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[QUOTE=dianne04;3899445]Hello all , This condition is certainly frustrating. Trying to figure out medications...it stinks. I'm rather new to this. I have had symptoms for about 6 months, but finally got a dx. a few weeks ago. I just had my follow up visit at Cleveland Clinic to discuss my prognosis. Mine is idiopathic, which is a little un-nerving because you don't know what's lurking in your body and is it going to get worse? My Neurologist said in most cases, if it worsens...it is very slow. I also asked him were any of the standard Meds stopping any process? He said "No", so for me , at least for now, I'm going to try to to without. Except at bedtime, sleeping is really difficult (does any one else have Insomina?) My Neurologist said it's not related, nor is the ringing in my ears. Funny because all these symptoms manifested during this time. I'm going to try to go Gluten-Free, although I tested negative for Celiac. And cut out sugars ( My GTT was fine too) He also said "No" alcohol, which is a bummer, because I do like my glass of wine with dinner. I had one more question to ask, has any of you fellow sufferers used Aldara Cream. It is for skin cancer, which i was being treated for when my symptoms started. I found some correlations, but of course I can not prove it. But, if you ever have the option of using this cream. I would said please reconsider, and research it first. I was naive and went along with my doctor reccomended. I may never know, but it's certainly upseting to think an ointment caused this. That's all for now. I really find all the information I read quite helpful, and to know there are others. It's strange, because we don't look sick, but inside the burning goes on and on.[Hello, I have SFN. Was provided with the name after years of not know what was hurting me inside. I have burning in my legs, feet, back and chest that neve goes away. It feels like someone has droped liquid hot acid into my system...it's a deep burning pain that permeates through my entire body. What does your burning sensation feel like and what areas of your body does it impact? Thanks JJM0019 aka Jason:) ]
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 fiancé 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 fiancé 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 fiancé 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 fiancé 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.
Carol - thanks for the post. My mother was diagnosis with Breast Cancer 3 weeks ago. It was a huge shock to me and our family. They caught the cancer very early and we're optimistic that she will be okay. Regardless it was very hard for me to deal with at first because of the stigma attached to the word "cancer" and because of all the potential "unknowns" of the disease. We keep getting more educated about breast cancer and it seems like there are a lot of different options for people fighting the disease. Thanks also Will and Carol for concern and comments regarding the SFN.

Dianne - in your post below you talked about it's really better when fear and anxiety don't take hold. I suffer from a lot of anxiety because of my pain. What do you do to try and relive some of the anxiety you feel? I struggle with it everyday.

Bobby - thank you also for your comments, my heart does go out to you. The punch biopsy's are painless. The doctor will numb the skin with a small injection and then take the skin samples. The entire process is very fast and non-invasive. I understand your fear of another negative result. However, it is very important to definitively put a name with your pain. It's a personal decision to proceed with the test, but it's always better (in my opinion) to know your diagnosis for sure. Regardless of the test result you need to respectfully TELL your doctor you do not want to be taken off the vicodine. If that medicine helps, please convey the importance of continuing it for the sake of your pain and sanity. I fully understand that a lot of doctors do not listen, but in your case please do your best to make him/her hear what you're trying to say. I would be beside myself if I didn't have access to pain meds. As I said in my first post, I don't know how I lived for so long without them.

I admire the fact that you continue to stay strong despite all the painful ailments. It's not easy, especially when you don't have the support system at home to lean on. I can tell by your story that you're not lazy or grouchy on purpose, but it's because you're in pain. I know this because I get the same way. People who are not in pain don't understand the amount of physical and emotional energy it takes to live with pain every day. It's not easy and I truly empathize with you. You are doing the right thing for your children's sake even if they don't believe you. They still need a mother that is there for them even if it's not 100%. As they get older they will understand and appreciate everything you did (and currently do) for them.
The situation with your husband is a hard one. It's appalling to me that he would treat you like that knowing your in pain. You may want to consider doing the biopsy's so you can show him there is a real diagnosis/disease that has caused you to change. I don't know him or you really, so I don't know if a positive test would help. But it's clear to me that nobody deserves to be treated like that. All I can say is speak up for yourself. Do not allow yourself to be verbally attacked by anyone in your family. You know how you feel and everyone should try and be considerate. Do you have good insurance? If so, I would recommend going to see a pain psychologist. I've been seeing one for 3 months and it is starting to help with the emotional aspect of my pain. Unfortunately it hasn't helped me at all on with physical symptoms, but I also don't expect a magic cure. I realize it's going to take a lot of time and effort to feel better. I'm also trying to come to terms that I may never be completely pain free. Living like this forever is a scary thought, but it may be a reality unless the medicinal professionals can find a cure. Given what you've said on this forum I think you may be able to benefit from talking to someone who has professional experience helping people like us. It would be another good support system, and maybe he/she could give you advice on how to get your family and husband to provide the support you deserve.
It is amazing how similar your symptoms are to mine. I too have many different areas of pain. As I stated below the most sever is in the lower abdominal/bladder region along with my back and chest. Like you said, the pain comes in "waves" of heat and fire. It just burns and burns like no other and I want to jump out of my skin. Luckily I don't get any pain in my hands. However, I have a strong burning/cold sensation in my feet that never goes away. It is very uncomfortable but I can still walk and run like I used to, so I'm grateful for that. My ears will also get very red and burn something crazy(this happens a few times a week). Does this ever happen to anyone else? Thank you for sharing your symptoms with me Bobby - it most certainly sound like SFN.
Besides medicine, is there anything else that helps reduce anyone's symptoms? Does anyone notice a change with SFN intensity in cold or hot weather? Does anyone's body react differently to alcohol than before you were diagnosis? For me I've noticed that a really hot shower or hot tub will help relax my symptoms temporarily. Nothing takes it away completely however. I've also noticed that cold weather really causes the SFN to get worse. I have found that a warmer climate does help to calm the symptoms. Then again, there are days hot or cold that my body goes absolutely nuts, so who knows if weather is actually a factor. It's just an observation after years of dealing with the disease.
Boddy, please keep fighting to get a diagnosis and trying to feel better. Believe me that I understand all your pain, frustration, fear and loneliness. It may be a good idea to get the biopsy's because you'll know once and for all. Regardless, I am here to talk with you, as well as everyone else on this forum, so you are not completely alone. I check the entries everyday. Do not apologize for "letting lose." Say what you have to say and get it off your chest. I completely understand everything you're saying. I'm lucky to have people around me who care and show support. However, because I kept my pain internalized for so many years I also know what it feels like to be completely alone in this fight. You have us Bobby Flay and I hope that helps ease your mind and the pain just a little bit.

Regards,

Jason
[QUOTE=jjm0019;3916931]Carol - thanks for the post. My mother was diagnosis with Breast Cancer 3 weeks ago. It was a huge shock to me and our family. They caught the cancer very early and we're optimistic that she will be okay. Regardless it was very hard for me to deal with at first because of the stigma attached to the word "cancer" and because of all the potential "unknowns" of the disease. We keep getting more educated about breast cancer and it seems like there are a lot of different options for people fighting the disease. Thanks also Will and Carol for concern and comments regarding the SFN.

Dianne - in your post below you talked about it's really better when fear and anxiety don't take hold. I suffer from a lot of anxiety because of my pain. What do you do to try and relive some of the anxiety you feel? I struggle with it everyday.

Bobby - thank you also for your comments, my heart does go out to you. The punch biopsy's are painless. The doctor will numb the skin with a small injection and then take the skin samples. The entire process is very fast and non-invasive. I understand your fear of another negative result. However, it is very important to definitively put a name with your pain. It's a personal decision to proceed with the test, but it's always better (in my opinion) to know your diagnosis for sure. Regardless of the test result you need to respectfully TELL your doctor you do not want to be taken off the vicodine. If that medicine helps, please convey the importance of continuing it for the sake of your pain and sanity. I fully understand that a lot of doctors do not listen, but in your case please do your best to make him/her hear what you're trying to say. I would be beside myself if I didn't have access to pain meds. As I said in my first post, I don't know how I lived for so long without them.

I admire the fact that you continue to stay strong despite all the painful ailments. It's not easy, especially when you don't have the support system at home to lean on. I can tell by your story that you're not lazy or grouchy on purpose, but it's because you're in pain. I know this because I get the same way. People who are not in pain don't understand the amount of physical and emotional energy it takes to live with pain every day. It's not easy and I truly empathize with you. You are doing the right thing for your children's sake even if they don't believe you. They still need a mother that is there for them even if it's not 100%. As they get older they will understand and appreciate everything you did (and currently do) for them.
The situation with your husband is a hard one. It's appalling to me that he would treat you like that knowing your in pain. You may want to consider doing the biopsy's so you can show him there is a real diagnosis/disease that has caused you to change. I don't know him or you really, so I don't know if a positive test would help. But it's clear to me that nobody deserves to be treated like that. All I can say is speak up for yourself. Do not allow yourself to be verbally attacked by anyone in your family. You know how you feel and everyone should try and be considerate. Do you have good insurance? If so, I would recommend going to see a pain psychologist. I've been seeing one for 3 months and it is starting to help with the emotional aspect of my pain. Unfortunately it hasn't helped me at all on with physical symptoms, but I also don't expect a magic cure. I realize it's going to take a lot of time and effort to feel better. I'm also trying to come to terms that I may never be completely pain free. Living like this forever is a scary thought, but it may be a reality unless the medicinal professionals can find a cure. Given what you've said on this forum I think you may be able to benefit from talking to someone who has professional experience helping people like us. It would be another good support system, and maybe he/she could give you advice on how to get your family and husband to provide the support you deserve.
It is amazing how similar your symptoms are to mine. I too have many different areas of pain. As I stated below the most sever is in the lower abdominal/bladder region along with my back and chest. Like you said, the pain comes in "waves" of heat and fire. It just burns and burns like no other and I want to jump out of my skin. Luckily I don't get any pain in my hands. However, I have a strong burning/cold sensation in my feet that never goes away. It is very uncomfortable but I can still walk and run like I used to, so I'm grateful for that. My ears will also get very red and burn something crazy(this happens a few times a week). Does this ever happen to anyone else? Thank you for sharing your symptoms with me Bobby - it most certainly sound like SFN.
Besides medicine, is there anything else that helps reduce anyone's symptoms? Does anyone notice a change with SFN intensity in cold or hot weather? Does anyone's body react differently to alcohol than before you were diagnosis? For me I've noticed that a really hot shower or hot tub will help relax my symptoms temporarily. Nothing takes it away completely however. I've also noticed that cold weather really causes the SFN to get worse. I have found that a warmer climate does help to calm the symptoms. Then again, there are days hot or cold that my body goes absolutely nuts, so who knows if weather is actually a factor. It's just an observation after years of dealing with the disease.
Boddy, please keep fighting to get a diagnosis and trying to feel better. Believe me that I understand all your pain, frustration, fear and loneliness. It may be a good idea to get the biopsy's because you'll know once and for all. Regardless, I am here to talk with you, as well as everyone else on this forum, so you are not completely alone. I check the entries everyday. Do not apologize for "letting lose." Say what you have to say and get it off your chest. I completely understand everything you're saying. I'm lucky to have people around me who care and show support. However, because I kept my pain internalized for so many years I also know what it feels like to be completely alone in this fight. You have us Bobby Flay and I hope that helps ease your mind and the pain just a little bit.

Regards,

Jason[/QUOTE]

Good advice Jason, thanks for your caring letter. Let me know how the neuro psych turns out because my neuro shares his office with one and I think somebody else mentioned that they are going to the pain clinic and I would be very interested to see how that comes out. I did request for my neuro to send me to a pain clinic, they have one in my hospital, and he blew me off. I carry my entire family on my insurance from my work and since I am an RN and work for the hospital, I have really good insurance as long as I stick with the docs from my hospital and so that really puts a damper on a lot of things. My daughter has Irritable Bowel Syndrome and Urinary Reflux. We had to see a couple specialist in Indianapolis for testing and medications. I got stuck with a $5,000 bill from Indy because they were not in my PPO. With the economy the way that it is, I just can't afford another bill like that. I want to ask him for the skin puncture but, if he doesn't do it, I just can't afford it. I am also, like I said earlier, afraid of another negative test, he already thinks I am crazy like it is. Once, he sat in front of me with his tape recorder and dictated my history, right in front of me, saying how "the patient describes pain in.... however, negative tests indicate that...." and that she is crazy, in so many words. I felt like a small seed sitting there while he did that.





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