I went to see my doctor about helping me create a reduction schedule to get off all medications. With the drugs I was taking, cold turkey was not an option. The withdrawals alone would have killed me. My doctor refused to help me. He wasn't about to lose a life-long patient in need of his services every month! I changed doctors and started a reduction schedule that lasted 2 months.
That was in June. Today, I am totally drug free and taking tons of vitamins and minerals. I use a TENS unit occasionally to help the pain. I have also started doing meditation, gentle stretching exercises and mirror box therapy. I will try anything that is non-drug or non-invasive. I keep searching................