Malingerer, drug seeker, addict, so many names, so much pain. I feel them in the depths of my soul. The pain of my body matches that of my soul at being called these names. I hurt. I feel, seek help yet help only hurts. I'm called an attention seeker, drug addict yet all I want is to understand why I hurt. My soul hurts from not being believed. My body hurts from the inside out. I sit in my home that has now become a prison watching my children grow. I hear about their accomplishments, and how much fun they had. I wish and cry in private at what I can't see in person. I don't go to their games or to meet and greets in fear of someone touching me and causing more pain. I don't go and swim with yhem because the cold water hurts. So I sit and watch them grow, I watch them leave and not come back. I wonder why then realize they never knew. They never knew why I didn't go to their school, they never knew why I didn't go to their games. Because I didn't educate them. So I sit, I worry, then I'm gone. My pain finally winning. I placed a rope around my neck and fell. I don't have pain now. I don't have anything. The words of others can no longer hurt me. They can no longer play over and over in my head to beat me down.

This is the way this disorder beats us. This is why this disorder is called a suicide disease. We aren't people to most Dr's. We are a number. We are drug seekers, malingerers, fakers. They don't believe us. We need mental help not meds. Shakespeare said "What is in a name? By any other name a rose would smell as sweet." By any other name I'm still a human. I would love to not be in constant pain. Before people judge me or anyone else walk a mile in our shoes. There are times I expect if I look at my leg I will only see bone because it feels like someone poured acid on it then lit a thousand blowtorches all over my leg. I'm one of the lucky ones that it hasn't spread beyond my leg. I hope and pray they will find a cure for this disorder so no one has to go to the point of suicide again.

Allinara,

It sounds like you are hurting deeply right now on every level .. I am so sorry! Please try to ignore those that don't understand!! Please try not to beat yourself up for what you may miss out on while your children our outside the home and focus on the joys and bond you can create with them at home and within your limitations as these moments in time will be even more memorable to them than any school or social function could ever be.

Are you attending Cognitive Behavioral Therapy (CBT) in addition to a Pain Management provider? This type of therapy can be really beneficial especially for the mental and emotional aspects of this disease. They will often incorporate family and friends into the therapy to help those who are in your 'circle' better understand the affects of this disease and help them learn/cope with you. Just a thought..

sending you a warm iHug,
Tessa

I'm so sorry Allanira....we've all been down to the pit of despair at times, and it really is a bleak and awful place to be. Remember that although you feel very alone right now, there are many of us here who know that place, and we do understand. You aren't alone.

Any doctor, nurse, colleague, friend, stranger, anybody who calls you something unfair, just ignore every spiteful word of it, because one day they will find out what it feels like to struggle, and they will hate it, all the more so because they were so scornful of people they knew so little about. Anyone who can say those things does not know you, what your life is, what you are going through. So their opinion has no merit whatsoever. It doesn't matter what they think of you, because they know nothing. Of course it hurts, but you know the truth. You know you are not those things.

Just hang on. It's all you can do. Remember that your children don't just vakue you for what you can do, they value who you are. They value the time that they spend with you, not how many things you did. They will remember the smiles and talks and hugs and laughter, no matter where you were at the time.

Remember also that your children, who make you proud with their accomplishments, are there because of you. Not just because you gave them life, but because you have been the guiding force for them. You might not be able to do the things you want, but the fact that your children can do things is because of you. Second-hand enjoyment of life is not fair, but it's better than just being trapped there with no experience of the life outside at all. Your children and family bring you that life through their stories and experiences. It hurts, and of course you grieve for the person you were, and your lost dreams, but you have them coming back there, you aren't alone.

I'm sorry if that sounded preachy, I know I can do that sometimes . I've just been out in public for the first time in goodness knows how many months. Just into our town to an exhibition thing. I only lasted half an hour, and I was so nervous at being out, getting knocked or my back giving out on me... I'm glad I went, but oh boy do I hurt now. Sigh. The price we pay for something so tiny to anyone else....it's bizarre really, how completely your life as you knew it can disappear. I am not the person I was. I am more cautious, nervous, scared. I second-guess everything, and every situation. I have to know in advance where everything is, how far is it, how long might it take me. I don't dawdle, if there's something I want to see I just want to get there and see it, so that I can turn and go back to safety. To the prison. But at leat I am on day-release sometimes now. I value every moment of my time outside, because not very long ago I was just in here for months. I know I'm lucky.

While I was out I saw a very old lady in a wheelchair being pushed along. She had lost a leg and was a small cramped figure in the chair. She had the look of someone who knows pain too well. I thought, well if she can do it, good luck to her. I caught her eye as she passed and smiled. I hope I get to be older only if I can still get out sometimes and see the world.

Just hang on. You are worth hanging on for

Bram

This is for everyone out there to know there are others that know what they are going through. Yes I have gotten very depressed when drs told me to my face I needed mental and drug related help. I know what's wrong now. Yes there are times I do and will break down knowing there are things I can't do with my children. But I also know there are many things I can do. I tell them several times a day I love them and nothing will ever change that. I may try to do things I know I shouldn't but I will push the limits and to hell with this disorder that tries to control me. To hell with who ever tries to stop me. I am going to fight to the very last breath in my body to make my babies happy. Sorry moderators I know there are kids on n here but I'm tired of living my life imprisoned in my home out of fear. We don't have to live like that. We need a full life just as much as anyone. We need it more than most. If we let this disorder rule us we shrivel up and that is how we end it. By suicide. If we don't let it control us yes we hurt but we are recognized as fighting. Fight for all of us by not letting this beat us. Don't prove everyone right about this being a suicide disorder. Prove that we are stronger than this. If it's only proving it by doing 1 thing different. Feed the dog or cat. Walk out on the porch. Don't become a skulker don't hide in the closet. Get out and prove this disorder doesn't own you. I went out and planted 4 trees today. Yes I sat on the ground and dug with a hand spade but I did it. I really thought those days were gone. That I could never have a garden except what someone else planted for me. I did it. I was able to get those trees in the ground and I was able to plant some herbs and seeds. I love digging planting and watching my work grow. Yes we may need help at times. Yes we have bad days and good days. I just want all of us to TRY and do something we used to love and have decided we can't do anymore because of this. I challenge everyone to do one thing you used to love doing. If it means folding 1 shirt do it. If it means getting a dog and walking it do it. The gauntlet is thrown lets see who picks it up and accepts this challenge.

Dear Allanira,

This may not be on point to your post but thought you might find it interesting under the circumstances. While I was never termed a "drug seeker" probably because I did not even want to take the drugs that they wanted to push on me, but have been thought of as nothing being wrong with me until I finally found someone that properly diagnosed my neurological problems. Now to what I think you might find interesting.

I went to the doctor today. A doc that I have known since he began his practice. We have known each other on a doctor/patient basis for about 35 years. He and I are only a very very few years apart in age. (I think 3 years). When I was describing my pain today, he said, "That sounds exactly like what I have been experiencing". He said all he seems to do lately is go to doctor appts. (Sound familiar to any one here???) We talked a bit about how HIS life is changing and how little HE can do these days by comparison. Oh, how refreshing to have a doctor old enough to be having and experiencing some of the same conditions we seek help from them for with little regard to our feelings. How ironic when the shoe is on THEIR foot.

Please do not mis-understand. This doc has ALWAYS been very good to me and has ALWAYS been attentive, caring, and helpful. I would not have stuck with him for all these years if he had not been, but many others (specialists) were not so kind and were dismissive. I just found it very refreshing to talk to a doctor that now not only had the knowledge but also the personal experience and has actually FELT the same pain.

I was afraid that I might have to seek another doctor soon since my doc was getting older (as I am) and that he would retire. He has greatly reduced the size of his practice but will continue his practice for at least another few years. Having an older doctor has just proven to me that the older ones can better relate to some of the aging pains as they are starting to have them too. He was telling me about the ortho that he was now seeing and his ortho knows of ortho pain because he has had almost every joint and bone replaced, repaired, etc.

I am going to ADD a new category to my list of personal desires in a physician. I will seek one that actually HAS my same ailment as they will KNOW how I feel, not just guess based on something he learned from a book. He will have FELT it.

I am so sorry about not only your physical pain but your emotional pain. I hope my little story of today at least made you smile for a moment. When my doc could PERSONALLY relate to my issue of today, it made me smile. NOT that I was happy he too was suffering, but that he had a REAL understanding.

Not all docs are callous but many are so please remember that YOU know the truth of how you feel. Don't let docs nor disease hold you down. Do what you can and the rest will take care of itself in time. It took years for my friends to finally believe I was really in pain. Some still don't and that is THEIR problem, not mine. We cope the best we can and that is all we can do. I am just happy to wake each day. Each day is a chance at a good one, even if it does not turn out that way, tomorrow may be the good one, and so on. You just never know when that good day is coming so I want to be here for it. Some are bad, some are not. I just want to see which it will be every day that I can.

My PM Dr is the same way. He has neuropathic pain. So he understands at least a little what we feel. I wouldn't give him up for the world. He understands why I won't get an SCS right now. With 1 boy about to be 3 yrs, and 1 that's 4 months I have to wait until they are old enough I don't have to pick them up and carry them. He said we can wait and there might be better technology by then. He isn't pushing but I'm know he would love to get one in me. Not because he gets a kickback for selling another one but because he is very sure it would help me. But not being able to lift and carry more than 10 lbs isn't a good thing. My 4 month old is over 13 lbs. So at least another 6 yrs before I could get one. I do hurt every dang day but I'm refusing to let this beat me down to where I contemplate, or even do commit suicide. No I'm not under any psychiatric treatment. My treatment besides my meds is going to the shooting range and destroying paper targets, or beating people at bingo, well and cutting out dead branches and undesirable plants around my home lol. I don't want to hurt anybody be it 2 or 4 legged, I don't have desires of hurting myself well except the scratches I get from a good days work. Also I found out if I was under the treatment of a psychologist I would have to give up my firearms. I hunt. It provides good fresh meat that isn't laden with chemicals for my family. Plus we live in the country. I use them to protect my family. From rattlesnakes, coyotes, and 2 legged predators. So giving up my firearms is a bad idea. I would rather protect and feed my family then be treated for mental health. I do talk to a pastor regularly and he helps keep me on the right track. Also my Nanny (grandmother) helps a ton. She will be 95 yrs this year. She tells me a verse in the bible and I read it. It helps keep me grounded, and teaches me more about myself. She remembers verses that she knows will help and explain my disorder in a biblical sense. If I don't understand something I ask her. She is also telling me natural ways of helping my body besides meds. Like mixing epsom salt and baking soda relieves inflammation, and calms your skin symptoms. Also peppermint oil rubbed into your joints helps relieve arthritis and joint stiffness. I'm trying to get my family away from a lot of the processed foods and going natural as much as possible. It's amazing the things that were used before we started using processed foods and meds. I hope this helps and gives people something to think about.

Allanira,

I have followed this thread with great interest. I can feel how genuinely you are putting your deepest feelings into words. It blows me away. I have CRPS, but not as badly as many do here. As we all do, I pray that it doesn't flare or spread. I can see you digging deeply to find things to prop you up.

Stay on it. Fight the good fight. Do what is right for you. Which is what we all must do. I hope for some relief for you in however you may find it.

God help us all.

I can so relate to you, and can feel the emotion deep in the soul. I have been to the dark places. Actually have known 2 good friends I met in Braintalk, and then here when that forum went down that took their life. It left an empty place in me. I wish there was something I could have done........but they were determined to get out of what they thought was living hell.

Only a couple of days ago I was cleaning out an old email account, and came across the emails we had shared back and forth about what he was going to do, and finally did. Left me sitting there with tears and wondering if he did the right thing or not, and where is he now.

Like you I have found a good doctor, and he seems to care about me more then most of my family. I to am one to try and not take any meds, but the RSD can get the best of me, and I am forced to take some just get the edge off so I can have some relief, and give me the ability to have some kind of life.

I too am going to fight this with every breath! I will do it for those that just couldnt handle it and left us early. I will do it for all those suffering in this forum, and I will do it for me........because RSD doesnt own me! You have spurred me on! Inspired me to go forward and do the things I can, and not worry about those things I cant.

I love all the replies, and the people that wrote them! You all are some of the most caring sensitive souls I have ever come across. Dont ever stop.......you never know who reads these posts. There are literally hundreds that come by and read these posts that havent signed in as a member, and many more that are members that only read. You may have helped so many people.

I applaud you for standing up to this thing we call RSD that is one of the silent killers. We have no idea how many never find this place, so they never get that little bit of support that would have changed their course. Thank you for being open and honest, and letting us share your pain. As you go through life......come back and share your joys and successes. I will truly cry with you when your down, and will jump for joy when you. Beat it down!

I'm tired of hearing nothing but bitterness from people that have this disorder. Yes we hurt. Yes it does go to our souls and the more bitterness we have the worse we feel. The more we start tearing at our emotional and mental supports. I'm lucky. My emotional and mental supports are firm in my family and friends. My 2 boys keep me going even on my worst days. If I don't take care of my babies there isn't any one else right now to do it. I would have to call my in laws or friends to come help. My husband is in Korea until March next year. Yes I get depressed at times. If I can't stand and do dishes for longer than 10 minutes or mop the kitchen floor I get depressed. These are things I could do all day in and out every day. Now I can't get out n the kitchen floor and do a deep scrub. I can't stand there and scrub my counters or stove. I can do it for 5 minutes then I'm done for a while. It takes me a few days to get 1 sink full of dishes washed. I was amazed I got those trees planted yesterday. Today I'm paying for it but I would gladly do it again, and will do it again. I am taking my life back even if it's only a little. Today I get to take my youngest to his PT session, and get my lidoderm patches. I still challenge everyone to go do 1 thing they used to do. If that means just watering 1 plant, walk your dog even just down the driveway, or go sit on the porch do it. We need to start taking our lives back. Remember we all hurt, we all fear the possibility of something setting off a flare, or spread. We need to STOP living in fear. The more we hold up in the house the more we fear the unknown. The world becomes the unknown. We need to step out into the sun. We need to feel it and enjoy it. Stop being scared and trust your judgments on what you can do. Don't let this define us. Let's start enjoying life again. Go feel the sun and see the flowers as we were meant to.