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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 07-21-2005, 08:33 PM   #1
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Quick Question,any help greatly appreciated!

Hey guys,

I had a few questions about some things I am experencing. I am having severe pain in my neck and right shoulder going down into my right hand, my entire arm has a weak feeling (that's the only way to describe it) also my arm and hand are having slight spasms, the same symptoms are occuring in my right leg, from my hip to my foot, also I have a burning feeling in my lower part of my leg into my foot, not constant on and off and it last for awhile then dies down. I was a pedestrian when I was hit by a car, the main impact was on my right hip and leg, I was then thrown sideways into another car, hitting my right shoulder and arm off another car and being pinned in between both cars as the driver continued to crush me in between both cars without stopping.

I told my doctors for months about my pain and no one listen, I mean really listened I was sent to a psychiatrist for post-tramatic stress related to a MVA!! What a joke, to tell someone that they are not really in pain, by the time someone actually believed me it was to late the permanant damage was done. Since I was just diagnosed a few weeks ago, I am unsure of these symptoms, I have not experienced some of them before. Some advice and input would be great. Thanks to all!! I am so glad I found this board, I don't feel so isolated and misunderstood anymore, because you know exactly what I am going through.

I will post soon.
LISA

 
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Old 07-21-2005, 10:33 PM   #2
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Re: Quick Question,any help greatly appreciated!

Hi Lisa,
Wow! You really got banged up! I'm sure the accident was emotionally traumatic, but I believe that RSD pain can be even more so - especially when people don't believe you.

It is so hard to know what is RSD and what is other problems. I've been diagnosed for almost 2 years and I still can't sort it out at times.

Do you specifically have a pain management doctor? Having one who believes you is critical to getting better. I was fortunate that the first doctor I saw believed me and treated me with compassion. So they're out there - you might have to try another one to find that doctor.

Have you had any blocks? These can be used to diagnose as well as help with the pain, and the sooner, the better.

Best wishes,
Julie

 
Old 08-03-2005, 11:47 PM   #3
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Red face Re: Quick Question,any help greatly appreciated!

:confused quick questionpost reply hi lisa, so happy to hear that you even survived an accident like that,but very sad to hear that you are knowhaving to deal with rsd. i am new to this site and am also a newbie to rsd. this is the most confussing and painful disease to have to deal with. when i first went to my family dr of 25 yrs.i know he thought it was all in my head , because mine developed from two needle injections in my left arm . this happened to me on dec 5 2004 i missed christmas with my family because the pain had gotten so bad i could not stand to be around anybodyi have shoulder,arm, hand . the first rule in dealing with rsd is to get yourself the best dr. you can find . most importantly a neroligist and a dr. that deals with pain management.in jan 2005 i ended up in my family dr's office screaming & crying with the pain that is when he finally knew that there was something really wrong . it took another 2 months to see the neruoligist i was tested and diagnosed with rsd and fozen shoulder which is why i could not stand my clothes on my body, and could not even dress myself. for rsd patients early diagnosis is very important especially in the first 3 months after injury for best treatment results i hope you are still within the 3 months after your accident . i did not start my treatments until i had reached my 6 month.but know i have twoo wonderful dr's treating me . there are four stages for rsd most patients do not get to the fourth stage if you are on meds and you do have problems with them do not be afraid to tell your dr because they are real and not in your head.also do not be afraid to ask any questions that you need to these also are very important for our treatment i have been isolated and alone with this monster disease and fully understand what you are going through .also it is important for us to keep notes because of the memory problems it comes with the package you are not going nuts lol i have been trying to find someone to talk to about rsd for months and i found you on this site . i am so glad i found this site and became a member ther are so much more info that i could give you being a new member i am wondering if we could stay in touch by email?good luck lisa you will be in my thoughts peace and freedom from pain

 
Old 08-04-2005, 10:30 AM   #4
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Re: Quick Question,any help greatly appreciated!

Hey chick58,
Unfortunately we are not allowed to post our personal e-mail addresses on the message board due to privacy issues, but we can keep in contact through the message board since I am on the website quite frequently. It is so great to hear from a fellow newbie, RSD is so confusing and such a lonely disease, I went to my neuro doc yesterday and they said they are uncomfortable treating me for rsd since they don't know alot about it,so they are sending me two hours away to a doctor that specializes in RSD. I also went to my PCP yesterday also and she said the best way to keep informed about treatments,sypmtoms and so on is to keep in touch with people who also suffer from RSD, since it is so unknown. Just like you I am glad to have found this website because if I don't understand something or I need someone to talk to there is always a friend who knows just what you are going through. Please keep in touch with me, I will be looking for another post from you . I will write one soon with alittle more info about me but I have a inpatient 2 yr old who wants me.


Here is to a pain free day for us all. post soon!!

LISA

 
Old 08-09-2005, 06:42 PM   #5
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Thumbs up Re: Quick Question,any help greatly appreciated!

rsd hi lisa, sorry ihaven't replied sooner ,i have had a few falls which really messed me up . how the heck are you managing this disease with 4 children??? my children are all adults now ,and i have three grandchildren.i can;t imagine trying to deal with a 2yr old and having rsd to deal with at the same time.i'm surprised that you have the time to even get to the computer loli raise 4 children on my own as their father passed away in 1978of cancer . i have so many days now that i whished he was hereto help me through this .but then again i have found people like you and this wonderful group tohelp me through twothumbs up toeveryone .ihad a block yesterday and i am having another tomorrow ,in a lot of pain right now so i guess i will say bye for now good luck to you lisa and peace and freedom from pain sandy chick58

 
Old 08-09-2005, 08:06 PM   #6
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Re: Quick Question,any help greatly appreciated!

Hi Sandy,
I'm so sorry to hear about all that is going on right now, hopefully the blocks will bring some relief. I couldn't imagine raising my kids alone, you are a very strong women and if you can raise kids by yourself you can do anything that includes getting through all this junk we deal with everyday. I am so glad to have found this board and wonderful people like you and many others since I am so new to RSD, I look to people on the board for advice and a shoulder to lean on or to just chat. I think because I was diagnosed so early I don't have some of the problems or pain that makes you on the verge of being bedridden, don't get me wrong I have severe pain that would practically bring me to my knees, but I am home with the kiddos and someone always needs something so I try and mentally block out the pain, also I am hoping that because they caught it within the first 6months of getting it I will not have it spread or go through other horrible symptoms others have talked about. As for getting on the computer I try and do it after everyone goes to bed and this is the only way for me to get any info or advice on RSD since alot of the doctors around here don't fully understand it, so I have to go 2 hrs away to a specialist to find out what the next step is, I am so glad you wrote back because you were on my mind, I will keep good thoughts for your next block that you will get the relief you deserve. Have to go for now my oldest is turning 11 tomarrow and I promised him I would make him cupcakes, my husband travels for work so he's gone for 2wks so I'm holding down the fort myself and our son is upset dad is going to miss his B-day, I'll write soon. Keep me informed about your block.

LISA

 
Old 08-18-2005, 05:41 AM   #7
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Re: Quick Question,any help greatly appreciated!

Quote:
Originally Posted by redhd4
Hey guys,

I had a few questions about some things I am experencing. I am having severe pain in my neck and right shoulder going down into my right hand, my entire arm has a weak feeling (that's the only way to describe it) also my arm and hand are having slight spasms, the same symptoms are occuring in my right leg, from my hip to my foot, also I have a burning feeling in my lower part of my leg into my foot, not constant on and off and it last for awhile then dies down. I was a pedestrian when I was hit by a car, the main impact was on my right hip and leg, I was then thrown sideways into another car, hitting my right shoulder and arm off another car and being pinned in between both cars as the driver continued to crush me in between both cars without stopping.

I told my doctors for months about my pain and no one listen, I mean really listened I was sent to a psychiatrist for post-tramatic stress related to a MVA!! What a joke, to tell someone that they are not really in pain, by the time someone actually believed me it was to late the permanant damage was done. Since I was just diagnosed a few weeks ago, I am unsure of these symptoms, I have not experienced some of them before. Some advice and input would be great. Thanks to all!! I am so glad I found this board, I don't feel so isolated and misunderstood anymore, because you know exactly what I am going through.

I will post soon.
LISA

 
Old 08-18-2005, 05:53 AM   #8
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Re: Quick Question,any help greatly appreciated!

Lisa,
First off Praise God you are alive! You might want to ask you doctor about doing a electromylogram and /or nerve conduction test on your brachial (sp?)plexsis nerve. That nerve sits right where are having the bulk of your pain. I have had the tests done, they are pretty simple, it may be a good place to start, when talking with you Doctor.
If you don't mind me asking, where do you live? I live in Arizona and it has been very hard to find a Doctor that knew much about RSD. I did find a pain mangagement doctor that does only that...pain managment, so IO do have some help.
My best advice to you is keep pluggin' away, and be very pro-active in your care, it's amazing how much stress is relieved when you understand what's going on in your body. When it comes to your health the unknown can be very scary. I know that there are many RSD support groups around, maybe you could find one in your area.
Take care,
Kim

 
Old 08-22-2005, 09:12 PM   #9
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Re: Quick Question,any help greatly appreciated!

Hi Kim,
Thanks for your kind words and advice, sorry haven't posted sooner I have been sick, still am but hoping to be feeling better soon, Hope you are doing well also. I live in Pennsylvania in a smaller town and the doctors are not very informative and don't really understand RSD, so i went over my neurologist head and contacted a pain managment center and hope to schedule an appt. soon. I will keep you updated and you do the same.
I'll post again soon.

LISA

 
Old 08-28-2005, 05:38 AM   #10
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Exclamation Re: Quick Question,any help greatly appreciated!

hi lisa it has been awhile since we have connected, but you have been on my mind alot. i think i told you i have been having problems with falls ,well last wk. i had another one and i can't remember anything about what happened to me .i had gone into my kitchen ,also do not know what time ,but when i came around it was 3.30 am .have no recolection as to how long i was laying on the kitchen floor. when i did come around i just layed there on the floor for awhile and not thinking i reached up to my refrigerater with my bad arm to pull myself up and caused myself 3-4 days of hell with the pain.i just wish they could tell me why iam having so many falls latelyis it or could it have something to do with the rsd i don't know and my dr does not even seemto be too concerned.another thing that i am really worried about is that my dr that gives me my block is talking about surgery.my last two blocks were a nightmare because my vocal cords were frozen couldn't talk,and i took a sip of ice tea and almost choaked because i couldn't swallow scary huh u bet .well there are many other things that iwill tell u later ,getting tired letme know how you& your family are doing bye for now sandy

 
Old 08-28-2005, 08:24 AM   #11
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Re: Quick Question,any help greatly appreciated!

Lisa, have you actually had an MRI done of your entire spine?or even the C spine area?what you are describing sounds alot like the symptoms i have had due to spinal cord damage from a surgery done on my c spine,inside the actual cord.You could have very well sustained alot of different types of damge during your nasty accident.If you have already had one done,get a copy of it and see just exactly what was found.I have learned from experience that docs do not tell you everything.if you only had a CT at the time of the accident that is not good enough as it only shows mostly boney structure and not deep tissue like with an MRI.The standard when you are brought into any ED after a traumatic accident is to do a CT as they do not know if you have any sort of metal inside your body(pre existing or from the actual accident)so they do only CT just to be safe.Let me know what you have had done and we can go from there.marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 08-29-2005, 08:47 PM   #12
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Re: Quick Question,any help greatly appreciated!

Hi Sandy,

I am sorry you are having all these horrible problems that RSD seems to inflict, How are you doing after your most recent fall? I know from my own experience that balance can be an issue with RSD, I sometimes feel as though I am walking on a slant and can't straighten up. Do you have a good neuro Doctor? Every time I see mine she does a complete exam and part of it includes checking my balance,and if there is a problem and she doesn't have an answer she'll send me to someone who does. I finally got a appt. with a PMD on Sept. 2, and I am still waiting for an appt. with this RSD specialist( like living in daily pain you would want to wait a millenium to see a doctor) anyways if you don't feel like you are being heard or the doctor isn't really listening to you, get another one. It took me 5 tries to find one who actually heard me out and from my symptoms told me I had RSD , this was one of the most horrible days of my life and one of the best because I knew what I had and I wasn't nuts. You have been on my mind also and I am glad we can get comfort from one another, on those good days and especially on the bad. My family is doing great my son turned 11 on 8-10 and my daughter turned 10 on 8-22, How time flies I remember just having them and wondering can I handle this???? Eleven years later the answer is YES and alot more. Hope this post finds you in good health, keep me posted on what the doctor says.

Marcia,
Just wanted to post to you also and thank you for all the good advice, I did have a MRI of the cervical spine on numerous occassions and all was good. I was just recently diagnosed with RSD and bilateral carpal tunnel syndrome with my right side as usual being affected worse to the point of needing surgery, I will have to talk with my PMD about surgery cause I am worried about it spreading. I am still trying to get over a sinus infection that made my symptoms 10x worse, My first appt with my PMD is in a few days hopefully he can shed some light into this nasty disease and I can get some kind of grip on it already. I am only 31 with four kids, I have so many things I want to do for my kids, with them, things I want to do myself, and RSD is the monkey wrench holding it up. But I have faith that GOD will pull me through, This will not beat me. With my faith and strong will hopefully this will help me succeed. I will talk to you guys later!!!
I'll let you know about my appt. Till then Keep Smilen and here's to a pain free hour or even better a pain free day.

LISA

 
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