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 07-07-2010, 01:56 PM #11
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Default Hi Jim,

I'm glad she has you to help her deal with the Drs. It took Bill a long time to understand what I was going through but he was already disabled at the time. He was good about helping me though. He waited on me even though he was not able to. He would get angry too because of the crap I took from the Drs. I saw.

Do you mean handling paperwork such as dealing with it. I am the same. Bill took care of the bills and bank book because it stressed me out so bad. After he died Susan helped me with them. I now do some myself but I have so damn much trouble dealing with paying bills. As far as my paperwork on medical records, I don't even look at them anymore when they are sent to me. When I have to fill out questionaires, I have to have help with them. My brain just doesn't want to acknowledge that paperwork is a necessity of life. Too bad the people that send them to me don't get it.

There's nothing wrong with seeing a Psychologist. The way I see it, they are someone to talk to that doesn't divulge what you say. I can ***** about anyone I want and he won't tell them. LOL He does help me figure out how to deal with issues I don't know how to. He keeps my feet planted on the ground when I want to up and run from things I can't cope with.

I do believe that people going through what we all go through need some help mentally. I see it on here often where a person needs more help then we can give each other here.

Ada
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Old 07-07-2010, 02:12 PM #12
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Originally Posted by dreambeliever128 View Post
I'm glad she has you to help her deal with the Drs. It took Bill a long time to understand what I was going through but he was already disabled at the time. He was good about helping me though. He waited on me even though he was not able to. He would get angry too because of the crap I took from the Drs. I saw.

Do you mean handling paperwork such as dealing with it. I am the same. Bill took care of the bills and bank book because it stressed me out so bad. After he died Susan helped me with them. I now do some myself but I have so damn much trouble dealing with paying bills. As far as my paperwork on medical records, I don't even look at them anymore when they are sent to me. When I have to fill out questionaires, I have to have help with them. My brain just doesn't want to acknowledge that paperwork is a necessity of life. Too bad the people that send them to me don't get it.

There's nothing wrong with seeing a Psychologist. The way I see it, they are someone to talk to that doesn't divulge what you say. I can ***** about anyone I want and he won't tell them. LOL He does help me figure out how to deal with issues I don't know how to. He keeps my feet planted on the ground when I want to up and run from things I can't cope with.

I do believe that people going through what we all go through need some help mentally. I see it on here often where a person needs more help then we can give each other here.

Ada
I agree, I think it would be great if she would see someone to help her mentally deal with RSD, but she wont. I even suggested we both go. I now do the bills because of the stress she and I have dealing with the bills with no health insurance. But it is the handling of paper that hurts her, the feel of it on her hands that places her in pain as strange as it may seem.
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Old 07-07-2010, 02:37 PM #13
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Default Hi Jim,

Some paper does feel different. You could equate what she is going through with paper as to what a lot of us go through with sheets on the bed. I had to get rid of some sheets because they just felt so rough. It's kind of like that play, " Once upon a Mattress" We could most likely feel that pea under all of those mattresses due to our heightened sense of sensitivity.

It would be good for both of you to go to councelling. Bill started going a few years before he passed away. I think that's why he was even more understanding of what I was going through. Of course you have to watch what Psychologist you go to. The first one he went to was going through a divorce and he actually made things worse. I also had a woman that was going through a divorce and she thought she had more problems then I did. Don't let me scare you off though, there are some damn good ones out there. I've been in councelling since around 98 and boy what a difference it made. It helped clear my head so I could concentrate on my physical health.
Our head has to be clear so we can help figure out what to do to help with the medical care.

Ada
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Old 07-07-2010, 02:45 PM #14
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Originally Posted by dreambeliever128 View Post
Some paper does feel different. You could equate what she is going through with paper as to what a lot of us go through with sheets on the bed. I had to get rid of some sheets because they just felt so rough. It's kind of like that play, " Once upon a Mattress" We could most likely feel that pea under all of those mattresses due to our heightened sense of sensitivity.

It would be good for both of you to go to councelling. Bill started going a few years before he passed away. I think that's why he was even more understanding of what I was going through. Of course you have to watch what Psychologist you go to. The first one he went to was going through a divorce and he actually made things worse. I also had a woman that was going through a divorce and she thought she had more problems then I did. Don't let me scare you off though, there are some damn good ones out there. I've been in councelling since around 98 and boy what a difference it made. It helped clear my head so I could concentrate on my physical health.
Our head has to be clear so we can help figure out what to do to help with the medical care.

Ada
Thanks for the advice Ada, I've been working on it slowly but surely!
I'd like to mention my mother's middle name was Ada. Named after her grandmother.
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Old 07-07-2010, 07:51 PM #15
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Default Hi Jim,

I use to hate my name. I thought years ago about getting it changed. Now it fits me now that I'm older. I guess it's an old persons name. LOL I have had people to tell me they like my name here lately. I had a girl email me on facebook just to tell me she really liked my name. I guess it grows on you.

I hope your better half does get councelling. It is very calming to be able to call up your councellor or go and see them to help you deal with stressful situations. I had plenty of them with Bill. I think we take things out on the ones we love.

To get back to the video. This might sound crazy but I sometimes question wheather some people are really wanting to make people more aware of RSD or do some just want their 20 minutes of fame. Not saying that these people are but sometimes I think people lose sight of the real purpose such as on some of the reality shows we see on tv. Their fame becomes more important then their causes at times.

I wish more people would jump on the bandwagon of the most popular RSD associations instead of starting so many that we are inundated with them. I am seeing that on facebook. The money too is being split up through so many groups that a lot of it is getting lost in the groups. We have seen that in catastropies that happen. Not all of the money goes where it is meant to go.

These Drs. are getting their 20 minutes of fame too by jumping in there with a few select patients that swear by them. If blocks were the answer to the cure, how many of us would be cured?

Ada
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Old 07-07-2010, 11:08 PM #16
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Hi Jimking and Ada,

Along this road that I have taken with my young daughter, I have had many a doctors suggest Psychotherapy, one reason this person is completely out of the loop. She can talk to them about anything and anyone. Some of us do not know how your pain feels. We are the caretakers, you have the pain. Talking to someone else that can help you though this pain I think is a great idea. My daughter now refuses, she has had therapy in the past. Most of the therapist say the same thing. Teach her ways to cope. So I think that it is a good idea to have the middle man give advice and you can complain about anything and it is confidential!

I love you all and I hope you have feel better soon.

Sandy


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Ada, my wife's gone through exactly what you have. She tried to do it alone with no luck. With her shyness she would drop hints to me and being a guy it took sometime for me to get it. Once I did I now fight for her constantly. No, all doctors where no good to her and didn't like her, just the one she has now which wouldn't treat her if I wasn't around and it disturbs me to no end. My wife absolutely freaks out when someone questions her mental capacity, has been told to see a shrink several times because of her pain and her association with incidents that equate to bad pain, but doctors don't understand. One thing that hurts her is handling paper, why? She worked for 4 years with RSD doing office work. The handling of paper overtime hurt her badly but when she explains to the doc this paper pain thing they think she's a nut. She has steadfastly refused to see a psychologist and its hurt her.
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Old 07-08-2010, 08:06 AM #17
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Hi Jimking and Ada,

Along this road that I have taken with my young daughter, I have had many a doctors suggest Psychotherapy, one reason this person is completely out of the loop. She can talk to them about anything and anyone. Some of us do not know how your pain feels. We are the caretakers, you have the pain. Talking to someone else that can help you though this pain I think is a great idea. My daughter now refuses, she has had therapy in the past. Most of the therapist say the same thing. Teach her ways to cope. So I think that it is a good idea to have the middle man give advice and you can complain about anything and it is confidential!

I love you all and I hope you have feel better soon.

Sandy
I am really enjoying this post..Each of you have really got a great insight on what is important..I tell you..I fought it..shouting and a screaming when my Dr. recommended me to talk with someone..The ole' preverbial.. I am not crazy and I gotz this all under control..Well..now after seeing my councelsor for almost a year..I would not trade my 1 hour session for anything..Sometimes I say..ok not about me this time..lets hang out and talk about you! It always turns back to me but I had good intentions! Bottom line is..living with RSD, whether it is you with it or your family member..it is life altering..devestating and down right relentless..a neutral party to give us time to just visit is worth a million..it buys us time and a piece of mind..At some point in every disease..I think it is a must. I am giving my next appt. to my husband hoping he will go but if not..in his own time as just with everything else..the time has to right...

Bless you all..and I too love each of you..

Kathy
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Old 07-09-2010, 11:21 PM #18
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I don't agree with what the doctor says in this. He says there is a simple test to see if you have RSD. If a nerve block doesn't help you immediately you don't have RSD??? I bet there are many of us on here who could not do jumping jacks after getting a block done, and we DO have RSD...

I had blocks. Color changed, hand warmed up. Pain didn't change because by then I was SIP.

I find the limping girl who does jumping jacks after injection a little.... umm... I don't know. Disconcerting? Demeaning? Something about it bothers me.
I agree, made it look so simple to get pain relief, if only it was that easy....
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Old 07-11-2010, 06:06 PM #19
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I don't agree with what the doctor says in this. He says there is a simple test to see if you have RSD. If a nerve block doesn't help you immediately you don't have RSD??? I bet there are many of us on here who could not do jumping jacks after getting a block done, and we DO have RSD...

I had blocks. Color changed, hand warmed up. Pain didn't change because by then I was SIP.

I find the limping girl who does jumping jacks after injection a little.... umm... I don't know. Disconcerting? Demeaning? Something about it bothers me.
*************************************************

I disagree with the reasoning behind your disagreement (HA ! That'll be fun to figure out for all of us with brain fog ! )

I'm not suggesting that jumping jacks after a nerve block is the norm, but I do think your 'nerve block didn't work for me ' actually helps make that doctors arguement. The color and temperature in your affected arm immediately changed with the nerve block. That is diagnostic 'proof' of RSD

It's a bummer that your condition was too far gone for the nerve block to help with the pain. Nerve blocks were similar for me.....the pain was only better for a few hours thanks to the lidocaine, then the pain was right back. The SGB's do help with the numbness/tingling and ache down my left arm as well as the sweating though
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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