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Hello All,

I have been dealing with chronic pain since I was 18 years old. I'm 31 now and was recently diagnosis with SFN. To give some back ground (and I'll try my best to keep it brief) I literally went to bed one night in the summer of 1996 feeling fine and work up the next day in pain. It started by 'weird sensations' in my body like cold feet and tingling in my legs. Eventually it morphed into serious pain throughout my entire body. I saw many doctors and was referred to every single specialist that a person can imagine. I had many tests run and all of them came back negative. This was back in 1996 when I was a senior in high school. I was young, scared and had no clue what was happening to my body. Most of the doctors were rude and would rush me out of their office. I remember specifically one doctor telling me, "You are too young to have all these problems and there is no way you can feel all the pain described. The pain is all in your head. Grow up, be a man, quit thinking about it and you'll be fine." I got so discouraged by all my test results coming back negative and the attitude of doctors towards me, that I gave up on trying to find a diagnosis and just lived my life the best I could with the pain, burning, tingling, metal stress and fatigue that comes with this disease. At the time though, I still had no idea what was wrong with me. I never told anyone about my pain except for my mother. I felt like I was living a double life. On the surface I was a friend, brother, co-worker, team mate, etc. On the inside, I was very depressed, fearful and in constant pain. Despite the disease, I was still able to build a decent live for myself. I have a great job, family and a fiancÚ that is a complete angel. Over the years I thought about making the rounds again with doctors. However, I didn't think I was prepared for another round of negative results and non-attentive doctors. Therefore, I continued to put off trying to figure out what was wrong with me...and continued to live with the pain. Then 3 months ago my fiancÚ and I were talking about my pain (she's the 2nd person I confided in about my pain) and she asked me a very simple question that got me thinking about trying to feel better again. She said, "how do you think your life would improve if you were pain free?" It's funny because I never thought about how much better my life would be without pain, because I've spent so much time trying to figure out how to manage my life with it. That night I wrote a 5 page letter detailing history of my pain, symptoms, and what I wanted from my doctor. Then I started "hitting the circuit" of doctors again. All of which I made read my letter before I attended the appointment. The letter was my way of making doctors listen to my story. Without it they were to busy or not concerned enough to listen. There were a couple of doctors that didn't read it before the appoitment and I refused to speak with them until they did. An already long story short...I went to a pain clinic, the doctor read my letter, and took a keen interest in helping me. He prescribed me Cymbalta and 10/325 strength Norco or another form of Vicodine. The pain meds help a lot. At this point I don't see how I lived my life without them for so many years. I feel blessed to have found a drug that takes the edge off my pain. Until I started taking them, I always felt like jumping out of my skin. It doesn't take the pain away completely by any means, but some relief is better than none with this disease! The pain clinic doctor also had me see numerous specialists. Each one did numerous tests (again) and everything came back negative (again). Then my neurologist ordered a couple punch biopsy's, one on my ankle and the other at the top of my thigh. Both came back positive for SFN. This was 3 weeks ago and I was shocked. I couldn't believe that after all these years a positive diagnosis was found that helped to explain most of my symptoms. My doctor ordered additional blood work after the positive diagnosis which I will get the results on tomorrow. I assuming the cause of the SFN will be idiopathic, but who knows, maybe there is an underlying problem that the doctors can cure.
I've also been seeing a pain psychologist once a week. Because I kept my pain internalized for so many years, it is really helping to talk about it more openly. She teaching me not to be embarrassed about my pain and not to think of any less of myself as a result. For years I've felt so abnormal and unhealthy because of my pain and I never thought about discussing it with anyone. I recommend talking to a professional for anyone that is struggling with the pain and has no one to talk to. It does help.
I can relate to so much of what's been said on this medical blog. I have cold and tingling feet. My legs also have a cold/burning sensation that runs throughout them. The most sever part of my pain though is in my lower abdominals, back, and chest. It literally feels like my body is on fire. Like someone has dropped liquid acid into my body and it's burning from the inside out. Cold weather doesn't help. It actually feels like the condition gets worse when the weather is chilly. Luckily for me I live in San Diego so I don't have to deal with the sever cold. Regardless, winters are less fun for me in this city. I am very tired all the time and the thought of doing anything outside of my normal routine is very challenging for me. I always need to have my pain meds with me in order to function at a "normal level." As I stated above, I'm very happy to have them but I'm also finding that I'm starting to rely on them far too much. It's scary because I know they're bad for the body. After years of pain however, I tend not to care right now. I'm just happy for some relief. Do any of you feel like you've been hit by a truck when you wake up in the morning? Along with the burning/cold/tingling, my skeleton (with emphasis) on my spine hurts so much. I'm just wondering if any of you feel the same way? I can relate to so many of the stories on this blog...the pain, loneliness, and fear of what the future brings. I'm 31 now and you would NEVER know by looking at me how much pain I feel inside. I'm very grateful to have found this blog. Just knowing there are other people out there who are battling this disease, and can show support is very comforting. It's nice to know there is a forum where we can lean on each other and I look forward to engaging in conversation with all of you.

I apologize for writing so much. I promise to keep it brief going forward. I just feel such a need to continue getting this off my chest. Thanks so much to everyone for taking the time to read my story and hopefully provide response.

Thank you!

Regards,

Jason
[QUOTE=jjm0019;3914279]Hello All,

I have been dealing with chronic pain since I was 18 years old. I'm 31 now and was recently diagnosis with SFN. To give some back ground (and I'll try my best to keep it brief) I literally went to bed one night in the summer of 1996 feeling fine and work up the next day in pain. It started by 'weird sensations' in my body like cold feet and tingling in my legs. Eventually it morphed into serious pain throughout my entire body. I saw many doctors and was referred to every single specialist that a person can imagine. I had many tests run and all of them came back negative. This was back in 1996 when I was a senior in high school. I was young, scared and had no clue what was happening to my body. Most of the doctors were rude and would rush me out of their office. I remember specifically one doctor telling me, "You are too young to have all these problems and there is no way you can feel all the pain described. The pain is all in your head. Grow up, be a man, quit thinking about it and you'll be fine." I got so discouraged by all my test results coming back negative and the attitude of doctors towards me, that I gave up on trying to find a diagnosis and just lived my life the best I could with the pain, burning, tingling, metal stress and fatigue that comes with this disease. At the time though, I still had no idea what was wrong with me. I never told anyone about my pain except for my mother. I felt like I was living a double life. On the surface I was a friend, brother, co-worker, team mate, etc. On the inside, I was very depressed, fearful and in constant pain. Despite the disease, I was still able to build a decent live for myself. I have a great job, family and a fiancÚ that is a complete angel. Over the years I thought about making the rounds again with doctors. However, I didn't think I was prepared for another round of negative results and non-attentive doctors. Therefore, I continued to put off trying to figure out what was wrong with me...and continued to live with the pain. Then 3 months ago my fiancÚ and I were talking about my pain (she's the 2nd person I confided in about my pain) and she asked me a very simple question that got me thinking about trying to feel better again. She said, "how do you think your life would improve if you were pain free?" It's funny because I never thought about how much better my life would be without pain, because I've spent so much time trying to figure out how to manage my life with it. That night I wrote a 5 page letter detailing history of my pain, symptoms, and what I wanted from my doctor. Then I started "hitting the circuit" of doctors again. All of which I made read my letter before I attended the appointment. The letter was my way of making doctors listen to my story. Without it they were to busy or not concerned enough to listen. There were a couple of doctors that didn't read it before the appoitment and I refused to speak with them until they did. An already long story short...I went to a pain clinic, the doctor read my letter, and took a keen interest in helping me. He prescribed me Cymbalta and 10/325 strength Norco or another form of Vicodine. The pain meds help a lot. At this point I don't see how I lived my life without them for so many years. I feel blessed to have found a drug that takes the edge off my pain. Until I started taking them, I always felt like jumping out of my skin. It doesn't take the pain away completely by any means, but some relief is better than none with this disease! The pain clinic doctor also had me see numerous specialists. Each one did numerous tests (again) and everything came back negative (again). Then my neurologist ordered a couple punch biopsy's, one on my ankle and the other at the top of my thigh. Both came back positive for SFN. This was 3 weeks ago and I was shocked. I couldn't believe that after all these years a positive diagnosis was found that helped to explain most of my symptoms. My doctor ordered additional blood work after the positive diagnosis which I will get the results on tomorrow. I assuming the cause of the SFN will be idiopathic, but who knows, maybe there is an underlying problem that the doctors can cure.
I've also been seeing a pain psychologist once a week. Because I kept my pain internalized for so many years, it is really helping to talk about it more openly. She teaching me not to be embarrassed about my pain and not to think of any less of myself as a result. For years I've felt so abnormal and unhealthy because of my pain and I never thought about discussing it with anyone. I recommend talking to a professional for anyone that is struggling with the pain and has no one to talk to. It does help.
I can relate to so much of what's been said on this medical blog. I have cold and tingling feet. My legs also have a cold/burning sensation that runs throughout them. The most sever part of my pain though is in my lower abdominals, back, and chest. It literally feels like my body is on fire. Like someone has dropped liquid acid into my body and it's burning from the inside out. Cold weather doesn't help. It actually feels like the condition gets worse when the weather is chilly. Luckily for me I live in San Diego so I don't have to deal with the sever cold. Regardless, winters are less fun for me in this city. I am very tired all the time and the thought of doing anything outside of my normal routine is very challenging for me. I always need to have my pain meds with me in order to function at a "normal level." As I stated above, I'm very happy to have them but I'm also finding that I'm starting to rely on them far too much. It's scary because I know they're bad for the body. After years of pain however, I tend not to care right now. I'm just happy for some relief. Do any of you feel like you've been hit by a truck when you wake up in the morning? Along with the burning/cold/tingling, my skeleton (with emphasis) on my spine hurts so much. I'm just wondering if any of you feel the same way? I can relate to so many of the stories on this blog...the pain, loneliness, and fear of what the future brings. I'm 31 now and you would NEVER know by looking at me how much pain I feel inside. I'm very grateful to have found this blog. Just knowing there are other people out there who are battling this disease, and can show support is very comforting. It's nice to know there is a forum where we can lean on each other and I look forward to engaging in conversation with all of you.

I apologize for writing so much. I promise to keep it brief going forward. I just feel such a need to continue getting this off my chest. Thanks so much to everyone for taking the time to read my story and hopefully provide response.

Thank you!

Regards,

Jason[/QUOTE]

Thank you for your courage and for writing this letter. I joined this forum on a few days ago and up until then I have felt guilty for feeling pain, lonely and crazy. I don't feel so alone anymore and to me that is huge. I am so glad that you have someone who believes in you and supports you. Don't let her go, she is a keeper.





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