[painman2009]

so today I went to spine specialist, normal pain levels ..around 8 and a half to 9 .. during exam it was going as usual, until she asked me to lean forward. mind you it didnt happen quite immediately but it was to quick for me to adjust.
when I bent over I lost balance a little and had to use the front part of my foot.( i never use it because it is the worst and primary area of RSD) electricity hit so I stood up, as I was going back to my chair is when it happened, the pain chattered me. from the toes to my groin to my hands and back through my other leg landing in my foot. so quick so bad I couldnt control my self. tears ,then full on cry. It was humiliating. I usually do pretty good at controlling these things, even when I dont it will build up so I can find solace first. for almost two hours it took for me to gain control. and the pain is still rattling on now but ive regained control. Now im not the one who was brought up as boys dont cry, I still grew up learning to control myself as to not make others uncomfortable . I need a cane which took time to get adjusted as far as embarassment goes, then a walker which I still cant use with out feeling embarrassed, as well as the scooters in stores. Im not used to not having control over my body, (still) its a hard hit, and today I felt my weakest since the start of this madness, then topping all this off Im having issues getting another 3 phase bonescan done (no one is doing them) and comp just said(finally) that I can see a pain shrink again. Ive only been waiting years for that.... Icant even get to sleep to escape this crap in a dream that I probably wouldt remember. My life on my couch or chair despite the fact that I push myself to extremes, im still no where as active as I used to be, missed events because of the walking I would need to do, like hershy park or disney, they all went and I stayed home, parties , because I stay home because the music vibrations cause too much pain, carnivals(music and walking) the beach, the waves, the rocks and sand. even gardening stolen away,
If some-one tells you RSD isnt real share all of our stories so it can help people see just how real it is

[catra121]

I am SO sorry! I have had those moments...they come so quick and there's just no way to control what happens next. We can't help but react to certain movements in certain ways and those natural reactions can cause so much pain. I hope you recover quickly from this incident. Even though it took far too long I am happy that you are finally able to go back to a "pain shrink" and I really hope they are able to help you through this. I know it's been a very rough time for you. Take care of yourself and know we are here to support you if you need us.

[Djhasty]

Painman
Sorry for your terrible pain today. Just wanted to let you know I can relate. This syndrome is so frustrating. Not only for the horrible pain but for the limitations it brings. I understand your humiliation and embarrassment, though I will tell you that you needn't be either. I believe most people are understanding. Although I too am often humiliated and embarrassed by the disease and the attention it brings. For me it is the beach. I miss walking on the beach and playing in the sand, especially now that I have my Grandchildren. I miss the beach more than anyone will ever know. My thoughts are with you today. I am hoping for better days ahead for you.

Originally Posted by painman2009

so today I went to spine specialist, normal pain levels ..around 8 and a half to 9 .. during exam it was going as usual, until she asked me to lean forward. mind you it didnt happen quite immediately but it was to quick for me to adjust.
when I bent over I lost balance a little and had to use the front part of my foot.( i never use it because it is the worst and primary area of RSD) electricity hit so I stood up, as I was going back to my chair is when it happened, the pain chattered me. from the toes to my groin to my hands and back through my other leg landing in my foot. so quick so bad I couldnt control my self. tears ,then full on cry. It was humiliating. I usually do pretty good at controlling these things, even when I dont it will build up so I can find solace first. for almost two hours it took for me to gain control. and the pain is still rattling on now but ive regained control. Now im not the one who was brought up as boys dont cry, I still grew up learning to control myself as to not make others uncomfortable . I need a cane which took time to get adjusted as far as embarassment goes, then a walker which I still cant use with out feeling embarrassed, as well as the scooters in stores. Im not used to not having control over my body, (still) its a hard hit, and today I felt my weakest since the start of this madness, then topping all this off Im having issues getting another 3 phase bonescan done (no one is doing them) and comp just said(finally) that I can see a pain shrink again. Ive only been waiting years for that.... Icant even get to sleep to escape this crap in a dream that I probably wouldt remember. My life on my couch or chair despite the fact that I push myself to extremes, im still no where as active as I used to be, missed events because of the walking I would need to do, like hershy park or disney, they all went and I stayed home, parties , because I stay home because the music vibrations cause too much pain, carnivals(music and walking) the beach, the waves, the rocks and sand. even gardening stolen away,
If some-one tells you RSD isnt real share all of our stories so it can help people see just how real it is

[Brambledog]

I'm so sorry you had such a nightmare appointment. Know just what you mean. It's awful isn't it? We know we shouldn't feel embarrassed because it's something we cannot control and didn't ask for, but we still do. I hate that you can tell that they just don't 'get it' as well, even when you are clearly in extreme pain and distress sometimes. I know they have the whole calm and rational doc act going on for our own good, but sometimes it would be nice for a bit of human sympathy at such times when you just feel completely beaten by the CRPS. As you say, it takes a while to gain control again...

No one but another sufferer can know how bad the pain and loss can be. I've only been living with this thing for nearly two years, but I've lost so much already and the future is a frightening place I don't like to think about too much. Some very bad days I don't know how much more I can bear. Most days I'm ok, but I can't remember my last really good day with it. Sad and frustrating

Try not to feel so bad, and feel proud of yourself. You are not a complainer or a wimp, this condition is horrible and at times does just strike you down to a really low point. Most days you cope with everything and try to protect other people from having to deal with ots effects, you are allowed the odd (involuntary) time off that constant effort. I'm glad you were with a doc at the time this happened and not alone, but obviously the exam itself prompted the whole thing... I don't know. Cruel doesn't begin to describe such times.

I miss walking with my husband, children and dog. I miss independence and being able to go shopping in my local town without having someone with me to control my wheelchair on the nightmare sloping pavements! Beaches, running up the hill from school with my youngest, sports, tourist type exploring....so many things. Mostly I just miss being active, getting stuff done and being the one in control. My poor husband has to do so much now on top of working, and although he tries his best I feel like the whole house is shouting at me for attention.

Take care of yourself for now and give your body time to get over the shock of that experience, it must have really shaken you up. Things will settle down a bit again, and you will pick yourself up again. We know how hard that is to do though...

Having a bad day here, my foot is awful lately and I cannot get away from it. Thought my knee was bad, but the foot thing is so much worse right now. I've just put a patch on and I'm desperate for it to soothe things just a tiny bit. So fed up today....but tomorrow might be better, you have to keep hoping

All the best, hope you feel better very soon

Bram.

[painman2009]

Originally Posted by Brambledog

I'm so sorry you had such a nightmare appointment. Know just what you mean. It's awful isn't it? We know we shouldn't feel embarrassed because it's something we cannot control and didn't ask for, but we still do. I hate that you can tell that they just don't 'get it' as well, even when you are clearly in extreme pain and distress sometimes. I know they have the whole calm and rational doc act going on for our own good, but sometimes it would be nice for a bit of human sympathy at such times when you just feel completely beaten by the CRPS. As you say, it takes a while to gain control again...

No one but another sufferer can know how bad the pain and loss can be. I've only been living with this thing for nearly two years, but I've lost so much already and the future is a frightening place I don't like to think about too much. Some very bad days I don't know how much more I can bear. Most days I'm ok, but I can't remember my last really good day with it. Sad and frustrating

Try not to feel so bad, and feel proud of yourself. You are not a complainer or a wimp, this condition is horrible and at times does just strike you down to a really low point. Most days you cope with everything and try to protect other people from having to deal with ots effects, you are allowed the odd (involuntary) time off that constant effort. I'm glad you were with a doc at the time this happened and not alone, but obviously the exam itself prompted the whole thing... I don't know. Cruel doesn't begin to describe such times.

I miss walking with my husband, children and dog. I miss independence and being able to go shopping in my local town without having someone with me to control my wheelchair on the nightmare sloping pavements! Beaches, running up the hill from school with my youngest, sports, tourist type exploring....so many things. Mostly I just miss being active, getting stuff done and being the one in control. My poor husband has to do so much now on top of working, and although he tries his best I feel like the whole house is shouting at me for attention.

Take care of yourself for now and give your body time to get over the shock of that experience, it must have really shaken you up. Things will settle down a bit again, and you will pick yourself up again. We know how hard that is to do though...

Having a bad day here, my foot is awful lately and I cannot get away from it. Thought my knee was bad, but the foot thing is so much worse right now. I've just put a patch on and I'm desperate for it to soothe things just a tiny bit. So fed up today....but tomorrow might be better, you have to keep hoping

All the best, hope you feel better very soon

Bram.

Thank you guys: I know this is tough on us all that is why I share my angst here, misery and company and all, plus I really dont want the atypical response of those who do care but really dont understand, (i.e.) sorry.. wish I could help.. some days my wife gets it right and just goes through the day as if this doesnt exist. Most of the people treat me like Im fragile, incapable. (it may be true but still) im not helpless. I need to try doing things, I need to feel normal as much as possible.
Ohh the comment about the gouse shouting out for you.. I get that. the kids try to help but they are kids after all so its not done right or barely at all some times, still they are good kids and do more than the average, and I feel bad for them. also the dr,s reaction. I didnt even think about it till now. you are right about them being cool and unfeeling. a whole office filled with 12 doctors did nothing.. lol funny I needed some-one to say something for me to realize that..all well. I dont need their sympathy just need them to do their job. I hope you all feel better and are dealing with this nasty weather well.

[alaska49]

I am so sorry for you, with all the pain you mention I can feel it in my body just as you discribe. Whenever I hear of others pain it makes me feel so bad and wish I could help, although knowing Iam not much better then anyone else. I know how you feel when you feel embarrsed, when I go see movies and or go out and using a walker since I wa 22 and am now still just 25 I wonder how other think of me. But then I just say to myself on how much I have gone through and how strong we all are for being in the conditions we are but are still trying our bests to live life.
I am here for you and hope for pain relief!

Samantha

[KathyUK]

Oh sweetheart, I am so sorry you had such a tough day. Don't fall for the bull of boys not crying - noone with a decent soul will think badly of you for it and I'm a big believer that bottling it too much can make things worse. Cry all you like, we understand. I'm just sorry it got to the point where you felt so bad.

I know how you feel about the stick and the walker situation too - I'm currently looking online for a new walker and it's really bothering me that I'm spending money on something I am embarrassed to have - I've been fighting against using the one I have (NHS freebie, very grannyfied) and suffering for it like a fool. But have it I must! And if it means I keep my independence, I'll pimp it up so people are jealous of my smokin' wheels, and start underground racing a la Tokyo Drift. When I first got my elbow crutches, I made light of it by tying scarves around them and saying I was in Aerosmith.

[lil-bug]

I am so sorry that you feel this way! You are not a wimp. It takes a very strong person to deal with this disease! Sometimes I wish I could lay my hand on someone to let them get a small glimpse of the pain I am dealing with when they look at me crying. Don't get me wrong I wouldn't wish this on my worst enemy, however just a touch of the pain and then take it back.

I just got diagnosed and am wondering how I am going to handle this being only 36. Looking at how many things I am going to miss and am already missing. When I tell people what I have no one seems to have heard it. I just give them a link to go and read it for them selves now. My primary doctor had never even heard of it .

Again you are not a wimp, you are very strong!!!!!

[painman2009]

I look back on all my short years . I have worked since I was 9, when I was in college I held one full time job and 2-3 part time jobs basically living out of my car just to make a buck.started a family young(always struggled) but that was alright, god would see us through what we need, I always believed that still do. my fourth child was concieved and all of a sudden im having surgery once a year then a work accident , followed by this last accident. and in the beginning of this injury I said to myself .."god is telling me to slow down" but now my younger boys are crying( why cant you) my daughter is finnaly at the stage of her life where she truly can use a "complete" father . and I find myself asking.what is the point of it all now what is the lesson to be learned. It is in there I know it is. I get to meet people with good hearts, such as yourselves here. I can see more clear the world around us. and I am sure there is more. but the price of these lessons is huge . and it is worse because my children have to pay part of it.
sorry that came from left field, the mind drifts on auto pilot sometimes. what I really wanted to say is thank you all and god bless