Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-10-2015, 05:11 PM #1
stillsmiling stillsmiling is offline
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Join Date: Jul 2014
Posts: 101
8 yr Member
stillsmiling stillsmiling is offline
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Join Date: Jul 2014
Posts: 101
8 yr Member
Default Hi everyone

My name is Jen. I am 36 years old. I live near Gainesville FL. I was finally diagnosed with RSD in July 2014, but have had all the symptoms for 7 years. It has spread throughout my entire body. I have several seizures a day. I have four beautiful children and a loving husband of almost 15 years. I am confined to my bed or chair. I am unable to take care of my basic needs. I have been searching for a doctor that doesn't treat me like a pain pill seeking addict. I take 1,800 mgs of Gabapentin for the seizures daily along with 50mg Zoloft for the depression that has come with this illness. I also take two 10mg percocet a day. I also take 1mg Klonopin three times a day for the severe spasms. This is how I do it, and I am so anxious to hear any thoughts of how I could do this differently. In the mornings I am unable to move. My husband sets an alarm for 5:30 am and gives me one gabapentin, one klonopin, and one percocet. He makes me a light breakfast so I don't take all of that on an empty stomach. I then put on a playlist of peaceful music to listen to as he rubs my back, hands, feet, arms leg, whatever area is hurting particularly bad. At 6:15 once my medicine has taken the edge off my pain he wakes up our 4 children for school. I take my medicine that early so they can see the best me they can see (one not crying in pain.) He helps the kids get off to school, and he leaves for work. I have a very large extended family and a large church family who by 7:30am start taking shifts with me because I have seizures and often have a very hard time breathing. I can't move around at all. I try to listen to uplifting messages and music, and I try to be as optimistic as possible throughout the day. I try to have gratitude because I realize how fortunate and blessed I am. By 11:30 my pain meds have worn off and I am near tears in pain. I hold off taking my other percocet until 1:45 so I can be in the best shape I can be for the children when they get off the bus at 3:15. The problem is the pain comes back with a vengence and by the evening I am toast. I go to bed early exhausted from the days pain. I have tried splitting the percocet in half, but is useless. Does anyone have any thoughts on other ways of Pain Management? Thanks in advance
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