Hi Tracy. I just want to see I saw this last night when I couldn't sleep as usual and was deeply touched by you and your husband Philip's story. He's a fighter as are you with your struggle with cancer and the two of you are beautiful inside/out. Thanks for all you do for CRPS patients like me and remembering this sweet little girl. I'm not much older than her at 20 and have had this condition since I was 16 meaning I was diagnosed four years ago too. It has been such a battle but I've tried to not let it stop me even though it's been hard. I've hard practically every treatment imaginable it feels like with the only two things working being my pair of spinal cord stimulators and inpatient pediatric rehab to get my mobility. As I'm getting older I feel I'm at a crossroads and my case is already extremely rare as every doctor I've seen in NY/NJ has told me they've never treated this condition and had a patient with tremors every time they step on the ground. This is what is keeping me from a full recovery and over the summer I underwent calmare therapy that worked well for a month but require booster sessions I'm unsure about. The next step for me is ketamine infusions and I have thought about Dr katinka as a teenager friend of mine on UA-cam just went to Arkansas to see her with limited success. I would love to go but cannot afford it and don't want to burden others with the cost especially if it doesn't work like most things haven't with me. I'm in college and a few years from graduating going to class only a couple times a week with top grades. I've been limited for such a long time but still believe I can fulfill my family and my dreams even if it will take some more time or effort than I previously thought before my left thigh started burning with CRPS!
P Jones Would you be open to having a conversation with Philip my husband? Who was your friend who went to Arkansas? Please friend us on FB and let’s see if we can help or at least give u hope
I hope things keep working out for you. *Sigh* Things are not working for me. I can only choose with my own volition, my free will, that there is hope , but I don't feel it anymore. Too many disappointments and far too much burning, stabbing stinging, crushing pain and too little sleep has just about took away all my strength to even try anymore though I too am a Christian believer I'm sorry but too many issues flying at me, so much pain and the scariest part is the CRPS is getting worse fast. I am only a man and I have a limit to how much I can take.
I have it myself for 3 years now.. I have not taken a single medication or therapy, I started to do intense exercise and pushed through the pain everyday, everything that w pop uld hurt a towel a blanket a pair or Jean's I would use it over n over it would make me be in tears everyday but I kept doing it over n over it has spread all over my body but I still fight through and can pretty much do everything now and have days where I barely feel it. Say fuck you and take it head on.
Hi Tracy. I just want to see I saw this last night when I couldn't sleep as usual and was deeply touched by you and your husband Philip's story. He's a fighter as are you with your struggle with cancer and the two of you are beautiful inside/out. Thanks for all you do for CRPS patients like me and remembering this sweet little girl. I'm not much older than her at 20 and have had this condition since I was 16 meaning I was diagnosed four years ago too. It has been such a battle but I've tried to not let it stop me even though it's been hard. I've hard practically every treatment imaginable it feels like with the only two things working being my pair of spinal cord stimulators and inpatient pediatric rehab to get my mobility. As I'm getting older I feel I'm at a crossroads and my case is already extremely rare as every doctor I've seen in NY/NJ has told me they've never treated this condition and had a patient with tremors every time they step on the ground. This is what is keeping me from a full recovery and over the summer I underwent calmare therapy that worked well for a month but require booster sessions I'm unsure about. The next step for me is ketamine infusions and I have thought about Dr katinka as a teenager friend of mine on UA-cam just went to Arkansas to see her with limited success. I would love to go but cannot afford it and don't want to burden others with the cost especially if it doesn't work like most things haven't with me. I'm in college and a few years from graduating going to class only a couple times a week with top grades. I've been limited for such a long time but still believe I can fulfill my family and my dreams even if it will take some more time or effort than I previously thought before my left thigh started burning with CRPS!
P Jones
Would you be open to having a conversation with Philip my husband? Who was your friend who went to Arkansas?
Please friend us on FB and let’s see if we can help or at least give u hope
I hope things keep working out for you. *Sigh* Things are not working for me. I can only choose with my own volition, my free will, that there is hope , but I don't feel it anymore. Too many disappointments and far too much burning, stabbing stinging, crushing pain and too little sleep has just about took away all my strength to even try anymore though I too am a Christian believer I'm sorry but too many issues flying at me, so much pain and the scariest part is the CRPS is getting worse fast. I am only a man and I have a limit to how much I can take.
Tony Lytle can you send me your contact information to philip@burninglimb.com
So sorry to hear you are struggling Tony. What have you tried for treatments?
I have it myself for 3 years now.. I have not taken a single medication or therapy, I started to do intense exercise and pushed through the pain everyday, everything that w pop uld hurt a towel a blanket a pair or Jean's I would use it over n over it would make me be in tears everyday but I kept doing it over n over it has spread all over my body but I still fight through and can pretty much do everything now and have days where I barely feel it. Say fuck you and take it head on.