Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-02-2014, 02:58 PM #21
tos8 tos8 is offline
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Ive gotten GOOD at hiding it, hiding everything. Theres so much going on with others in my family that none of my family would relies anyways. They know I have both conditions, but they think its managed by meds and don't ask anymore about it and continue to ask or not ask and have me do whatever. And I gotta say it can be HORRIBLE! Just because im fantastic at hiding everything, doesn't meen its a good thing. Not when im SO exhausted that I just want to be done, when the pain is so bad and I could just hide away. They will even say things like "You don't look good today", but as long as I say "im fine", no more questions asked then. I can once in awhile "blow up" like today and tell them whats going on because there pushing my to the edge, but then they just say things like "Just get your meds upped". Its not that simple and I don't want my meds upped. My meds make me more tired and I cant be more tired when im already exhausted. And my meds don't take away the pain, they can help take the edge off, but that's about it.

Vrae im glad you have your daughter that recognizes when your down. Shes observant and really cares. That's important! She holds a lot of great qualities that most people don't have.
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Old 04-02-2014, 08:10 PM #22
Llynnyia Llynnyia is offline
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Originally Posted by tos8 View Post
Ive gotten GOOD at hiding it, hiding everything. Theres so much going on with others in my family that none of my family would relies anyways. They know I have both conditions, but they think its managed by meds and don't ask anymore about it and continue to ask or not ask and have me do whatever. And I gotta say it can be HORRIBLE! Just because im fantastic at hiding everything, doesn't meen its a good thing. Not when im SO exhausted that I just want to be done, when the pain is so bad and I could just hide away. They will even say things like "You don't look good today", but as long as I say "im fine", no more questions asked then. I can once in awhile "blow up" like today and tell them whats going on because there pushing my to the edge, but then they just say things like "Just get your meds upped". Its not that simple and I don't want my meds upped. My meds make me more tired and I cant be more tired when im already exhausted. And my meds don't take away the pain, they can help take the edge off, but that's about it.

Vrae im glad you have your daughter that recognizes when your down. Shes observant and really cares. That's important! She holds a lot of great qualities that most people don't have.
I am so sorry to hear this, it is so hard I know. Sometime family is so wrapped up in there own newest crisis that they don't stop to understand whats really going on. It literally took me becoming homeless for my own father to get it and to stop the republican mantra takers! fakers and lazy too! He is so much more supportive now. The first person who got it was grandma because I stopped coming over to see her, even when she baked me my favorite pie (cherry) no one else in the family likes them.

Ya the just take more pain pills try getting more meds out of a doctor for one, two maybe that is not in your best interest .
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Old 04-02-2014, 08:47 PM #23
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Oh tos, I’m so sorry hon. It is so so hard. No one who doesn’t have this will ever truly get it, which is why I am so very grateful for everyone on this site. When you talk about your exhaustion.. wow do I know what you mean. Crazy tired.

The “you don’t look good today” reminds me of something I saw recently… We may look ok some days, that doesn't mean we are not in the worst pain imaginable. One thing we do is to try our best and hide it. Would you rather we looked like rubbish every day? We get scrutinized when we look fine, but also when we don't!
'You don't look sick or anything...well you don't look stupid. Looks can be deceiving'


Hang in there hon! We’re here for each other!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 04-02-2014, 09:22 PM #24
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Exactly! And typically "when im not looking good", its usually when ive hit rock bottom and in desperate need of a break from everything. Im also a caregiver to family, and I think that's more important to them then, well me. Maybe that's why they don't ask. If I say im tired, sick or need a break then they don't have there help anymore. I threaten to move out and alls I get it "but we really need your help". And then when I finally unleash half the crap im feeling and dealing with, well then its "well just get your meds upped". I don't feel like theres any regard for me anymore. I used to know who I was and where I stood, I had friends, worked, a life. And all that was taken away and well I guess most normal people cant get that. They cant get how life changing that is, to have your life taken away from you. To have everything you thought you knew, just wrong. Life that seemed decent, turned completely upside down. And if I have trouble getting all of this crap, understanding it when I do deal with it, then how can they have any understanding when there not going threw it at all.



Quote:
Originally Posted by Vrae View Post
Oh tos, I’m so sorry hon. It is so so hard. No one who doesn’t have this will ever truly get it, which is why I am so very grateful for everyone on this site. When you talk about your exhaustion.. wow do I know what you mean. Crazy tired.

The “you don’t look good today” reminds me of something I saw recently… We may look ok some days, that doesn't mean we are not in the worst pain imaginable. One thing we do is to try our best and hide it. Would you rather we looked like rubbish every day? We get scrutinized when we look fine, but also when we don't!
'You don't look sick or anything...well you don't look stupid. Looks can be deceiving'


Hang in there hon! We’re here for each other!
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Old 04-02-2014, 10:00 PM #25
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Originally Posted by tos8 View Post
Exactly! And typically "when im not looking good", its usually when ive hit rock bottom and in desperate need of a break from everything. Im also a caregiver to family, and I think that's more important to them then, well me. Maybe that's why they don't ask. If I say im tired, sick or need a break then they don't have there help anymore. I threaten to move out and alls I get it "but we really need your help". And then when I finally unleash half the crap im feeling and dealing with, well then its "well just get your meds upped". I don't feel like theres any regard for me anymore. I used to know who I was and where I stood, I had friends, worked, a life. And all that was taken away and well I guess most normal people cant get that. They cant get how life changing that is, to have your life taken away from you. To have everything you thought you knew, just wrong. Life that seemed decent, turned completely upside down. And if I have trouble getting all of this crap, understanding it when I do deal with it, then how can they have any understanding when there not going threw it at all.
All I can offer is a sympathetic ear and a virtual hug!
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Old 04-02-2014, 10:11 PM #26
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Originally Posted by Llynnyia View Post
All I can offer is a sympathetic ear and a virtual hug!
..and this is what is needed most. I like hugs lol
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 04-02-2014, 10:55 PM #27
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Originally Posted by Brambledog View Post
What a rambling load of piffling waffle lol. It's very early here and my chicken has just spent the last half hour squawking as though being stabbed repeatedly in the bum with a fork. Always a sign that it's time to start shutting them in again as the mornings get lighter! Im very impressed by our neighbours' ability to cope. I wanted to scream an obscenity out of the window myself, and she's my damn chicken!!!

LMAO!! oh wow Bram.. too funny! Yes dear, shut them in, or I'm going to worry about you, lol or perhaps the chicken.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 04-03-2014, 01:27 AM #28
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I just wanted to let you know that I hope you're feeling better today Vrae. You deserve a break.
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