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rsdcrpsfire Posts: 2022
VIP Member
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Greetings everyone As you know I've been quite busy with the Functional Restoration program which I've been attending since May 26th. I will graduate around the 15 of July. When my doctors told me to let everything go that had to do with RSD/CRPS, I didn't understand. I even struggled with it. I didn't understand why they would tell someone who's put years into advocating, promoting, advertising, supporting RSD related circumstances and their heart to just.... back off. I'm finally understanding why. When we speak of pain, share our stories, discuss WC, all the pain it's caused us physically and mentally, the turmoil, the stress, how there is no cure for us, we are reliving the injury and pain that brought us to a suffering point of existence over and over again. After deep deep thought, I can now understand what they mean and for our own sakes. While I always believed that opening up (when I was finally able to do it) was a road to acceptance, I never believed in any way that by doing so could be detrimental to me. Because I've started too much that I can't go back on, I won't be leaving what I did behind. (what I did was bring many of us together, offer knowledge and insight, and more, just like most of us do) We're on this road to make a change, provide awareness and really try to do something about it. Instead I have to find balance to do as my doctors instructed me AND finish what I started. Now I ask each of you.. (Please think about this carefully) Does it help you to speak of your prior lives, your existing pain, all the hell this has cast down upon you... Or when you really think about it... Does it tense you to do so? If it tenses you, it's adding to physical pain, if it's causing you to think back, it's adding to your emotional pain. This will always keep us in a painful cycle. Just because I've finally come to believe this to be true, at least mostly true, doesn't at all mean any of you do. Instead, I would just like to know your feelings about it. There is no right or wrong answer. Thank you in advance for sharing... Hugs, ~Twinkle "Find a place inside where there is joy and...
...the joy will burn out the pain"
~Joseph Campell
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CA Ambassador for the Power of Pain Foundation (POPF) www.powerofpain.org
Statements, advice and opinions offered herein are based entirely on life's experience, circumstance, education and research. I'm not a medical professional. That which I share with you is not intended to replace advice or treatment options by a licensed medical professional.
I am an advocate and spokesperson for Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome.
"However weak our hearts may be, we are not that weak we cannot stand the pain, and, however strong we may be, we are not so strong that pain can't touch us!"
"I fight, you fight, we fight together". ~KurtisV
www.RSDAdvisory.com- Where Chronic Pain & Depression Collide
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revvanbus Posts: 1985
VIP Member
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For me, having a chance to share with people who I can share with who really understand that I am not lying about pain, not exaggerating, helps me out. I find myself writing answers that don't get sent alot. I try not to dwell in the past or even anticipate the future much. I want hope, answers for the future. I also want to be help for others. So I, just for me, don't find talking about pain makes me dwell on it or increases it. Rev. Maryanne Rev.
RSD: THE GREAT DECIEVER. IT FOOLS US INTO SEEING OUR PAIN AS INJURY, BELIEVING OUR MOVEMENT WILL BREAK A BONE INSTEAD OF HELPING OUR OSTEOPOROSIS. THE DISEASE FEELS LIKE IT RESIDES IN OUR HANDS/ARMS, FEET/LEGS WHEN IT LIVES IN THE DORSAL HORN Of THE SPINAL CORD AND THE BRAIN PAIN RECEPTOR CELLS. MOVE, REST, MOVE, REST, MOVE. |
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rsdcrpsfire Posts: 2022
VIP Member
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Thank you Rev. This is how I felt. I needed to be among people who understood. Who understood me while I understood them. When we see doctors, attorneys, etc etc that think we're exaggerating or more it's not very comforting at all. It's comforting to know we are not alone. Thank you so much for replying. Sending a hug your way, ~Twinkle "Find a place inside where there is joy and...
...the joy will burn out the pain"
~Joseph Campell
__________________________________________
CA Ambassador for the Power of Pain Foundation (POPF) www.powerofpain.org
Statements, advice and opinions offered herein are based entirely on life's experience, circumstance, education and research. I'm not a medical professional. That which I share with you is not intended to replace advice or treatment options by a licensed medical professional.
I am an advocate and spokesperson for Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome.
"However weak our hearts may be, we are not that weak we cannot stand the pain, and, however strong we may be, we are not so strong that pain can't touch us!"
"I fight, you fight, we fight together". ~KurtisV
www.RSDAdvisory.com- Where Chronic Pain & Depression Collide |
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rsdcrpsfire Posts: 2022
VIP Member
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P.S. Rev For me, there have been times, I've become so tense from not being able to help others or myself. It's my nature to give and give and do more and more. It can cause me extra pain, but... I'm not so weak that I can't handle more for the sake of others. The bottom line is I don't want to hurt, but if that's what it takes to be there when others aren't... It's a price I will forever pay... I have no regrets. xo, ~Twinkle "Find a place inside where there is joy and...
...the joy will burn out the pain"
~Joseph Campell
__________________________________________
CA Ambassador for the Power of Pain Foundation (POPF) www.powerofpain.org
Statements, advice and opinions offered herein are based entirely on life's experience, circumstance, education and research. I'm not a medical professional. That which I share with you is not intended to replace advice or treatment options by a licensed medical professional.
I am an advocate and spokesperson for Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome.
"However weak our hearts may be, we are not that weak we cannot stand the pain, and, however strong we may be, we are not so strong that pain can't touch us!"
"I fight, you fight, we fight together". ~KurtisV
www.RSDAdvisory.com- Where Chronic Pain & Depression Collide |
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Swimmom82 Posts: 456
Member
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Being new to RSD, only diagnosed a little over a month ago, i am actually asking myself this same question. I can admit that i am still in denial. However, on one hand i am so glad to talk to everyone who can understand my pain. On the other hand, i hear people speaking of going through crisis with RSD where they have to use walkers and canes and such, and how they can't do things. I'm not so sure i want to think about whats to come, it might just be fueling my denial. (dont get me wrong, i love everyone here and am thankful for all the insight!) I keep telling myself that i wouldnt be here if i were in denial, but i also keep telling myself its not going to spread and get worse. |
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melisA
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Hi ya, I'm not sure how to reply to this one except it helps in knowing your not a lone and others are going through what you are. There is no point in discussing the future as you don't know what it holds. Talking of our problems in past sense sort of makes sense on it's own as it helps makes up more whole and maybe understand things better. It releases a lot of anguish of the why me factor and helps talking about it. When your in such pain as we are you want to scream and let the world know but few listen. I might be wrong but I think it's all part of the game. We all want the same things out of life but each of us go about getting there a little bit different. Boo |
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Lookinglass
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Swim, It's natural to be in denial and a normal response. I to was in denial and didn't want to know much about it. The mind is very powerful and I didn't want to have a mind set about rsd. I was affraid it would hurt me more than help. But after letting them do all their experiments and treatments,I ended up with a spread. Being ignorant about it,let therapy super sensitise it! Set your mind to fight it tooth and nail. I regret not being informed,I would have stopped some of it. Whether you choose to be here or not,your about to meet alot of medical professionals that don't know what this is. Be careful and beware! Does talking about pain increase my pain NO! I found it very benefical to share. I've yet to meet one person in real life that has RSD or has heard of RSD. I've learned from others just how bad theirs is and how fortunate I am! I thought I was alone til I found MDJ. I read about it,but talking to people that accually have it too! Well to me that's priceless! And it has made me realize things I hadn't been faced with yet and know I can make informed decisions when it comes to my care. |
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newrsd Posts: 1076
Senior Member
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I think that there is a difference between dwelling on pain and discussing RSD. Discussing it and complaining can be very theraputic (especially when most of the time you have to put a face on) and can help people to learn how to cope better and to have a better attitude. On the other hand, sitting around and crying while u r in pain (which I am doing right now) causes the pain to feel worse so it is better to try to find a distraction and not think about it. |
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rsdcrpsfire Posts: 2022
VIP Member
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Hi newrsd Distraction! Bingo! That's exactly right. When we distract ourselves we are distracting pain. Nothing at all wrong with discussing it if we don't let ourselves become overwhelmed while doing so. Everyone is different. It has been proven that by speaking of a injury, illness or disability that the pain receptors in the brain stay active. This is what I'm trying to learn by others. Thought processes and beliefs vary. If any thing, it's a decent conversation piece. Warm wishes, ~Twinkle "Find a place inside where there is joy and...
...the joy will burn out the pain"
~Joseph Campell
__________________________________________
CA Ambassador for the Power of Pain Foundation (POPF) www.powerofpain.org
Statements, advice and opinions offered herein are based entirely on life's experience, circumstance, education and research. I'm not a medical professional. That which I share with you is not intended to replace advice or treatment options by a licensed medical professional.
I am an advocate and spokesperson for Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome.
"However weak our hearts may be, we are not that weak we cannot stand the pain, and, however strong we may be, we are not so strong that pain can't touch us!"
"I fight, you fight, we fight together". ~KurtisV
www.RSDAdvisory.com- Where Chronic Pain & Depression Collide |
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Lazy1 Posts: 2736
Senior Member
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Everyone has a valid point. If talking about your pain makes it worse, then they should back away from discussing it so much. If being here makes you dwell on your RSD, then you should back away. Now, I'm not saying for those people to leave, just not be here as often. For me, personally... hearing about others pain or discussing my own does not increase my pain. Talking about it here is a good release. I, too, have never met anyone who has RSD. My physician said that I'm the only patient that he's ever had with RSD. Even my family does not understand and most don't want to, with the exception of my mother. I enjoy talking to others with RSD and hearing their stories. Every story on here makes me feel less alone. Every new member with questions that I had makes me feel less afraid. I have found useful info regarding treatments and meds. I don't think that I could be talked into an SCS. I do fear it getting worse, but everyone is different. Everyone will progress at a different rate and go through periods of less pain, too. Just my thoughts. I'll support you whatever you decide Twinkle. |
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