Chronic Pain/ Disability

 I was born with amniotic band syndrome which happens when a baby becomes tangled with amniotic bands in the uterus. In my case, the bands were wrapped around my right hand and both feet, which caused these areas to grow the wrong way. My right hand is missing fingers and my feet are clubbed with the left foot being more severe. Fast forward 30 years and over 20 surgeries and this is where I am today. I live with chronic pain to my hand and feet which limits my life and what I do. 10 years ago, I was diagnosed with RSD (now called CRPS). The crps was caused by the surgeries that I thought would fix me. The surgeries have helped me to walk better but they caused a whole new set of problems. The crps causes me to feel like my hand and left foot are constantly on fire. Over the years, hair has stopped growing on these areas and the skin has turned a shiny, blotchy, purple. Going in for nerve blocks, I found out that my left foot is constantly 4-6 degrees colder than the rest of my body which is from the crps. I am 30 and married. A year after our marriage, we seperated due to how my pain affected my mood. I was depressed and still am- that's what constant pain does to you. My husband left me for a month and then we got back together and I've since needed to learn to deal with my mood better but my pain has gotten much worse. No one ever prepared me for the hell I deal with on a daily basis. Growing up, doctors told me that I would have back problems and some foot pain but that I would live a normal life. I suffered through all the surgeries and teasing alone with the hope that someday it would be better. But it's not. No one my age understands me and so I dobn't really have any friends. I've tried to let people in but when they find out about my pain and how it limits my activities they get scared away. This life is not meant for someone like me. I read yesterday that crps has a suicide rate of 73-85% and that it's the most painful condition out there. Before anyone think I'm going to kill myself I will say that it's not going to happen. My fear of my husband and my parents without me is what stops me so I would never do it. It would be too easy of a way out. I feel as though I'm going to have a nervous breakdown on a daily basis from the pain. Shrinks don't help me. People are scared of me and ignore me. I have been medicated for the past 15 years for pain with narcotics and it makes my mind unclear but I can't live without the drugs- I wouldn't be able to get out of bed. I am on disability (have been for 5 years now) and not working has been very hard. I go to college to finish up my degree and it's the only thing that has kept me sane. I feel like I'm slowly dying and theres nothing I can do about it. Whenever I think that there's no way that my pain could get worse, it does and there's nothing I can do to stop it. I have a large family who ignores me because they see that I have no job and am miserable and it scares them. My husband is the only one who understands me. This is my first post (more like an angry vent) and I'm trying to connect with others who can understand me because I don't know anyone my age who has these problems. Thanks for listening.    

chewy79 chewy79
2 Responses Mar 4, 2010

Thanks everyone for listening :) I'm sad that others also have pain issues but at the same time, it feels good to know that I'm not alone. I also smoke marijuana for pain relief and it can be very effective as long as you find the right kind (make sure to not get what will induce paranoia as this can make your symptoms feel worse). It's much healthier than the narcotics. I live in a state where it's still not legal but I'm hopeful that it will be in the future- it's natural and safe and if it helps with pain then whoever wants to use it should be able to.

Glad to hear you got your husband back, and still have a family. All this is extremely important to your mental health, so do not abuse it, they have feelings too. Recently, I have been checking out the marijuana issue and legality. Marijuana is not a pain killer, but it does cause the mind to slow down the thought of hurting, check it out. In California it is legal. I am not sure where else. Also, I found out that those that sell the stuff make about $10,000 a year. If you need a source of income, here is a new venture. I do not smoke the stuff myself, or sell it, but I will consider selling it one day.