I don't know you everyone on here seems so okay with the pain, I know thats not true, but my pain eats at me through the whole day. I feel like I never have a positive look on things and it's getting to the point where the people I talk to are getting tired of the same thing. I feel lost.

because it does seem that way. I think after a while I learned to live with the pain. Get used to it, so to speak. The pain is always in my life: I have it when I get up in the morning, when I shower, when I brush my teeth, I have it when I eat, read the newspaper, watch tv, talk to family, drive a car, and when I hold my granddaughter. I also know it is probably not going away. So I figured out how to live with pain. It is not an easy thing to do, but I think that most people learn that fighting it, and do not get me wrong I still fight the hell out of it, sometimes makes it worse. I guess what I am saying is I accept that I hurt. I accept that I will for the rest of my life. Accepting it is difficult, but I did it. Now I concentrate on my granddaughter and do my best to ignore the pain as best as I can.
I hope I helped.

We are all paddling in the same boat, just with our own funny shaped oar! I have grown so tired of the pain, all the limitation, my sense of fear that thing will get worse or just never get better. I keep most of it to myself but, check these sites and read all the stories of struggle and loss and pain. Then I know I am not truly alone. I wish I had the magic pill that would make it all go away. But there isn't one. So I just keep passing through my painful days hoping tomorrow will be better so I can go on again. we will survive somehow and try to learn little things from each other that help us keep on keeping on...

None of us are "ok" with it. I know for myself ive just SLOWLY learned to live with it some how. Theres not a moment im not in pain. I dont even remember what its like to not live in pain, so maybe thats "helped"?. Im young and for a very long time it made me angry that it took away my teen yrs and now my young adult yrs. But i learned that being angry all the time wasnt going to get me anywhere eather. I had to go threw the grieving prosses, that is very important. And there are still times that i do grieve and there are still days that i get tired, tired of it all, ready to throw in the towel and say screw it im done, but then i turn that into strength and i fight, because I will NOT let this beat me down. Im constantly doing my research and trying to find ways to get the help i need and treatments. There are days that the pain is so bad i feel like its just eating at me, or so bad that it can make me vomit, and on those days i medicate with the meds i can take and i sleep and rest because thats all i can do on those days. I dont talk about any of my crap anymore because most people dont understand it. I have 1 friend that does and she is the one that i can talk to and shes been an amazing friend, but she is the only one that i talk with about any of this. So turn all that into fighting! Do your research and fight to get the help you need!

Hey fresh.. I get through my days mostly just by accepting this is my life. I cant stop tomorrow from coming so I might as well move on.. its such a fight. most times I fight back the tears from the pain then some times I fight the tears from the sorrow. its hard not to feel like you've lost a preciouse part of your life . because you have but I wake up every day, and I do the best I can.
some days it is just laying on the couch not moving because if I do its hell times infinity.. but I have a new perspective on life that others do not.
we all share this, we just need to learn what to do with this.
you are not alone in your feelings. we all share them, and we are NOT ok with tho. but for right now we cannot change the fact that we have this beast. so we fight the fights we can, make friends with others with this so we can have help fighting it and then help others cope as well. I hope this helps. my mind is a little frazzled right now. pain levels up past ten today ..times 1000. so you can imagine getting a clear thought out is hard.. lol wait you dont have to imagine..
please be well and bring your fears to this forum so we may share , care , and help.

I think for me, I havent had a day without pain in forever. So finally after diagnosis reality set in, its not changing, so i have to learn to live with it. Slowly i am. I will say i was MUCH more negative before anti depressants. So maybe thats something you should talk to them about if you are not on them.

I battle with things still, and some days i stay in bed because i just cant deal. But every day i try to see as a new day, and do my best to get through it.

I hope you can find ways to cope. I read a lot, i bake ( sitting in a stool, and one handed) sometimes. I do things that i can, and dont do the things i cant. I have to set some boundries, but overall i am still living a "normal" life, most people dont even realize how disabling it really is.

I will be praying for you.

Some of us are better at hiding it than others. I was 8 years old when my Grandmother died and like any 8 year old I started crying at the viewing well after a few minutes my dad takes me out back of the funeral home tells me I got 10 minutes to Man up and get that sissy crying stuff out of my system and get back in there and help the women folk or keep the sissy stuff up and you go sit with the women and the sissy's 10 minutes later I has handing out tissue to the women and other male cousins that failed to Man up. My wife has seen me cry 3 times in twenty years once when my daughter was born and twice in the E.R. Now my wife has learned how to read me to figure out how much pain I am in or at least has a ball park Idea, Now my job does not allow any psych meds No Pain meds heck I'm limited on what I can take for a cold, had to fight just to be able to take Gabapentin with out it I couldn't function, and the last four days has been hell as thing's were flared up which seem to happen with out rhyme or reason and ever time I think about throwing in the towel and calling to doctor for some of the pills they want me to be on I think back to being that 8 year old boy out back of the funeral home and I man up Drive on. Now I'm not knocking anybody for taking meds they need heck wish I could take some but I like my job and this damn disease/syndrome is going to rob me of it sooner or later, it could be as soon as the next flare up it might be 20 years down the road I just don't know But you can bet the farm I won't cry about it.

I'm probably more or less reiterating what everyone else has said, so I apologize if this is repetitive. I'm not okay with it. None of us really are. I know that we'd all love to have more days with less pain...ultimately pain-free days. As of right now, the only thing we really can do is "deal" with what we've got. We didn't ask for this disorder, but since we do have it, having the best outlook about it and managing it to the best of our abilities is what's ultimately happening. I'm not okay with the pain. I'm in college with a full schedule, all of my labs, homework (another issue for another day), and two campus jobs in the admissions office and in the English department. I also have nights where I have to pull legitimate all-nighters (on top of the lack of sleep I get from the RSD alone) so that I can pass my tests and not fall behind on classwork. I'm not anti-social, but I'm introverted and kind of keep things to myself. In a sense, it's a bad habit, but in another sense, it's my saving grace. I'm responsible for myself, so I don't have to worry about others keeping tabs on me (well...except for a professor who is concerned when I don't get enough sleep, whether it's from RSD or classwork). I constantly have to remind myself that I have 15 English 101 students who depend on me and don't care if I'm in pain or not, bosses who expect me to be at work, professors who expect us to be in class, etc. These all keep me going and result in my "optimism" and positive outlook throughout the day. I want to be able to have as normal of a life (if "normal" is possible haha), so I cope by internalizing and having the occasional night where I just cry. It might not be the best method, but it's gotten me through the 6.5 years I've had RSD.

Yep, as the others have already said, none of us are "ok" with this constant pain. We just each learn how to deal with it and how to keep going. I am currently seeing a counselor, which helps greatly to talk to someone other than my husband, family or friends. My husband is incredibly supportive, helpful and empathetic (I am very lucky in that respect), but he can only help me to a point.

I have been suffering with this for 21 years now. I was 25 when first diagnosed and now it has spread quite a bit. The good thing now vs. 21 years ago is that there is more information out there about it and there is support.

I am struggling with this myself, more lately since new spreads. But I find comfort in the fact that I am not alone in this journey and there is support here and at home for me.

All the best,
Nanc

hi,yes the pain is hard to deal with as is life.In my case after just been diagnosed after 31months; i'm now going to change my life back around.I'd already stopped all my medication as it was not working but also it was just as bad for me mentally.I haven't worked since my accident,driven a car and pretty much been a prisoner in my own home.Friends seem to lose interest as you can't go out and do what you used to and it's not the same when you do being restricted to what you can do.I feel upset when I see you all suffering and it's us who only know what it's like.I think it's just as painful people not understanding what we're going through,"oh,you're not better yet,why don't you get your leg cut off"people joke but is that funny???
Well you're not alone and I think the people on this site generally care,I know I do.When you get down think it could be worse,you could not be here,the pain shows at least we're alive!
Bon-courage a tout,Anthony John the English in France