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    Old 05-28-2009, 11:23 AM   #16
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    Re: your posts lets me know I am not crazy

    Hello All,

    As usual it is great to see everyone posting on this message board. I'm glad we can all be here for each other by providing our stories and offering advice.

    Vermont Girl - I too have burning in the groin area. It's been there since the onset of the SFN years ago. It starts in my stomach and low back area and just funnels down into the groin. I also have the symptoms in my legs, feet, back and chest. It is a deep burning that just feels like it's eating your insides away. I can totally relate to your symptoms. It's crazy how this SFN works. It just wrecks havoc on our entire body. The only reason I'm sharing this is so you know there are other people out there that have the same symptoms as you. Knowing you're not alone always helps cope with the pain.

    Until recently there were only two people that really knew how much pain I was in. It wasn't something I was comfortable talking about to family members, friends, or co-workers. In fact, I was down right embarrassed and ashamed to discuss it. I think it had a lot to do with a lack of a diagnosis. I didn't know what was wrong with me for over 10 years. Maybe the doctors were right? Was I just going crazy and manifesting all the pain in my head? Then I go to some neurologist who suggests we do a punch biopsy to test for SFN. A week later the results are back and I test positive for SFN. I was utterly shocked. The diagnosis explains 95% of the pain I feel. The burning, cold, hot, tingling, and fatigue...everything. This was a few months ago, and for me, the diagnosis was everything. With the help of a pain physiologist, I can now talk to my friends, my family, and my fiancť without feeling embarrassed because I have a diagnosis that explains my symptoms. I'm not just 'the guy in pain but doesn't know why' anymore and that makes it easier to talk about. People can relate to a diagnosis a lot easier than unexplained pain.

    I can talk to doctors now and not feel like they think I'm crazy, or that I need to talk with a shrink for some childhood trauma that doesn't exist. I can ask for medicine without being labeled a "pill seeker or drug addict.' Both labels I was given by many doctors during my journey for a diagnosis. Most of all however, I know what is wrong with me, and that allows me to cope a lot better. Vermont Girl, I understand what it's like, 'not to lead a normal life.' It's scary being in pain all the time, and it takes a huge toll on everyday life. It's tiring, depressing, and severely dishearting suffering with SFN. I feel for you and everyone else that has this disease and ask that you don't ever give up on yourself in your quest to feel better. There may not be a cure for this disease, but there are medicines out there that ease our pain.

    I guess we just need to keep fighting for ourselves. Keep working with our doctors to find the right treatment and mixture of medicines to get us back on track. Right now I'm very content with how my doctors are treating my SFN. I feel better. Granted, I'm on drugs all day, but I can function with no problems. I can accept being on med's all day. Without them, and a diagnosis, my life would still be a nightmare. I lived my life for 11 years in tremendous pain and I refuse to ever go back!!!

    Daisy - I too have an understanding Fiancť which makes all the difference in the world when taking meds that impact your libido. I'm very happy to hear your husband is a supportive person and that he treats you nice and with respect. I've read so many times on these message boards about a persons spouse treating them like crap because they're in pain. That's total bullcrap if you ask me. If your significant other and friends love you, they should be there for you no matter what!

    Keep looking for a new pain clinic. That is crazy that it takes a year to be seen. What area do you live in? Maybe we can work together to help you find a clinic you can get into faster? There is no excuse to start at square one again. I would recommend getting all your medical reports together and demand that your GP find you a place to be seen. It makes me so mad when I hear about doctors dropping patients and not giving them the treatment we deserve. It's that attitude that made me stop seeing doctors in my late teens...and as a result I lived in total pain, with no treatment, for so many years. Please go back to your doctor and TELL THEM what you want done. We are paying them to help us, which doesn't include giving their patients the 'brush off.' If I can make one recommendation, write a letter. Detail why you're writing it, your medical history, pain symptoms, and what you want from the doctor that treats you. I got so frustrated trying to talk with doctors. They don't give you more than 1 minute to speak and quickly jump to conclusions with some crappy diagnosis. That's when I decided to write a letter, and I would not allow a doctor to see me until they read the entire thing. In fact, I would ask them questions about the letter at the beginning of my appointment just to make sure they took the time to read it. If they didn't I'd refuse to talk with them until they did. As patients we have to remember that we're priority number 1. Doctors lose focus of that concept and it is our job to bring them back to reality.

    If you do have to start all over (while I think that sucks) be it. But do it different this time. Go into these doctor's offices with a determination to get the treatment you deserve. Write the letter, make them read it, and tell the doctors what meds have worked for you, and how you want them to treat your pain. In fact, I'll consider posting the letter I wrote just so you can see what I'm talking about.

    Sorry for the rant all, as you can see I'm very passionate about my situation and that of others as it pertains to SFN. I pray that all of you get the treatment and love you deserve.

    More to come later.


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    Old 05-28-2009, 11:55 AM   #17
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    Re: your posts lets me know I am not crazy

    Per my previous post I said I'd think about posting the letter I wrote. It is important to note that when this letter was written I still had no idea what was wrong with me. I had never heard of SFN and I wasn't convinced there was a doctor out there that could help me. After the letter was completed I felt very proud of myself for taking this first step towards getting better. I also felt like I had some ammunition to force my future doctors to hear me before seeing me in their office for the first time. This letter was my voice and I felt it was so important for any doctor to read it before seeing me. I re-read this letter before posting it on this forum and it brings back a lot of painful memories. I wrote it at a time when my pain was literally at it's worst and I had lost all hope that I would ever feel better. Now, 8 months later I have found a great team of doctors who care about me and want to see me get better. They are treating my pain symptoms and I feel like there is a new life waiting for me in the future. I realize I haven't been cured and there is still a long road ahead batting SFN...however for now, I'm proud of myself for how far I've come since writing this letter, and I'm happy with how my body feels today. There is hope for all of us, and I pray we all find the treatment we deserve. There is hope for all of us, and I pray we all find the treatment we deserve. If this letter helps you in anyway and/or gives you a new tactic to use with these stubborn doctors, then I'm truly grateful that I decided to share it with all of you.


    To Whom it May Concern:

    I am in your office today and write this letter because I need help. I write this letter because itís important the doctor treating me understand my pain. It would be difficult for me to visit your office and try to explain my pain in a short period of time, given the many years I have endured it. I write this letter because I do not want to leave anything out and because I find it easier to explain in words why Iím here today and the extent of my pain. In this letter I am going to provide brief history of my pain, the symptoms I feel, what I do to manage my pain, and what I am hoping for from my doctor.

    I suffer from chronic back and body pain. My body has been consumed with chronic pain since I was a junior in high school. It is difficult to place a trigging event may have caused it, but I did and always have played a great deal of sports. I deal with chronic pain every day and night of my life. It impacts my mood, my ability to sleep well, what I can and canít do physically, and it has reached a point where it is impacting who I am as a person. It is hard for me to truly enjoy anything because I canít participate freely without constant pain. My pain is a relentless, and I need to do something about it. While it hasnít been easy, Iíve learned to live with my pain over the years and try to accept what it has become. I feel though, that I can no longer wake up each morning and battle this problem without medical treatment. I ask my self, ďIf I feel this much pain at 31 years old, how am I going to feel in 10 or even 20 more years?Ē Writing this letter is my first significant step in years to take control of my pain and get better. As a man itís difficult to admit that I need help, but I know itís necessary if I ever hope to alleviate my pain, and start feeling better physically and emotionally.

    As I stated above this is the first significant step Iíve taken in years to do something about my pain. When my symptoms first started in high school, I saw many doctors. They ran a multitude of tests that included, blood, urine, x-rays, MRIís, and neurological exams. As the tests came back negative, I became increasingly more frustrated that my pain went undiagnosed. Regardless, my pain continued to thrive and increase over time. The issue I kept running into with doctors was my age (17 and 18 years old at the time). Because of it, there were not many doctors that thought my pain could be real. Many stated that it was ďall in my headĒ which wasnít (and still isnít) true because everything physically hurts. After two years of tests without finding anything wrong, my frustration peaked. I gave up, and accepted that there was nothing more that could be done to make me better. In hindsight I realize that giving up on my body wasnít the right choice. I didnít know what else to do, so I made the choice to live my life while dealing with the pain.

    In the following paragraphs I hope to provide a vivid picture of my pain. I believe the only way to effectively treat my pain is for my doctor to understand how intense and chronic the pain is. I can do a better job of explaining it on paper than verbally, hence the reason for this letter.

    I have severe back pain that never goes away. Over the years it has gotten progressively worse. It has reached a point where I am extremely reluctant to do anything athletic because of my pain. It is important to note that I can still participate in these activities if I choose to, but it makes my pain even worse that night and throughout the following days, therefore Iíve chose to significantly decrease the amount of athletic activities I engage in. It is also difficult to engage in normal day to day activities. I find it hard to sit though dinner or movie due to the pain I constantly feel. It is difficult to get a good night sleep. It is painful to stand for long periods of time. It is painful to sit for long periods of time. It is challenging and painful to exercise on a consistent basis, but I do try because I think itís important.

    The majority of my pain runs straight down my spine, with the emphasis focused between my shoulder blades. It hurts to the touch and when I move or donít move. It literally feels like someone has taken a hammer and pummeled the top and side of each vertebra in my spine until it was injured and deeply bruised. The deep bruising pain on the bone is accompanied with a heat / numbing / tingling pain that makes my entire spine and back feel like itís on fire. It feels like every muscle, nerve, tendon, and bone are working against each other in an effort to educe as much pain as possible on my spine, back and body. While the upper thoracic section of my spine (between my shoulder blades) is the most severe, the pain is not just limited to that region. All the vertebrae from my neck to the lower back hurt and my back always feels like its on fireÖ.whether I sleep, stand, sit, walk, or run, the pain is constant.

    I also get chronic muscle strains in my traps and along my shoulder blades on both sides. I get the strains more consistently in the right trap. They are painful but do go away after a few days of stretching and inactivity. It also feels like my right should blade protrudes more than the left. For example, if I stand against a wall, there is a significant difference between how much the right side sticks out versus the left.

    Over the last three years I have developed the same bruising / burning sensation in the middle of my breast plate. Much like my spine, it feels like someone has hit me with a hammer and bruised the bone between my pectoral muscles. This pain doesnít go away and it has become progressively worse over time. I feel the same burning sensation throughout my chest. Is it possible that whatever is causing the pain in my back is causing the pain in my chest as well?

    My lower abdominals feel a high level of pain as well. Like my back, it too feels like my lower abdominals have been set on fire. The best way for me to describe the sensation is waves and waves of heat that attack my lower extremities. If I had to pin point a location, it would be in the proximity of my bladder, and it spreads throughout my pelvic region, lower back and legs.

    This burning pain is not limited to my back and lower abdominals but also races into my legs, ankles and feet as well. My feet always feel cold but are not cold to the touch. The coldness in my feet is uncomfortable and doesnít go away by putting socks on.

    I would categorize my pain into two areas. Pain I can touch and pain that I canít.

    I can touch my spine and other areas of my back and physically feel pain. I can tilt my head forward or back and feel the pain race down my spine. I can stand or sit completely still and feel the pain eating away at my back. If I do an activity Ė golf for example, I have hard time getting out of bed the next day because Iím in so much pain. Regardless of what I do however, it is important to stress the pain never goes away. It is has reached a point that I have a hard time dealing with it, even when not participating in any athletic activity. Sitting at my desk at work and trying to concentrate for 8 hours has become difficult because of the pain throughout my body and spine. On a side note in regards to work, I have been provide with a very good ergonomic chair and supports for my posture, neither help to reduce my pain.

    I cannot touch the burning sensation I feel throughout my entire back and body. It is hard for me to say what it could be or why it is there, I can only say that my back and body feels like is on fire all the time. There are times when the burning is less intense and other times itís so bad that I want to jump out of my skin. I canít however, explain what factors make it flare up, or slightly subside. This deep penetrating burning pain is enough to make me go nuts. If I had to try and diagnose the burning pain, I would conclude that itís connected to the condition and pain in my spine. However, I do not know for sure.

    I feel tired all the time. Because of my pain there are very few nights that I actually sleep well. On the rare occasion that I do, I do not feel rested. My body is always tired. My mind is always tired. I go to bed at a decent hour and eat pretty well, but my energy is never there. It is difficult to feel refreshed when I wake up to chronic back and body pain. While I may look perfectly healthy on the exterior, the pain I feel on the inside is intense, and my body never feels Ďgoodí and I do not feel healthy.

    Because of my pain I know that I suffer from anxiety. I always think about the pain and I worry it will never go away. It is hard to truly relax when oneís body is always in pain, and itís easy for me to understand why a person with chronic pain could suffer from anxiety. This has been a tough burden to carry for so many years. I know my anxiety will subside when my pain is treated because there is nothing else in my life to worry about. With the exception of my pain, life is pretty good. I think it is important for the doctor treating me to understand that I do have anxiety as a result of my pain. I wouldnít categorize my anxiety as severe, but rather moderately consistent. Thinking about the long term outcome of my pain, and the pain itself, fosters the anxiety because I fear I will never rid it from my body.

    What helps to combat the pain on my spine and the burning sensations I feel throughout my body? The first thing I will say is that nothing comes close to taking away my pain completely. There are things that I do to help reduce and manage it, but these are always short term solutions. First, is an extreme amount of hot water. I will let the shower run on my back and body for an extended period of time, and this helps to provide temporary relief. Nothing I do takes away the deep bruising I feeling in each spinal vertebra. The next thing I do is ice my back every night before bed. While the deep cold helps to provide some relief, it too does not carry any long term solutions. I take over the counter medications such as Tylenol and IB profin, but both provide insignificant relief given the amount of pain Iím in. I ride a stationary bike at the gym, stretch, and exercise a few days a week. I do this because everything I read states that exercise is good for chronic pain. I agree, and do find that I feel some relief during exercise and it also does help to reduce my anxiety, but sometimes it makes my spine, back and body feel worse after the exercise, that night, and the next morning. Therefore, Iím limited to what I can, and will do. Either way, I think itís good for me to exercise because I feel Iím doing something positive for my body. Iíve been seeing a chiropractor and message therapist three times a month for approx a 2 years. The chiropractic doesnít help much, but the message does provide a little temporary relief to my back muscles. Pain medicines help my entire body. Iíve been prescribed pain medications for a shoulder and ankle injury. They did help to significantly provide extended relief on my back and body throughout the day. The end result with all of the aforementioned however, is that they provide some relief that help me get though my day, but in no way do they cure my pain.

    What do I need from my doctor? I need my doctor to examine my body and run me though the various tests. I want everything, inside and out, to be examined and cleared. I want to know that no stone has been left unturned. I want my doctor to be committed to helping me get better. I need my doctor to help me manage and relive my pain from day to day. I need my doctor to help me determine long term solutions to pain reduction. I also need my doctor to really care about trying to help me get better.

    As a patient, what do I promise to do? I give you my word that I will be honest and upfront regarding my pain. I promise to approach each test and treatment with an open mind and positive attitude. I will do everything that is asked of me without question. I promise to be a good patient and listen to my doctorís advice.

    Iíve tried to maintain a positive attitude throughout the years. I have worked hard to build a good life for myself and try to stay in decent physical shape despite my chronic pain. I havenít spoken to many people about my pain and can count on a two fingers the people who know full extent of my pain. All of them ask me to seek medical help and Iíve always resisted. As to ďwhyĒ I resisted, I can only say I have a really hard time talking about it. I consider this pain a weakness and it embarrasses me to talk about with anyone. Whether that is right or wrong, Iím not sure, but thatís the reality of my situation, and thatís how I chose to handle it thus far. I have reached a point however, where I can no longer let the pain consume me and thatís why Iím finally reaching out for medical help.

    Iíve thought about writing this letter for many years, not to you necessarily, but to any doctor that would take the time to read it, and offer his/her medical expertise to help. It wasnít until a recent conversation with my fiancť that I decided to take action on my thoughts (which wasnít easy for me). She doesnít want me living in pain anymore than I want to continue enduring it, and she asked that I seek help. She asked me to imagine myself pain free. She asked me to ďthink of how my life would improve without any spine, back or body pain.Ē It is hard for me to imagine this reality but the thought and her love for me did inspire me to seek help. It is this conversation and optimistic thought of the future that allowed me to write this letter, and Iím pleased itís finally done.

    I understand the road to feeling better will not be easily traveled. I understand there is often no magic cure. However, I need to start somewhere and thatís why I am here today.

    With all sincerity and hope,

    Old 05-29-2009, 01:28 PM   #18
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    Re: your posts lets me know I am not crazy

    Thanks Jason for sharing your experience and letter. Writing a letter to my neurologist is what worked for me too. He no longer thinks I am wacko and is truly treating me.

    Daisy, is it because you live in Canada that you're experiencing such a long delay to see a pain doctor? I've heard that it takes a long time for surgeries and everything under the Canadian system. Hope you have a neurologist you can get to see quicker than the pain clinic. Whoever you see, I think Jason's idea of a letter first is great. Good luck.

    Old 05-30-2009, 09:15 AM   #19
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    Re: your posts lets me know I am not crazy

    I have small nerve fiber damage in my hands, wrists, and forearms along with Raynaud's syndrome. I was on 300mg neurontin at night and 60mg of morphine. It covered the pain only enough to survive my day--it still hurt to wash a dish, fold a shirt, etc. and my hands/etc. were swollen, red, stinging, aching, cutting glass etc. (Misdiagnosed with chronic tendinitis for 4 years by Kaiser P). Got new ins. + Pain Management. I asked for "Lyrica" because I'd heard some good things about it. I was also put on put on a calcium channel blocker to open my blood vessels and Cymbalta which for depression/anxiety + it has pain blocking properties. The Lyrica (it's a cousin to neurontin) made a HUGE difference. It felt like a nice soft glove covering my nerve endings. I go to a warm pool to get my blood flowing every morning which is also critical to my pain management. I have been able to get off of the morphine and some powerful anti-inflammatories. You might want to give some of these things a try if your insurance will cover it and visit your local pool for some self induced physical therapy. Like I said, it's worked wonders for Me! JillyWilly

    Old 05-30-2009, 11:33 PM   #20
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    Re: your posts lets me know I am not crazy

    Hello everyone!
    Thank you so much Jason for going back to that "dark place" and sharing your letter. I am writing one of my own and will make sure that any doctor I see reads it first! Yours is so powerful.
    Ruby8, I live in probably the third largest city in the country, yet we have only one pain clinic in one of our hospitals. That is shameful!! We were once known for our wonderful healthcare system, but not anymore.
    The system has been mismanaged to the point that I don't believe it will ever be fixed here in Canada. So we wait!! and wait and wait. I have been waiting for 5 months to see an endocrinologist for diabetes. The wait time to see the neurologist that has been treating me is over 2 months each time I need to see him, and I am already his patient!
    Jillywilly it is so wonderful to hear of someone actually getting some relief and having a small measure of success over SFN! Your point about the pool exercise is very useful! Thanks.
    Best wishes to all SFN sufferers!! Daisy

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