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Old 04-21-2011, 11:43 AM   #1
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RSD vs Conversion Disorder

Hi. I'm new to the group. I first of RSD in late July of last year and had it confirmed in August. I had the misfortune of falling down a flight of stairs at work and severly spraining my right ankle. Since that day, nothing has been the same. We all can relate. I have the great misfortune of having workers comp dictate my care. The nerve blocks have not been effective for me at all. My doctor has been advocating for a spinal inmplant since January. I had the nuero/ psychological evalution last week. She says I have conversion disorder. That because a good friend died the same time as my fall, this is a manifestation of my depession. There is no way I would keep myself from walking, taking care of my then 4 year old, over a dear friend who had cancer for months. Not to be cruel, but her death was not unexpected. I have a great family and support system. They were all here for me. Does anyone out there know how I can combat this diagnosis? Is there anything truly medical that can disprove here psychobabble? Thanks for any help. Just extremely frustated that workers comp will now have the perfect excuse to stop paying for treatment.

 
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Old 04-21-2011, 12:39 PM   #2
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Re: RSD vs Conversion Disorder

Oh bummer! I have traveled your same path...they said i had conversion disorder which delayed my treatment......Did you say a NEURO PHYSCOLOGIST? Run from HIMMMMMMMMM!

You have to understand the Neuro Shrinks try to corralate the a mental and physical aspect.........thats not RSD......RSD is a biological disorder that causes mental issues, not the other way around.....


Ok, here is an example of coversion disorder....you see your friend MURDERED or COMMIT SUICIDE....you are lost cuz of the trauma...so what happens? well you wake up BLIND!!!!!!!!!! another examaple...a little girl gets told 500 times a day to shut up..one day she says..no more and yells back and mommy dearest gets the hanger...well our baby girl........wakes up mute!

Ok, here the 411...the underground mental experience....My Grandmother was Mentally Ill..bad....Like oh no...i dont even wanna go there....so, in one of her many lucid times...we talk about my RSD and the treatment, cus this lady had shook treatments back in the day....she listens intently and I am 28 by this time and I tell her that they DX with conversion disorder and she says...."Mi Hita! Crazy does not know pain" So, find another doctor...I did and now Its 9 years later...My G'ma passed on and I am still in pain.......CONVERSION DISORDER?????!!!!!!!!!!!!!!! NO!!!!!!!!!!! I have two SCS's, been addicted, have been poked prodded, called a faker, a liar and because they didnt know what was up with me they said I was mental......


Question fo ya!

DO YU FEEL LIKE YOU DID THIS ON PURPOSE CUZ OF YOUR FRIEND? or DID YOU GET RSD FROM FALLING?

I PICK THE LATTER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Get a new doc....stay away from neuro shrinks......stick with a real shrink or go with an LISW...

Sad to say but most of self treat thru support here and reseach!

Peace,
K

 
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Old 04-21-2011, 12:45 PM   #3
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Re: RSD vs Conversion Disorder

Hey, one more thing..if they say you have a conversion disorder...you wont get your implant...tell your MD that you did not connect with her and that you request another Shrink....if you can..if cant, maybe someone else can give you some advice...


Too combat her DX? you must not include her records in yours....although now a days, you might not be able too, but you can certainly see another Dr. to override her DX with another stable DX thru a ligit Shrink....can you tell i am anti nuero shrinks? and neuro opthomoloists too...they act just like neurologist...just cuz you studied the brain does not mean you can treat me.....
Peace,
K

Last edited by free1day; 04-21-2011 at 12:48 PM.

 
Old 04-22-2011, 08:37 AM   #4
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Re: RSD vs Conversion Disorder

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Originally Posted by RSDfree1day View Post
Oh bummer! I have traveled your same path...they said i had conversion disorder which delayed my treatment......Did you say a NEURO PHYSCOLOGIST? Run from HIMMMMMMMMM!

You have to understand the Neuro Shrinks try to corralate the a mental and physical aspect.........thats not RSD......RSD is a biological disorder that causes mental issues, not the other way around.....


Ok, here is an example of coversion disorder....you see your friend MURDERED or COMMIT SUICIDE....you are lost cuz of the trauma...so what happens? well you wake up BLIND!!!!!!!!!! another examaple...a little girl gets told 500 times a day to shut up..one day she says..no more and yells back and mommy dearest gets the hanger...well our baby girl........wakes up mute!

Ok, here the 411...the underground mental experience....My Grandmother was Mentally Ill..bad....Like oh no...i dont even wanna go there....so, in one of her many lucid times...we talk about my RSD and the treatment, cus this lady had shook treatments back in the day....she listens intently and I am 28 by this time and I tell her that they DX with conversion disorder and she says...."Mi Hita! Crazy does not know pain" So, find another doctor...I did and now Its 9 years later...My G'ma passed on and I am still in pain.......CONVERSION DISORDER?????!!!!!!!!!!!!!!! NO!!!!!!!!!!! I have two SCS's, been addicted, have been poked prodded, called a faker, a liar and because they didnt know what was up with me they said I was mental......


Question fo ya!

DO YU FEEL LIKE YOU DID THIS ON PURPOSE CUZ OF YOUR FRIEND? or DID YOU GET RSD FROM FALLING?

I PICK THE LATTER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Get a new doc....stay away from neuro shrinks......stick with a real shrink or go with an LISW...

Sad to say but most of self treat thru support here and reseach!

Peace,
K

Thank you soooo much for your reply! I can not tell you how much it means to me. I was so frustrated yesterday and angry. I don't know if this is the point to hire an attorney to fight for a second opinion, or if I need to spend our own money on a second opinion, or where to go from here.
The nuero shrink asked two maybe three questions about my friends deaths and that was it (one died Jan 09 and one late July when I fell). She said she did about three workers comp clients a week, but part of her testing was computer based on a computer set up behind the receptionist area. I had to use my crutches to get past the receptionist chair and into the testing chair. It was "an obstical course" that she had "never realized until today". Really? She's never tested others in wheelchairs or on chrutches???
Two sets of complete the pattern testing and the MMP test. One sheet of circle the words that describe your pain, and one set of 30 questions that were open ended "my future is ________".
To be fair there is no way this is conversion disorder. I have experienced too much loss and death in my life. I deal with it in unusual ways. I make plans and arrangements so that others don't have to. I started that when I was 20 and two friends from high school died ( graduated in a class of less than 30). As a result, my family is very open about what we want and our thoughts and feelings. My friends who did pass, it was me that they wanted to go with them to make their arrangements. Both died of cancer and they knew when their time was coming. I am comfortable with talking about death, planning for death, and am very proactive in making preparations. I DO NOT all of a sudden stop having one of my limbs not work.

I fell down a flight of stairs. I sprained my ankle for the first time ever. The bruises didn't go away. The swelling is still there. Then one night my foot went into labor. It was the worst pain ever. I couldn't tolerate a sheet on me. I couldn't have a paper towl touch me. I can't stand the freezer section of a store or the heat from the sun. And I've improved. I fight for PT sessions. I've been as proactive as possible. I've got two kids. I just want my life back.

 
Old 04-22-2011, 10:09 AM   #5
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Re: RSD vs Conversion Disorder

UGH! PT...becareful...they should not hurt you...this is not PT to rehab you to go run a 10k...this is so you can brush your teeth and comb your hair while in pain...only gentle PT.....girl! I go to old folks exercise classes...i am the youngest one in there and the slowest ha ha ha..how ironic...i had an old man tell me....you sure are pretty but a lil slow for me and he moved to the front..What you talkin bout boy! i was running circles around your granson at 28...you old punk! at least when he is forgetting to go to classsss....i will be laughing...muuuahhhhahhhahhhahhahh!
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Im always being chased by a dragon (RSD) and can't seem to stop chasing dragons(OH)....

 
Old 04-22-2011, 11:48 AM   #6
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Re: RSD vs Conversion Disorder

I lucked out and the PT has a theraputic swimming pool. It enables me to acutally "walk" without putting all but 15% of my weight on my foot. Once, when WC held up my PT for approx 3 week I lost soo much muscle mass. Now, after months of consist going and working with the same therapist, I have only 2 inches of difference. My PT therapist had prior experience w/ RSD. We have fought our rounds "must progress so WC will OK more sessions" vs "it hurts too much to progress". But we have a great understanding. She would never say that I'm not giving it my all every day that I'm in there. BC of the pool, I've been able to move my foot and progress increments , but it PROGRESS. It's hope. It's beyond painful. It's tears while past medicated and it's me telling them to do WHAT? after I take a hammer to their foot then I'll do that. But I don't know what I would do if it wasn't for their pool. It's the only way I've been able to walk at all. I truly believe that's what has kept my RSD from spreading or my muscles from atrophing worse than they did.

 
Old 04-23-2011, 03:46 PM   #7
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Re: RSD vs Conversion Disorder

I had a bit of a fight to clear up my son's record when they started using the 'psychological' excuse to weasal out of getting it wrong. First, I was careful when 'they' used what a layman would consider part of normal conversation but was in fact a medical term - so if anyone used the word 'depressed', I'd turn it round and said he was not depressed, and was in fact showing a lot of resilience coping with the situation. I also wrote an e-mail to the psych person we got referred to stating very strongly that I was really concerned there was further danger of physical deterioration, giving my reasons - he was actually very good, and if there had been an emotional cause, would have been good - he moved the referral sideways, to someone who dealt with the physical side. I've actually found e-mails very useful in getting things on record that can just be forwarded onto the next person, wheras spoken information just seems to get lost. Also, in two different circumstances, when I was trying to erase the 'emotional cause ' allegations, I talked to the secretaries, explaining my views quite strongly, pointing out that all I wanted was for what was essentially a lie to be removed from records, on the first occasion and on the second occasion, the utter ridiculousness of what the outcome of a certain action of theirs would be. Both interventions worked. I hope this helps.

My son has now increased the bend in his knee from c. 30 degrees to 40. He will get there.

 
Old 04-25-2011, 08:37 AM   #8
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Re: RSD vs Conversion Disorder

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I had a bit of a fight to clear up my son's record when they started using the 'psychological' excuse to weasal out of getting it wrong. First, I was careful when 'they' used what a layman would consider part of normal conversation but was in fact a medical term - so if anyone used the word 'depressed', I'd turn it round and said he was not depressed, and was in fact showing a lot of resilience coping with the situation. I also wrote an e-mail to the psych person we got referred to stating very strongly that I was really concerned there was further danger of physical deterioration, giving my reasons - he was actually very good, and if there had been an emotional cause, would have been good - he moved the referral sideways, to someone who dealt with the physical side. I've actually found e-mails very useful in getting things on record that can just be forwarded onto the next person, wheras spoken information just seems to get lost. Also, in two different circumstances, when I was trying to erase the 'emotional cause ' allegations, I talked to the secretaries, explaining my views quite strongly, pointing out that all I wanted was for what was essentially a lie to be removed from records, on the first occasion and on the second occasion, the utter ridiculousness of what the outcome of a certain action of theirs would be. Both interventions worked. I hope this helps.

My son has now increased the bend in his knee from c. 30 degrees to 40. He will get there.
I would hope that it would be that simple. If it were just a case of me and my medical charts it would be soo much easier. Unfortuanetly, I have found that workers comp has removed all control of my own medical care from my hands. Or at least what feels like 90% of that control. I have never seen nor spoken to a secretary in this office, just the PhD who wrote the evaluation. The very startling and contrasting point that I found disturbing (beside that she came up with riduculous diagonsis) was that she stated that she did approx 3 worker comp evals a week, yet part of my "testing" was a memory section on the computer where I had to use my crutches to get ambulate behind the receptionist area/ chair to a corner area to another chair and computer set up. Her words were that this was an "obstical course" and that she had never realized this "until today". Really? She exams that many people w/ injuries and none have come in with physical limitations making it difficult to walk back there? Really? And she never once asked me who has not walked since July (with two children at home youngest turned 5 in Jan) what support systems are in place, when my depression felt like it was the worse (b/c obviously I do have depression issues), or when my friends died what coping skills I used or what coping skills I used to try to deal with this life altering diagnosis. Most importantly, to me, she did not ask me what I wanted for my future!!! We have a future. That's what some of these "doctors" forget. We can and often are making progress. We are the ones fighting it out at PT and at home or at the doctors offices (or like me w/ workers comp) to be able to return to our previous lives. We know we are capable of more. We can do this. Give us time. Believe in us. Give us the tools and support and we will get there. I'll take every single degree of recovery I can get. It's better than where I started.

Is your son in hydro therapy? I know that has worked best for my foot. My rotation of movement is still very limited and weight bearing is a nightmare. But like I said, compared to where I was months ago.... I couldn't do without the theraputic pool and my PT gal. I was lucky enough that she had worked w/ RSD before.

Thanks for the advice. I'll be sure to use email if nothing else as another sorce of documentation.

 
Old 05-22-2011, 12:35 AM   #9
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Re: RSD vs Conversion Disorder

Hi deltagrits. I hope things are going better for you. For the depression, are you getting any chances to get out in the snlught, and if not, take vit D supplements - theres some research linking this, but no one seems to point out that peole in pain can't get outside and that might be causing lowered vit D and depression. Thanks for the advice about he hydro pool. We've tried it once and the warmth certainly helps but unfortunately, to access it we have to contend with precenting the physios attempts to push my son into the pain RSD area. I think we've got my son better after 1 1/2 years by doing our own thing and I'll post the info bit by bit on a seperate thread in case it helps

 
Old 05-23-2011, 04:23 AM   #10
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Smile Re: RSD vs Conversion Disorder

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Hi deltagrits. I hope things are going better for you. For the depression, are you getting any chances to get out in the snlught, and if not, take vit D supplements - theres some research linking this, but no one seems to point out that peole in pain can't get outside and that might be causing lowered vit D and depression. Thanks for the advice about he hydro pool. We've tried it once and the warmth certainly helps but unfortunately, to access it we have to contend with precenting the physios attempts to push my son into the pain RSD area. I think we've got my son better after 1 1/2 years by doing our own thing and I'll post the info bit by bit on a seperate thread in case it helps
I am defiantly one of those people who need sunshine in their life. My grandmother oddly enough also gets seasonly depressed. I was so excited when it turned spring. My 5 year old & I went out. She played and I did as much "dirt therapy" as I could in the back yard. That lasted approx 30 minutes. I had a sock on as I remembered from last summer that either the meds or the RSD that my foot and direct sunlight don't mix. All at once it felt as if my foot was as swollen as it could be. It wasn't, just the sensation was there. Here in the midsouth, we've had a ton of crazy weather the past several weeks, so I haven't ventured too much outside. But I'm hoping it's like any other stimuli, a little at a time and I'll be able to increase it.After all, a snail's pace is still a pace! I want to be able to adjust to more peaceful sunshine before the heat index gets too prohibitive. Especially w/ the meds.

I have had a bit of a nod in the right direction. The nuerologist made it clear that he disagreed w/ the conversion disorder diagonisis as well. And I have already completed my second opinion appointment. YEAH!! So, now we just wait and see what the results are and if workers comp will accept them. Some days are better than others. It's such a roller coaster ride of a disorder. Last week I couldn't walk 15 seconds on the treadmill on Wed. On Friday it was 10 x better. Who knows what today will hold.

Your son is so very blessed to have your patience and guidance in all of this. I could not imagine having to struggle with this disorder at such a young age. I hope that you too are getting the support you need.

 
Old 05-23-2011, 07:53 PM   #11
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Re: RSD vs Conversion Disorder

Deltagrits.. hey caught this thread a little behind.. if you dnt have a comp atty you should get one espec. with this dx.. comp will run circles around you otherwise. I too am a comp rsder and i have attys and they still try to loop me around.. but i also am trained to deal with comp as well. also i will tell you this from what ive experienced a surgeon will say surgery . oncologist will lean towards cancer as dx, so yes a shrink will say its mental..let them walk a mile it your shoes. paint the picture of your pain so they may see it clearly if still you have issues you legally are allowed a second opinion, even a third and fourth etc.good luck

 
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Old 05-24-2011, 08:47 AM   #12
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Re: RSD vs Conversion Disorder

Thanks. I did speak to an attorney and she didn't seem worried about the dx at all. Like it was no big deal. I'm freaking out b/c in TN you have 364 days from date of injury to file suit. My biggest concern is that on day 380 they will use that dx to stop treatment. My husband wants to see a different attorney. My boss was a good man. I don't want to file a suit just for the fun of it, but at the same time, this "conversion disorder" scares me into thinking that work comp may have an "out" into further treatment down the line. We've already paid for a 2nd opinion out of pocket, but that doesn't mean work comp will accept it. I think an attorney can push them harder than just us. I don't know. I'm also a little scared of the stimulator. I'm scared of the unknown. I'm scared of living like this though. What other options are there? I didn't ask for any of this and sometimes work comp treats me like I'm just sitting at home on a sweet little vacation. My daughter was 4 when I fell. My family has been turned upside down. Nothing will be the same. My family had plans. My husband and I had plans to try for another child that summer. Oh well. Different goals now. Walking would be nice. Not taking 10 pills a day would be nice. You know the drill. Thanks for the reinforcement. I do appreciate it.

 
Old 05-24-2011, 10:53 AM   #13
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Re: RSD vs Conversion Disorder

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Originally Posted by deltagrits View Post
Hi. I'm new to the group. I first of RSD in late July of last year and had it confirmed in August. I had the misfortune of falling down a flight of stairs at work and severly spraining my right ankle. Since that day, nothing has been the same. We all can relate. I have the great misfortune of having workers comp dictate my care. The nerve blocks have not been effective for me at all. My doctor has been advocating for a spinal inmplant since January. I had the nuero/ psychological evalution last week. She says I have conversion disorder. That because a good friend died the same time as my fall, this is a manifestation of my depession. There is no way I would keep myself from walking, taking care of my then 4 year old, over a dear friend who had cancer for months. Not to be cruel, but her death was not unexpected. I have a great family and support system. They were all here for me. Does anyone out there know how I can combat this diagnosis? Is there anything truly medical that can disprove here psychobabble? Thanks for any help. Just extremely frustated that workers comp will now have the perfect excuse to stop paying for treatment.
Hi, My name is Diane ,I know what you are talking about i fell at work 9 mts ago and now have rsd and on top of the i also have a venous malformation all in my lt foot and leg !!! it has turned my life upside down !! i fell so bad for my husband who has to almost everything !! i was a very active person loved to have so much fun and now all i do is cry with so much pain i have been thought the nerve blocks and it has not helped and like you workmans comp dont want to hear about it

 
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Old 05-24-2011, 06:56 PM   #14
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Re: RSD vs Conversion Disorder

I actually just got my 2nd opinion results today. Of course my husband I paid for them out of pocket. He agrees w/ the 5 MD doctors before him (that WC paid for BTY) that it is RSD. He completely disagrees w/ the conversion disorder bs/ dx. The difference between the two was night and day. The 1st one had me tons of crazy test, but only asked me like 5 questions. The 2nd one did a 45 min interview w/ me. And actually witnessed what my foot does. Now we'll just have to see what work comp says. We'll see.

 
Old 05-25-2011, 09:22 AM   #15
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Re: RSD vs Conversion Disorder

you paid for scnd opinion??? i suggest you bill comp asap for compensation on it ..you will need c4 forms from dr....dr which said conversion..was it an insurance medical examiner..or just part of you regular dr,s if ime no issue at all cause they always say nothing is wrong with you if it is a dr from your list then prob still no issue brcause of all the drs you have saying RSD.. i suggest you worry most about the present and less on future just to keep your sanity..trust me I know what its like to worry about whats coming and it ddnt help... one day at a time is our best approach. and you fight the battles as they come.. under comp you will have your fair share.. the real question is do you trust your drs to stand by you , treatment and diagnosis if so then you really dont have much to worry about . My neurologist is handeling comp very effectively.. almost all denials he has gotten over turned. I know he is on my side.. my atty will only act on their pocket and when i motivate them..i have to educate them even though they say they are aware of the dx. yeah well im aware of alot of things doesnt mean im educated in them...FIve oyur atty as much info on RSD as possible and if you can try researching past comp RSD cases taken to court and their out comes that might help your atty to.as long as you trust your atty as well. Remeber you are the one who knows how you feel ..no-one else can tell you that. you know your body and if something is wrong .
plus document everything... good luck and be well

 
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