Misdiagnosing Pain video
 

This came in the RSDSA newsletter today. Great video.

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For Grace Earns Emmy Nomination

For Grace is thrilled to announce that a FOX Los Angeles news segment that For Grace championed has earned an Emmy nomination in the Medical catagory. This powerful five-minute segment, titled "Misdiagnosing Pain", highlights gender bias and Complex Regional Pain Syndrome (CRPS).

Here's a link to the Emmy-nominated news segment:
http://www.myfoxla.com/dpp/health/co...drome_20091109

Special thanks goes to For Grace spokesperson, Cynthia Toussaint, for pitching, generating, consulting and interviewing for the segment. And congratulations to Fox News producer Heidi Cuda for her courage to bring the true pain experience to light.

I just received the email. What I heard in the video is RSD is not rare and infact millions have it. The figures I've read in the past was 200,000 to a million. I hope this is true because as time goes by RSD will receive more attention, finally.

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.

You've got a point. It seems, however, that maybe youth and early diagnoses and treatment may bring on the jumping jacks, perhaps?

My Lindsay had her first nerve block at 15, and she could not do jumping jacks after it... Her leg warmed up all the way to her foot, her color was normal but her pain was worse, she had muscle spasms. She was out of it. It took her several days to recover. So I am with the rest of you. She had three of these and each one was the same. So I don't think it has to do with the age and she was in stage 1, it was an early diagnosis. But, everyone is different. Hopefully, she is no longer in pain and is still doing jumping jacks, that's all I can hope for, especially for how young she is.
What great exposure!

:hug: Sandy

Hi,
 

I notice he didn't mention surgeries could bring on RSD.

i am thinking the dancer may just be in remission and she could be on meds that give her a feeling that she is doing better. The Methadone can do that. I can do more when I take it then when I'm not on it.

I wonder too if she worries about reinjury or injuries elsewhere. I try and watch what I do anymore but falling seems to be my knack.

We try to do things that we want to do and we sometimes end up worse for the wear.

I had a psych evaluation by a Psychologist for a PM Dr. and he still wouldn't see me again even after the Psych said I was ok to take meds.

Maybe they did catch hers soon enough that it is in remission and God willing will stay for her.

Ada

He more or less thought you a nut, then proceeded to insist you see a psychologist who said you were fine then added insult to injury by not seeing you? I'd post a complaint on this person or give'em an earful. :mad:

I don't mean to come off as though anyone seeing a psychologist is a nut, heck I'm ready to see one! :) I'm just curious as to how someone with RSD will handle pain any better with a psychological issue than those without. Perhaps it's to protect the doctor, I'm sure. But, then to ignore that person in pain who's psychological issues arose because of the neglect from the medical field over a long period of time is an abomination as far as I'm concerned.

Hi Jim,
 

I wondered about why he didn't see me again. I did call the Psychologist and he couldn't understand his reasoning for sending me to him and then refusing to see me again.

I wondered back then if I were in so much pain that the Drs. did think I was nuts. I was very suicdial from the pain. I hear that from others who are in such pain.

I got such shoddy treatment when I first started out with this due to how it was effecting me mentally. Had it not been for my PCP stepping up to the plate, I most likely would have ended it.

I still believe these Drs. know that they have to stick with us if they start giving us narcotics or long term treatments for the RSD so they don't want to start. It's a long road and most of them don't want to travel it.

I never had any good luck with PM Drs. nor Neurologist in dealing with the RSD. As far as a one treatment plan, I don't really think one treatment for RSD is the answer as some do.

My Dr. saw me weekly for 10 years and sometimes more if he felt he needed to. I can still get in on a call if I need to. He believed me and fought the fight with me.

You're right, the Psychological issues rose from the pain. Now that we have the pain somewhat under control I do better mentally. Had it not been for councelling to talk me through what I was going through I would not be here today.

Ada

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.

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

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.

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

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.

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

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! :D

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

:hug:Sandy

Enlightening..
 

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:grouphug:

I agree, made it look so simple to get pain relief, if only it was that easy....

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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