[Mslday]

I think that the fear of this dreaded diagnosis is my worst enemy.

Sometimes I'm paralysed into believing that I can't go on, other times I wake up with that fighting spirit that says, "no you're not going to get me, "I'll teach you Mr RSD about who's really in control" only to be knocked down time and time again. It's an ongoing battle for me and frankly I'm getting quite tired of it. I dread the thought of winter rain and snow around the corner. Should I resign myself to this fate or keep fighting? They tried to teach me that "pain is my friend" in the pain management program and I still can't accept that. Pain is no friend of mine and I'm certainly not inviting him to my party. I ignore the pain signals as much as I can until the exhaustion of the spreading throbbing burning deep bone pain screams loud enough that I have to finally listen.

My husband says I have control issues. I laugh at that now, finally accepting that he’s right. But what can I do with that knowledge, it's who I am. How does one change such deeply rooted personality traits? Laughter does make it easier to accept it, but that still doesn't change the facts.

Why do I have to battle like this day in and out? It makes my so tired and vulnerable. How many of you do this? Am I alone in this battle or do any of you also have this struggle?

I could be considered by many as fairly functional as far as RSD goes, although I lot my job 3 years ago and still haven't returned to work. I don't know who in their right mind would hire me with all my quirks and sudden onsets of pain flares and frequent medical appointments. I'm just not the dependable employee type I used to be. Has any one here been successful with inventing your own job through self employed that helps you to manage the daily management of RSD pain?

I need to work again, cause I need to find purpose in my life. I know that I have so much to offer I'm just not sure how to go about getting started. Any suggestions would be welcome.

I'm sorry if I'm rambling here, I just though I should write my true feelings for once instead of hiding behind my "I'm OK facade"

Hoping you are all are in a good space and pain levels are manageable.

MsL

[daniella]

Don't me sorry. I know I can relate and I am sure others too. A few thoughts are you in mental therapy or seeing a psych? Now for the 1st 2 years of this i did not. I had in the past a lot but I was so if you would fix my pain and ohysical health mentally I would be better. Well this was not happening. As time went on I was truly loosing my mind. When I look back I should of been in a psych ward. Now I am not saying this you but me. Anyhow about 6 months ago I went to the psych and got back on mental meds and though my anxiety,depression,etc is still there I am much more rational,calm,and hopeful. It did not take away the physical pain but has helped me cope/accept/and make goals. I think for me I have my bad days and good mentally. Some days I just feel like how can I face the day like the other but I called my mom who motivated me to see the progress and went to a movie. It made me feel better. I understand as I want to work too. I need to feel productive and like a "person" right now my pain level is too high and unknown but I make other goals. So maybe you can. Like sign up for a class,volunteer,make a schedule and do things by that to get into a routine. May I ask though you know that about yourself your husbands statement how did that make you feel? I guess I ask because for the 2 years I was loosing my mind people were telling me that and it really ****** me off. Now I know they were right and wanted the best but I think a lot is how one is approached. Even when docs talk about the mental. I agree this does take a toll that way so suggesting therapy is good but making it seem like therapy will cure the pain is not or that this is in the head. So using your voice and telling people and even doctors how you feel and what can help I think is important. Ok enough of my novel. Hang in there and you have to hold to hope.

[CZZ74]

Originally Posted by Mslday

I think that the fear of this dreaded diagnosis is my worst enemy.

Sometimes I'm paralysed into believing that I can't go on, other times I wake up with that fighting spirit that says, "no you're not going to get me, "I'll teach you Mr RSD about who's really in control" only to be knocked down time and time again. It's an ongoing battle for me and frankly I'm getting quite tired of it. I dread the thought of winter rain and snow around the corner. Should I resign myself to this fate or keep fighting? They tried to teach me that "pain is my friend" in the pain management program and I still can't accept that. Pain is no friend of mine and I'm certainly not inviting him to my party. I ignore the pain signals as much as I can until the exhaustion of the spreading throbbing burning deep bone pain screams loud enough that I have to finally listen.

My husband says I have control issues. I laugh at that now, finally accepting that he’s right. But what can I do with that knowledge, it's who I am. How does one change such deeply rooted personality traits? Laughter does make it easier to accept it, but that still doesn't change the facts.

Why do I have to battle like this day in and out? It makes my so tired and vulnerable. How many of you do this? Am I alone in this battle or do any of you also have this struggle?

I could be considered by many as fairly functional as far as RSD goes, although I lot my job 3 years ago and still haven't returned to work. I don't know who in their right mind would hire me with all my quirks and sudden onsets of pain flares and frequent medical appointments. I'm just not the dependable employee type I used to be. Has any one here been successful with inventing your own job through self employed that helps you to manage the daily management of RSD pain?

I need to work again, cause I need to find purpose in my life. I know that I have so much to offer I'm just not sure how to go about getting started. Any suggestions would be welcome.

I'm sorry if I'm rambling here, I just though I should write my true feelings for once instead of hiding behind my "I'm OK facade"

Hoping you are all are in a good space and pain levels are manageable.

MsL

I too have this on going question , debate raging within me. is that anything i can do to make myself valuable again? I speaking in terms of the large annual income i have lost , my company my love of work, of being creative,marketing , etc. I have this conversation frequently with my sister, as early as last week, I was saying , If someone would just hire me to brand their product, provide an at home assitant who could do the typing , put my thoughts on paper, clean them up as I have lost all vocabulary and organizational skills, help me dress, clean up the house, drive me and if these people would allow me to work just for an hour or two on the days I could , Im not kidding I actually had this conversation and have started it many times. My sister sits ,listens patiently says a few uhums and then I noticed her eyes were wet, and then the ricucouslyness of it all hit me yet again. I think that says it all. God love my sister for listening. We both then had a good cry. Professionally, I was my sisters hero, she looked up to me. She is a successful banker now, she used to call me for advice on career moves, not anymore. Its all so depressing.I know I have so much to be thankful for, yes my husband loves me, but he loves a totally different person he cant help it, there is pity in there, it kills me.
So MsL I totally relate, that is why I am seriously considering the pain pump, even though Dr. S told me I can never have surgery,if there is a chance I coud have part of my life back I have to try. cz

[allentgamer]

Well you two have summed up my battle with RSD and myself quite nicely. I think the hardest thing for me was that notion that life as I had known it was now history, and there was nothing, and I mean nothing I could do about it.

It put me in a 3 year depression where I didnt want to see anyone at all, and when I did it was as if I was not there. All I could think about was how I was going to get myself back into the work world, and recoup all that this RSD had taken from me. The more I tried, the more it knocked me back down.

At the same time I found these forums, and was making some friends that I know to be my RSD family because we share such a common bond, such as what we are talking about now. As I learned about others struggles, mine seemed not as bad, maybe even childs play compared to some. I began to try and put my struggle into perspective, and to force myself to face the reality that this is now my life. Pain is now a part of me as much as my arm, or my leg, or that image in the mirror I look at every day, and I have to get used to the idea of dealing with it daily.

I still yearn for the old me that had the expensive sports cars, big office, and the 20 more years left to advance in an industry that could make your wildest dreams come true. Only now I look back in pride, because I made it at least. Nobody can take away what I did accomplish, and because of those successes, and hard work. I can beat this RSD down, and not let it steal my joy for today.

Sure I need medication to help me with this fight, and sometimes it knocks me a good one. Puts me down for a few days, but I bounce right back! I come back swinging! It will not keep me down. There is really too much to do. There are grand kids, sunsets, sons and daughters, husbands and wifes, places to see, restaurants I havent tried yet, and the list goes on.

Last summer I took my power chair on the train, and we travel up to Oregon, and had a blast! This summer we put the power chair in the van and went to coast about 6 times, and had a blast! Did RSD try to take the fun out of it? OH you can bet it did! But it couldnt beat me down, sure it hurt like heck, but when does it not? It hurts everyday, just some worse than others.

Maybe you will be the one to beat it back and get that job back! Just dont let it get you down. Life is too short for us to let this dumb RSD play with our minds like that.

[keep smilin]

Originally Posted by allentgamer

Well you two have summed up my battle with RSD and myself quite nicely. I think the hardest thing for me was that notion that life as I had known it was now history, and there was nothing, and I mean nothing I could do about it.

It put me in a 3 year depression where I didnt want to see anyone at all, and when I did it was as if I was not there. All I could think about was how I was going to get myself back into the work world, and recoup all that this RSD had taken from me. The more I tried, the more it knocked me back down.

At the same time I found these forums, and was making some friends that I know to be my RSD family because we share such a common bond, such as what we are talking about now. As I learned about others struggles, mine seemed not as bad, maybe even childs play compared to some. I began to try and put my struggle into perspective, and to force myself to face the reality that this is now my life. Pain is now a part of me as much as my arm, or my leg, or that image in the mirror I look at every day, and I have to get used to the idea of dealing with it daily.

I still yearn for the old me that had the expensive sports cars, big office, and the 20 more years left to advance in an industry that could make your wildest dreams come true. Only now I look back in pride, because I made it at least. Nobody can take away what I did accomplish, and because of those successes, and hard work. I can beat this RSD down, and not let it steal my joy for today.

Sure I need medication to help me with this fight, and sometimes it knocks me a good one. Puts me down for a few days, but I bounce right back! I come back swinging! It will not keep me down. There is really too much to do. There are grand kids, sunsets, sons and daughters, husbands and wifes, places to see, restaurants I havent tried yet, and the list goes on.

Last summer I took my power chair on the train, and we travel up to Oregon, and had a blast! This summer we put the power chair in the van and went to coast about 6 times, and had a blast! Did RSD try to take the fun out of it? OH you can bet it did! But it couldnt beat me down, sure it hurt like heck, but when does it not? It hurts everyday, just some worse than others.

Maybe you will be the one to beat it back and get that job back! Just dont let it get you down. Life is too short for us to let this dumb RSD play with our minds like that.

We are all on the same page.. the feeling of dispair and helplessness and hopelessness... times 50 some days..other days I feel I can move mountains and smile while doing it...We are all living with a very scarey, unpredictable illness.. I was told once that I have it for the good of others..to set an example.. for the good of others... I am okay with that except sometimes I am overwhelmed with saddness but then those are the times I search for a positive and thank god it is me suffering as I would never want to see anyone I love .. my family or friends go thru this.. anyone...ever! This was a wonderful topic.. well written!!

Plz.. keep smilin..

[SandyRI]

Originally Posted by keep smilin

We are all on the same page.. the feeling of dispair and helplessness and hopelessness... times 50 some days..other days I feel I can move mountains and smile while doing it...We are all living with a very scarey, unpredictable illness.. I was told once that I have it for the good of others..to set an example.. for the good of others... I am okay with that except sometimes I am overwhelmed with saddness but then those are the times I search for a positive and thank god it is me suffering as I would never want to see anyone I love .. my family or friends go thru this.. anyone...ever! This was a wonderful topic.. well written!!

Plz.. keep smilin..

You guys are my inspiration. My injury was almost 3 yrs ago, but my first diagnosis was just 15 mths ago, and I left my job for a LOA just 3 mths ago. I'm a newbie at this. I often turn to you all for support and advice. Thanks for always being here. I don't know if I will ever adjust, I still intend in my mind to get better.

I go to NYC this Friday for a ketamine evaluation. I have no idea what I will do if I can't get it because the doctor doesn't believe I have RSD (I only have about a 50% success rate with that), or if it doesn't work. I don't have a Plan B. I finally stopped crying about a month ago. But I don't think the sadness will ever completely go away. I also sent an application to Dr. Getson in Marlton NJ, but it has been more than a few weeks and he has not responded. Bummer. My evaluation with Dr. S is in June 2010.

My therapist asked me last week if I ever get mad about my fate instead of sad. The answer is not really. I don't know why I'm not mad about it. The only time I've ever felt angry is when the WC insurance company interferes with my care.

I agree with Keep Smilin - I am profoundly relieved that I am the one in my family that have RSD. I wouldn't be able to stand it if it was my husband or one of my kids that was suffering like this. I'd much rather it be me.

I am scared to death of the upcoming winter. Just wanted to share that with you all. Has anyone else said that yet? Last year was my first winter with RSD. If the cold wind blew on my head I would wake up vomiting with head pain in the morning. Does anyone else have RSD in their upper back, cervical spine or the occipital area of their head? My RSD spread up from my shoulder (location of original injury), instead of down to my hand (or extremity), which is what most docs are accustomed to seeing. I feel like a freak because my RSD is so very unusual. And most docs haven't seen my kind of RSD before and don't know what to make of it. They want to see a swollen, discolored extremity in order to make a diagnosis - hence, my dismal 50% diagnosis rate.

Thanks for a great thread, MsL. I think many of us appreciate talking about the psychological aspects of RSD because of the monumental toll it has taken on our lives. No one else can quite appreciate how things have changed for us - it really is devastating. Not just because we are in so much pain, but because our livelihoods and sense of purpose have been taken away also. I never expected to "retire" at the age of 48.

XOXOX Sandy

[nancyinLA]

wow! r we all in this together, or what?? i'm soo thkful that if i had 2 fall, it was at work! i've really been taken care of! right out of the cast, i was sent 2 OT, a hand specialist who knows RSD! i was sent 2 a medical psychol. who knows RSD! of course, it took W.C. months 2 approve my PM dr! and i have a neurologist, as i also have epilepsy.

i have absolutely been in those "down, depressed" states..... some days r good & some suck! some days i can drive 2 town fine, some days i drive 2 town & call (crying) my husband who has 2 come & get me. haven't had any ganglion blocks, no scs, not even narcotics! i do take lots of seizure meds, neurontin 1800mg & lexapro. i try 2 stay calm - as all of u know, stress sends me 2 the moon! we built a new hm in the country; it's my haven.....

don't know what's gonna happen w/my job. i'm still employed, at home & receiving my salary. verrrrrry blessed in many ways - we must think of the blessings & positives! 2 all of u - thank u 4 ur support, ur knowledge & encouragement! God is good!

[RottenRSD]

Originally Posted by SandyRI

You guys are my inspiration. My injury was almost 3 yrs ago, but my first diagnosis was just 15 mths ago, and I left my job for a LOA just 3 mths ago. I'm a newbie at this. I often turn to you all for support and advice. Thanks for always being here. I don't know if I will ever adjust, I still intend in my mind to get better.

I go to NYC this Friday for a ketamine evaluation. I have no idea what I will do if I can't get it because the doctor doesn't believe I have RSD (I only have about a 50% success rate with that), or if it doesn't work. I don't have a Plan B. I finally stopped crying about a month ago. But I don't think the sadness will ever completely go away. I also sent an application to Dr. Getson in Marlton NJ, but it has been more than a few weeks and he has not responded. Bummer. My evaluation with Dr. S is in June 2010.

My therapist asked me last week if I ever get mad about my fate instead of sad. The answer is not really. I don't know why I'm not mad about it. The only time I've ever felt angry is when the WC insurance company interferes with my care.

I agree with Keep Smilin - I am profoundly relieved that I am the one in my family that have RSD. I wouldn't be able to stand it if it was my husband or one of my kids that was suffering like this. I'd much rather it be me.

I am scared to death of the upcoming winter. Just wanted to share that with you all. Has anyone else said that yet? Last year was my first winter with RSD. If the cold wind blew on my head I would wake up vomiting with head pain in the morning. Does anyone else have RSD in their upper back, cervical spine or the occipital area of their head? My RSD spread up from my shoulder (location of original injury), instead of down to my hand (or extremity), which is what most docs are accustomed to seeing. I feel like a freak because my RSD is so very unusual. And most docs haven't seen my kind of RSD before and don't know what to make of it. They want to see a swollen, discolored extremity in order to make a diagnosis - hence, my dismal 50% diagnosis rate.

Thanks for a great thread, MsL. I think many of us appreciate talking about the psychological aspects of RSD because of the monumental toll it has taken on our lives. No one else can quite appreciate how things have changed for us - it really is devastating. Not just because we are in so much pain, but because our livelihoods and sense of purpose have been taken away also. I never expected to "retire" at the age of 48.

XOXOX Sandy

Sandy...

I too have a lot of the same problems you have with have the doctors saying you don't have RSD and then many others saying I do. I actually saw Dr. Getson about 2 weeks ago. I had a Thermogram done. Have you had one of those? I was amazed at how clear cut the results were and feel now that any Dr. that says I do not have RSD is a quack. Dr. Getson, told me that my RSD in my leg is more than obvious...which I and many other doctors have seen...but many put in their reports that my leg has no evidence of RSD. Now I feel validated. I knew what was wrong with me...but I have a physical test I can walk in an office with in my hand and say..."here is my thermogram I have RSD what are we going to do about it." I was taken back a little when he told me that what I thought was a pinched nerve in my neck from the accident that flared my leg again is not a pinched nerve but new RSD...not only was I a little surprised, but very surpised that the Thermogram his office does is so intricate that he could tell that.

He was so nice and kind, I said I will probably be back to him in the future for ketamine infusion therapy, but for now to stay the course in my treatment, and possibly consider a SCS...he was right in line with my other doctors, that I have who I finally feel comfortable with. Let me know if you need any names or any help. Keep your head up!

[Imahotep]

Originally Posted by CZZ74

I too have this on going question , debate raging within me. is that anything i can do to make myself valuable again? I speaking in terms of the large annual income i have lost , my company my love of work, of being creative,marketing , etc. I have this conversation frequently with my sister, as early as last week, I was saying , If someone would just hire me to brand their product, provide an at home assitant who could do the typing , put my thoughts on paper, clean them up as I have lost all vocabulary and organizational skills, help me dress, clean up the house, drive me and if these people would allow me to work just for an hour or two on the days I could , Im not kidding I actually had this conversation and have started it many times. My sister sits ,listens patiently says a few uhums and then I noticed her eyes were wet, and then the ricucouslyness of it all hit me yet again. I think that says it all. God love my sister for listening. We both then had a good cry. Professionally, I was my sisters hero, she looked up to me. She is a successful banker now, she used to call me for advice on career moves, not anymore. Its all so depressing.I know I have so much to be thankful for, yes my husband loves me, but he loves a totally different person he cant help it, there is pity in there, it kills me.
So MsL I totally relate, that is why I am seriously considering the pain pump, even though Dr. S told me I can never have surgery,if there is a chance I coud have part of my life back I have to try. cz

This feeling of worthlessness is one of the hardest things for me as well. Ironically I'm doing research now that could have important ramifications for the very survival of the species (more likely it's a crackpot idea) which I couldn't (or wouldn't) even be doing if I were working and healthy yet still I feel worthless because I can't dig ditches any longer. When I cast about for things I could do or learn to do I soon realize that they are all impossible. I can't do even the simplest tasks consistently and the RSD does affect my brain function and memory.

I think everyone who his sick and disabled needs to find passtimes to occupy himself. Even things that can be done on bad days if possible. The internet is a lifesaver for me but I also have a sedentary hobby which can provide enjoyment everyday. My current research is fascinating stuff and keeps me occupied for hours on end. I still try to do my old ditch digging but it seems more everytime that this is something I may have to give up. I tend to get more and more help when such jobs need to be done.

It's funny how things change. My job was never really important to me and it was mostly just the means to a check but I always prided myself on the amount of work I could do. Now I'm just efficient; Can't do much but can get a whole lot done with a minimum of effort and one hand. And I feel guilty about not being productive. The RSD often feels like a box that's closing in on me.

For me this disease is about learning new ways to cope and new ways to do things. There are lots of days I shouldda stood in bed but there's no choice but to follow the road as far as is possible.

[CZZ74]

[QUOTE=Imahotep;569960]This feeling of worthlessness is one of the hardest things for me as well. Ironically I'm doing research now that could have important ramifications for the very survival of the species (more likely it's a crackpot idea) which I couldn't (or wouldn't) even be doing if I were working and healthy yet still I feel worthless because I can't dig ditches any longer. When I cast about for things I could do or learn to do I soon realize that they are all impossible. I can't do even the simplest tasks consistently and the RSD does affect my brain function and memory.

I think everyone who his sick and disabled needs to find passtimes to occupy himself. Even things that can be done on bad days if possible. The internet is a lifesaver for me but I also have a sedentary hobby which can provide enjoyment everyday. My current research is fascinating stuff and keeps me occupied for hours on end. I still try to do my old ditch digging but it seems more everytime that this is something I may have to give up. I tend to get more and more help when such jobs need to be done.

It's funny how things change. My job was never really important to me and it was mostly just the means to a check but I always prided myself on the amount of work I could do. Now I'm just efficient; Can't do much but can get a whole lot done with a minimum of effort and one hand. And I feel guilty about not being productive. The RSD often feels like a box that's closing in on me.

For me this disease is about learning new ways to cope and new ways to do things. There are lots of days I shouldda stood in bed but there's no choice but to follow the road as far as is possible.

I can't do even the simplest tasks consistently and the RSD does affect my brain function and memory.

Ima, you have brought something up here that I work very hard at hiding. The severe memory problems are harder to hide, but the brain function- I am frightented when even a family member says" I think you should have help with that decision" It like -WHOA wait a minute my body is sick not my mind, I am terrified ( and threatnened )someone down the road is going to try to take away control of my life from me- due to diminished brain function due to rsd or meds. SCARY. Does anyone else secretly have these fears? The opana er really helps my pain, but I must say the side effect are not good in terms of staying sharp, no matter how many crossword puzzles I try to do. anyone else? cz