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Who moderates or reads what we all are posting? THIS MESSAGE IS FOR YOU AND YOUR MODERATORS. If there is something you can do or someone you can get in touch with to help, please act. We need help. I need help. Guide us in a solid direction to a facility that we be able to help treat our conditions. Mine is extremely complex with several diagnoses. There are many of us with chronic pain that are screaming out for help. Some do it in a positive manner and some don't. I won't hold anything back as I speak obviously. Living life like this is more like just surviving until God calls us home so we don't have to suffer anymore. Yes, there are plenty of moments when I wish I had the courage to end this suffering on my own but I think about those that I love and how they would be affected. Wake up and everything starts and continues until I close my eyes late at night only to get minimal hours of sleep just to begin the next day the same way and in most days even worse. Personally, I have no life, NOTHING! If you are listening, reading, observing these post there must be a reason other than just looking for troubled individuals doing something wrong. You must know something about what is being said to provide some real sold help.

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  • Posted

    Dear Rocky,

    You are not alone and I have never noticed anyone who is identified as Moderator. I believe we are all here to share our stories and help others with this dreadful disease with our experiences and support. There are days when I can't write back to someone asking for help because it's a black day (as you described), and it's all I can do to get back and forth to the bathroom.

    I'm sure that is the case for many of us who have had RSD a long time, I was diagnosed about 15 years ago and I try to help myself by helping others... and usually it really helps me. I have routine where I try to stretch and meditate every day, and do some good deed, no matter how small. There are times (usually in the middle of the night) where I have to take strong pain medication, but by only using it as a "rescue" treatment my doctors have no issues with me using it and I have never in the 15 years had to increase the amount or strength of that medication.

    I do use a medication that was developed for seizures Neurontin (generic name gabapentin), every day that helps a little with the nerve pain, but it is in helping others that I find the most relief. I hope that you feel less alone and that I may have helped in some small way. If you have never tried meditation, it's as easy as breathing to begin. Just get in as comfortable and peaceful situation as you can, and begin to simply pay attention to your breathing. In through your nose and pause, then release through an open mouth... and repeat. I close my eyes, but some folks concentrate on a candle flame or something else simple. .Allow your breath to slow down and when unwanted or unhelpful thoughts come into your mind, just notice them and let them go while consciously relaxing your body, starting with the toes and working up body parts with each set of breaths. There is no way to get it wrong, except by not trying, Sir.

    I hope you feel a little better, you are not alone and others here will help you... but they must be allowed to do it when they are able, we are all suffering, it is a universal truth. Some of us are unfortunate and have more than is understood by the rest of the world. We can help ourselves by helping others, even in small ways that may not even be noticed. You will know, and that is enough.



    • Posted

      That was really well said, Susie. I almost feel like printing it out for when I feel dark.
    • Posted

      I agree with Anne, that was well said. I'm having a very hard time finding help with the other chronic troubles I'm having here in Charleston SC outside of CRPS. I've tried the breathing techniques and they are not helping at all. Believe me I've tried. Thank you for your kind words.


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