Hello everyone,
This is my first time posting so i thought it appropriate to share my story. My story begins about 2 years after I lost my youngest son to Neuroblastoma. It was summer of 1999 and i began to have trouble with my feet. My arches hurt and my heels felt like they were on fire at times. My ortho diagnosed me with heel spurs and began cortizone injections. First in the right foot. After the 3rd one I still had little relief from the pain . One day while at my sons softball game I stepped off the curb at the local grocery store where I had gone to get the team snacks and felt the most intense burning in my right arch. It stunned me as I couldnt imagine what had happened . By the end of the day the foot had swelled up and was so painful I couldnt step on it. I went to the ER where they suspected a ruptured fascia. They immobilized my foot. I went back to my ortho the following week where he confirmed the dx of ruptured fascia to the right foot. He casted me and sent me on my way.After 4 weeks in the cast i developed Tarsell tunnel syndrome. (This was confirmed by an EMG. I was in Nursing school at the time and was worried about how this may affect school. "No problem " assured my ortho you will be back on your feet in a week or 2. I was amazed ! 5 days after surgery I was back at school in a walking cast ! My ortho was very pleased as was I. 6 months later I was finishing up my last round of clinicals before graduation from my nursing program when i stepped off the curbe at the Hospital I was interning at and my left foot followed suite! I couldnt believe it ! I was again diagnosed with a ruptured fascia of the left foot and casted for it. As was the case with the right foot i developed Tarsell tunnel syndrome and was scheduled for surgery. By this time I was graduating from nursing school and about to start my first nursing job with a local Dr office. Neither my Ortho nor I had any reason to believe that this surgery wouldnt go as well. But we would find out later how wrong we were. My surgery appeared to go off without a hitch. It was late summer of 2000.After surgery my pain did not go away like with my right foot. It seemed as though the surgery did nothing to help it. 6 months after my surgery I demanded another EMG study to see if the medial nerve was still delayed. My ortho agreed and it was ! He rescheduled my surgery and thats when my nightmare began.I remember coming out of surgery with a different kind of pain. An amazingly intense pain that the regular post op pain meds wouldnt touch. My foot began to turn blue and mottled and swelled up to 2-3 times its size while in the cast so I had it removed. I remember the sensitivity I couldnt stand for the wind to blow on it or water to touch it. Even attempting ot put on nail polish was agonizing. 12 weeks after my 2nd surgery on my left foot I was diagnosed with RSD by my Ortho . He immediately sent me to a pain specialist to begin blocks. I remember the first doctor i went to he attempted to do an epidural on me ! I said my Ortho said that I was supposed to be getting Lumbar Sympathetic blocks ! He acted startled as he explained that this was what he was attempting. Needless to say I hobled out of his office never to return ! My ortho apologized and sent me to a different doctor. He was a specialist in RSD treatment and was considered one of the best in his field. I went to this doctor who turned out to be brutal ! He drugged me up with versed and proceeded to ram the lumbar needle into my back despite my cries to stop ! When it was all over he explained that his patients accused him of being rough but all in all he was trying to do what was best for them ! This block lasted a total of 7 hours and a few days after receiving it my RSD pain increased 100 fold ! It had made it worse ! The burning nerve pain and swelling was so bad I thought I would go out of my mind ! At that time I was on Percocet 10 mg x2 qid. This didnt even begin to touch the pain I was experiencing and i truly thought I was dying ! I was so affraid when i went to the 3rd and final pain specialist to finish my lumbar sympathetic block treatment series. He explained that he was gentle and did not believe in drugging up his patients and then rushing through the procedure. He assured me that he was stop if i felt any unusual discomfort . During the last 2 blocks with him he honored his promise. However the longest they lasted was just a few hours and the 3rd one set the RSD off again ! By the time I recovered from that final block I made a promise to myself. I would never allow my doctor to perform this block on me again. Over the next several months I sought out herbalists and tried accupuncture,herbal remedies,yoga. You name it I tried it.Nothing ever seemed to make a difference. I finally accepted the fact that barring a miricle I was going to have to learn to live with this illness. I was put on Oxycontin and many other drugs that were supposed to assist with my pain. I am now on Lyrica,Cymbalta,Gabitril, and long acting narcotic meds.I take it a day at a time. 3 years after becoming a nurse I had to give up patient care and have taken a more administrative role. I have flare ups that seem to come on out of nowhere. I cant sleep in my own bed as my leg needs to be elevated at all times. In 2003 my Ortho performed a carpal tunnel release surgery on my left wrist after i began to loos function in it and the RSD spread to my wrist. I now have RSD on my entire left side.I try to embrace life and be thankful for every moment we have. I get depressed at times as it has been so long and I am still sick ! But then i think of my son and all that he went through with cancer. He never complained ! And i try to live my life to the fullest in honor of the life he would never get to live. I have a wonderful husband who is amazingly brave as he too has chronic pain as well and can relate to what im going through and i have 2 amazing sons whom I adore ! Im sorry for rambling but wanted to share my life so that you have an idea of who I am and where I have been. Bless you all and gentle hugs of comfort to each and every one of you !