[painman2009]

here it is... presently I suffer a rare neurological disorder called RSD/CRPS
I live with extraordinary pain every day in many different ways.
and yes RSD is a forum here but wait.
Also I have multiple herniations in spine, bilateral carpul tunnel, nerv impingment, and suffer from Migrains.
now the Migrains I had to fight each and every dr, for DX from 2 years old. but they all saw the migraine in action then dx,d me.. they refused initially because they said only females get these..
then a comp related injury to my neck and back. mind you I fought to stay at work through all of it. Pain and all, I dealt.
now another work related accident did me in with RSD
I fought so hard to get back to work. and I did (for a year) then I was pulled out. now this pain is life consuming, no more hobbies not "allowed" back to work. though comp wants me to my job won't accept me nor any other job. and I want to be back to normal. but I doubt I could last a full day. let alone an hour. but its under comp
I feel like a prisoner. My neurologist says to do what I can and try to push it a little more each time but only what I can endure. but comp.. if they get a pict of me for 1 second doing anything they can turn it into anything they want saying that I have lied about my disability or issues keeping me from work.
I am slowly going insane seeing these walls in my haouse all the time . and even more so seeing all the work that needs to be done, and not being able to do it.. not because of comp but inability.
I live in fear because of my RSD and no real treatment and or cure.
also because of comp. they have gotten many IMEs on me and all pretty much say I'm unemployable. thas their dr,s saying this. my neurologist says there is hope.. I hold on. but this RSD also affects my emotions. I grow angrier every day. and its getting worse. lamppost to the point I can't control my rage.
I am terrorized by the insurance with denials or authorizations to places that no longer accept comp or to a place out of state ..(but not for treatment ,, for consult) then they will see... hello going out of state is going to be hard enough once. now they want me to go just for a consult.. jesus . how does that make sense. My heart is bleeding hurt and sorrow. loneliness . fear. uncertainty, I am callouss and short with my family pushing them away when I really want and need them close. I offer advice to others. and I believe it to be good advice. but have no idea how to follow it myself. I have lost myself because of this beast. my path is no longer in sight let alone clear. sleep evades me . common sense as well. my memory is broken.(short term anyway). my speech my vocabulary and math skills also no where near what they were. I start to cry then stop. My pain is getting harder and harder to hide. it breaks out in howels and tears. and then guilt takes over for my wife and kids. Why must they deal with this.I feel like an anchor . I never wanted to be like this. Its almost my biggest fear come to life. invalid. incapable, my mind and body are failing me. so my self worth is failing as well. the RSD this beast has infected me from waist down, my belly, back, left arm , my chest, my head.. all that from a an injury to my leg.even my right arm in places.
This pain, is so much more than physical. and it doesn't just spread on me, it spreads in the family and friends that surround me.Pain management doesn't cover this. and being terrorized by comp doesn't help.. like I said I have no idea where this thread belongs.. but that fits doesn't it as I no longer know where I belong.

[Leesa]

Bless your heart. How WELL I know this story. I'm a spinal patient as well as a chronic pain sufferer. I've dealt with this beast of chronic pain for 26 years. Yes, you read that right -- 26 years. It has been agony. No one understands. People say "Gee, you look ok." Or "does your back still hurt?" Or they'll say "Why don't you exercise?" My God, EVERY MOVEMENT I MAKE is agony -- how in the hell can I exercise? This pain has advanced into RSD now, so it's NOT just my back!!! It's everywhere. So they want me to exercise?? I'm lucky if I can get out of bed! YOU know what I'm talking about, don't you Painman!!!

Ahhh, the anger. I went thru that stage too, but I've gotten over that. It seems that I've accepted the fact that I'm going to be in pain the rest of my life. I have a good doctor who is trying very hard too help get me comfortable, but it's been very difficult because I'm VERY hard to treat. In fact, it takes triple doses to medicate me, and that's questionable to the DEA. My doc would get into trouble if he medicated me like that! I wake up on the operating table during surgery -- that's how hard I am to medicate. I've done that 3 times during surgery!!! They just can't keep me asleep or give me enough to do it!

I know the frustration, the feeling of being uselessness, the loneliness, the pain. Many of us are stuck in this awful pit of despair. But if you keep postiing or look for other support groups who can help give you the support you need, or if you can find a group locally it will certainly help. Even if you can find just a chronic pain support group it would be great! Just try not to isolate, even tho getting out is painful. Sometimes we have to try to "ignore" the pain as much as possible -- even tho ignoriing it isn't the right word as we can't ever ignore it. It's there all the time, and is too severe to ignore. Just try to "bypass" it and get out and DO ignore the ignorant statements made by people who don't understand. Just say I'm ok and walk on cause if they really wanted to know how you were, they'd come to the house and be supportive.

I wish you the very best. Just know there are people "out here" who DO understand and who care. God bless Painman, and take care. Hugs, Lee

[painman2009]

Originally Posted by Leesa

Bless your heart. How WELL I know this story. I'm a spinal patient as well as a chronic pain sufferer. I've dealt with this beast of chronic pain for 26 years. Yes, you read that right -- 26 years. It has been agony. No one understands. People say "Gee, you look ok." Or "does your back still hurt?" Or they'll say "Why don't you exercise?" My God, EVERY MOVEMENT I MAKE is agony -- how in the hell can I exercise? This pain has advanced into RSD now, so it's NOT just my back!!! It's everywhere. So they want me to exercise?? I'm lucky if I can get out of bed! YOU know what I'm talking about, don't you Painman!!!

Ahhh, the anger. I went thru that stage too, but I've gotten over that. It seems that I've accepted the fact that I'm going to be in pain the rest of my life. I have a good doctor who is trying very hard too help get me comfortable, but it's been very difficult because I'm VERY hard to treat. In fact, it takes triple doses to medicate me, and that's questionable to the DEA. My doc would get into trouble if he medicated me like that! I wake up on the operating table during surgery -- that's how hard I am to medicate. I've done that 3 times during surgery!!! They just can't keep me asleep or give me enough to do it!

I know the frustration, the feeling of being uselessness, the loneliness, the pain. Many of us are stuck in this awful pit of despair. But if you keep postiing or look for other support groups who can help give you the support you need, or if you can find a group locally it will certainly help. Even if you can find just a chronic pain support group it would be great! Just try not to isolate, even tho getting out is painful. Sometimes we have to try to "ignore" the pain as much as possible -- even tho ignoriing it isn't the right word as we can't ever ignore it. It's there all the time, and is too severe to ignore. Just try to "bypass" it and get out and DO ignore the ignorant statements made by people who don't understand. Just say I'm ok and walk on cause if they really wanted to know how you were, they'd come to the house and be supportive.

I wish you the very best. Just know there are people "out here" who DO understand and who care. God bless Painman, and take care. Hugs, Lee

hi lee. I actually have been a member of neuro talks for some time. but mainly for RSD. I got sooooo built up with emotions and pain, and anger with all the things wrong with me. I felt like I needed a different place to vent, this once. and thank you for your response it was very kind of you. Im sure you must know what it is like to work at being in control of yourself. with me I have spent a life time trying to hide my fear, sorrow, pain. only letting a fraction show through. now as a father who "was" the bread winner ,the educator , the discipliner, ,and I never cried. even through all my other crap. and I also never panicked. I always was the one in the house to be the rock and so on. I never asked for help. If i could see it done I could do it. if it fell apart I could fix it. so you can see how this is hard.. I need to rely on my wife and kids to do the "daddy " stuff. Its like my kids and wife were abandoned and left to fend for themselves. plus they have another child too care for. aside from dumb pride. its hard to see this stuff done by others. I loved working with my hands, taking care of the properly and the house.you know arrgg arrr arr power tools. then this pain . this disability. and trying to get treatment. uuughh. its just all a bad mix and I fell week. so I came here looking to vent and looking for the kindness I received . perspective is the greatest gift to receive to clear the chaos that built up. .. sorry I tend to be long winded. but all of that really to say ..."thank you" I am sorry that your 26 years of pain wound up with the name RSD attached to it. That is the beast of all beasts. I have worked through broken skull, back damage etc.. but RSD is the worst.. be well

[Leesa]

I know it's awful for men because they ARE supposed to be the "strong ones" but that's the trouble with this country and our culture. We don't allow men to just be a "person." We don't allow them to cry when they're hurting or sad -- we expect them to be the heroes and the pillars. Why is that? Where is that written in stone? I think a man is MORE of a man if he can cry when he's sad or hurting. A man who can actually FEEL his emotions is more of a man to me than some guy who is "pretending" to be some action figure from a comic book!!

Then when a man all of a sudden can do his "manly things" anymore, this culture of ours seems to look down on him, which is ridiculous in my book. When you can't do something, you just plain CAN'T DO something! Simple as that. And it's HARD on men -- they aren't sitting on the couch for their health - (well actually they are! LOL) What I mean is they aren't sitting around because they WANT to. My late husband had severe pain, but he wouldn't stop -- he kept doing stuff until he could barely walk. Then he got cancer, and he kept working with his hands, until the disease made him stay in bed -- and that caused him SEVERE depression. I could understand that because he was used to DOING things -- just like YOU. And all of a sudden he couldn't do them anymore.

Being disabled is cruel. It's one of the cruelist things I can think of. So many things that you loved to do are taken away because of your "disease." Some things are simple things -- like you said, just using a power tool --- you can't even use that anymore. I used to love to draw and paint, but i can't do that anymore because my hands tingle & get numb from a herniation in my neck and they shake too. Anything I painted would look like finger painting. LOL I can't even go for a walk -- you probably can't either.

We're quite a pair, aren't we?? We should have a gripe session regularly. It would do both of us some good! LOL I also go to Psych Central which is a "sister site" of this one. It's just Psychcentral.com and has loads of topics/forums. It's really busy!!! Anyway, please take care and I'm sure we'll talk again. God bless. Hugs, Lee

[painman2009]

A rock I am no longer.my youngest doesn't remember me "not " being disabled. All he will remember is the me that is now. How upsetting. At least the other three got to play with me and see me really work. I mean don't get me wrong the littlest still sees me "TRY" to over come this beast with I hope will teach him to never give up. my older three they see how this is killing my will. It is odd and uncomfortable for me to be like this.. I fight a wheel chair daily. I use two canes right now but i do not know how much longer I can do that as the beast has entered my arms, and carpal tunnel is in both arms and my hernated disc in my neck are an issue. but I refuse to let this put me in a wheel chair...
it has taken too much from me already..