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Old 02-24-2011, 01:56 PM   #1
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rsd spread fast... normal or not?

hey all.. im having a baaaaaad day my rsd seems to have expoded on me..now both legs are swelling like a balloon. temp is changing really fast i go from burning to ice blocks in what seems like seconds flat.. skin sesitivity increased toes purple and standing **@#$$#@$#@. im scared that it did this... i ddnt know it could be ths fast is ths normal?? im not a crier but since last night my eyes havent been dry..the best my drs can do is move up pain block..I still have physical therapy to deal with tonight..Im sure thats going to be $%$#!%$%! great. I feel lost confused scared and the pain is worse than unbearable. life stability just flew out the window. has any one else had this happen cause my drs havent seen ths happen before///
hekp need info just to ease my mind if nothing else

 
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Old 02-24-2011, 02:09 PM   #2
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Re: rsd spread fast..normal or not

yes.....sad but true......it travels fast at times....if pain cycle is not stopped thru blocks....it goes mach 10......if pain is under control or stable.....it like moves slow......9 yrs ago it started in face with bad headaches.....now......I have total body rsd........think I broke toe...very purple but rsd hurts worse....

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Old 02-24-2011, 02:22 PM   #3
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Re: rsd spread fast..normal or not

this is like worse on worse on worse this has gotta stop i need my legs!!!!!!

 
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Old 02-24-2011, 02:27 PM   #4
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Re: rsd spread fast..normal or not

I lost the use of right leg after 6 months and 6 blocks and epidural s..........my left leg is bum and drags drags and need cane for right leg....sometimes I fake an accident if I go to mall...people state at me cuz I'm still young...I think..or maybe they are saying..look at that hag

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Old 02-24-2011, 02:33 PM   #5
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Re: rsd spread fast..normal or not

How long have you had rsd? Not when the doc said you have it.....how long ago did pain start?
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Old 02-24-2011, 06:46 PM   #6
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Re: rsd spread fast..normal or not

this has been 2 years since injury.. and pain and symptoms have been constant..

 
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Old 02-25-2011, 01:27 AM   #7
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Re: rsd spread fast..normal or not

I want to be positive and encourageing but I wont ever sucker punch you....I will always be honest thru my experiences...i am not a doctor nor an expert...Im educated and informed and have been in RSDVILLE for 9 years....so only my truth okay? when I say the word "BUT" it really means but...which means to ignore everything said prior....may not say "but" next time?


At 2 yrs I was going out of my mind.....doing everyhting they said...if they said stand on your head and count to 9 and do a beer bong...I did it.......I tried all the natural stuff first...be one with self...even walked to this holy church that people get dirt from...wierd god thing..holy water...you are healed...BS! I even practiced religion secretly..trying to find answers...

You know my biggest Issue? is that I was not flipping bugers at Wendys....I was running a Construction Crew of 12 Men and I had just passed my Building Lic Exam...Aced that Sucker! I was out in the field picking up 10 foot 75 lb steel forms and throwing them in tralier like my guys..I had some guns on me...LOL....

Slowly.....my sight went, then hearing, then then then then then then then then......

9 yrs now, and im 38...old in pain and losing my sight losing my mind..please soemone tell me im fine (thats from a song..i think metellica)

I am having bad issues losing my use of legs and arms and hands...no amount of PT helps RSD...it makes it worse...STAY AWY FROM ICE...NO ICE....BAD BAD...NO ICE...get it? NO ICE.....heat only! Stay away from Chriropractors and talk to someone about losing your use of limbs cuz I didnt and I cant deal with it.....dont give into the "you are crazy or malingering BS! "....My Grandma had bad mental issue even had shock treatments..poor thing....she told me 5 yrs ago....."Mi Hita...Crazy does not feel pain....you are not crazy..I am" and she passed away shortly after that.....wise woman..I know she died feeling like a burden because my dad and aunts and uncles treated her that way....but she made a big difference in my life...I miss her! all 7 of her.....

look i m not sugar coating it for you or anyone else...RSD SUCKS......I M SERIOUS WHEN I SAY THAT...I AM NOT USING METHAPHORS........it takes everything good about you and makes it into nothing! nothing! nothing!

Will you be the lucky ones to make it thru the blocks, opiates, and all the other stuff? I have been where you are going and it is not pretty nor enjoyable..you will stress and freak out... the treatment gets more scarier and barberic as time goes on.....The Blocks are nothing...shoot I'd do a block alll day longggggggg, but the SCS scares the tar out of me....and Im going in on monday for Perm. SCS...see? desperation...want me to eat cow cude? okay RX it.......you see sweetie...I am at the end of my rope...next is Ketamine and I did research on calmare..Ha! Ha! thats baby stuff....its like giving me tylenol for hair loss? what? naaa! not for me....thanks for lead! cuz anything is worth looking at....

One thing I have learned....they dont treat RSD...they MANAGE PAIN and SYMPTOMS of RSD...get that in your head...no cure, no pill, just a life of pure pain.........and pray to god your doc knows his stuff....I am not trying to scare you, but RSD IS SCARY and Neuros heads are so big and theirs members small...they wont help and we need a person that knows about brains not putting me to sleep for surgury..no offense dr. N...you are my Angel!

RSD is a maze of bad VOO DOO...will you make it to the end of maze alive? or will you perish some where in middle or right at end just 5 feet awwwway from exit? im the five footer! A Prime Contractor use to tell me "Cant blame you for trying" did you know that for every 12 Jobs I bid..... I got One?....oh! my Main job was an Estimator...was gonna be a Civil Engineer or Architect, but a Hot One! got thrown out in field when Superintendant got hooked on Crank....I rocked better than he did sober.....then RSD Hit me at 29....

If I didnt have past good memories...I wouldnt have nay good memories at all......RSD takes everything GOOD about you away...so hold on cuz you are headed for a roguh ride and ifyou are married with kids.....tell your wife its tough...I am ready to lose my Husband of 13 years...and everyday gets worse..not better...and this aint my first Rodeo...

I Hope I am full of crap and you make it thru this...I hope you get that one more block and its over...but my truth tells me i just sucker punched you.....I think I told you this but I was posting under Budko when RSD first started....I read a few posts and got depressed so i have no idea what was said....

Painman...hang in there and I am here for you...I may not always be flowers and candy but I know when you need a hug....or a pick me up! The only way to get thru is is Maning up....one day at a time and hope when you wake up, it was all a bad dream and you will feel great....

Always,
Kim
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Old 02-25-2011, 10:20 AM   #8
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Re: rsd spread fast..normal or not

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Originally Posted by Homie2011 View Post
I want to be positive and encourageing but I wont ever sucker punch you....I will always be honest thru my experiences...i am not a doctor nor an expert...Im educated and informed and have been in RSDVILLE for 9 years....so only my truth okay? when I say the word "BUT" it really means but...which means to ignore everything said prior....may not say "but" next time?


At 2 yrs I was going out of my mind.....doing everyhting they said...if they said stand on your head and count to 9 and do a beer bong...I did it.......I tried all the natural stuff first...be one with self...even walked to this holy church that people get dirt from...wierd god thing..holy water...you are healed...BS! I even practiced religion secretly..trying to find answers...

You know my biggest Issue? is that I was not flipping bugers at Wendys....I was running a Construction Crew of 12 Men and I had just passed my Building Lic Exam...Aced that Sucker! I was out in the field picking up 10 foot 75 lb steel forms and throwing them in tralier like my guys..I had some guns on me...LOL....

Slowly.....my sight went, then hearing, then then then then then then then then......

9 yrs now, and im 38...old in pain and losing my sight losing my mind..please soemone tell me im fine (thats from a song..i think metellica)

I am having bad issues losing my use of legs and arms and hands...no amount of PT helps RSD...it makes it worse...STAY AWY FROM ICE...NO ICE....BAD BAD...NO ICE...get it? NO ICE.....heat only! Stay away from Chriropractors and talk to someone about losing your use of limbs cuz I didnt and I cant deal with it.....dont give into the "you are crazy or malingering BS! "....My Grandma had bad mental issue even had shock treatments..poor thing....she told me 5 yrs ago....."Mi Hita...Crazy does not feel pain....you are not crazy..I am" and she passed away shortly after that.....wise woman..I know she died feeling like a burden because my dad and aunts and uncles treated her that way....but she made a big difference in my life...I miss her! all 7 of her.....

look i m not sugar coating it for you or anyone else...RSD SUCKS......I M SERIOUS WHEN I SAY THAT...I AM NOT USING METHAPHORS........it takes everything good about you and makes it into nothing! nothing! nothing!

Will you be the lucky ones to make it thru the blocks, opiates, and all the other stuff? I have been where you are going and it is not pretty nor enjoyable..you will stress and freak out... the treatment gets more scarier and barberic as time goes on.....The Blocks are nothing...shoot I'd do a block alll day longggggggg, but the SCS scares the tar out of me....and Im going in on monday for Perm. SCS...see? desperation...want me to eat cow cude? okay RX it.......you see sweetie...I am at the end of my rope...next is Ketamine and I did research on calmare..Ha! Ha! thats baby stuff....its like giving me tylenol for hair loss? what? naaa! not for me....thanks for lead! cuz anything is worth looking at....

One thing I have learned....they dont treat RSD...they MANAGE PAIN and SYMPTOMS of RSD...get that in your head...no cure, no pill, just a life of pure pain.........and pray to god your doc knows his stuff....I am not trying to scare you, but RSD IS SCARY and Neuros heads are so big and theirs members small...they wont help and we need a person that knows about brains not putting me to sleep for surgury..no offense dr. N...you are my Angel!

RSD is a maze of bad VOO DOO...will you make it to the end of maze alive? or will you perish some where in middle or right at end just 5 feet awwwway from exit? im the five footer! A Prime Contractor use to tell me "Cant blame you for trying" did you know that for every 12 Jobs I bid..... I got One?....oh! my Main job was an Estimator...was gonna be a Civil Engineer or Architect, but a Hot One! got thrown out in field when Superintendant got hooked on Crank....I rocked better than he did sober.....then RSD Hit me at 29....

If I didnt have past good memories...I wouldnt have nay good memories at all......RSD takes everything GOOD about you away...so hold on cuz you are headed for a roguh ride and ifyou are married with kids.....tell your wife its tough...I am ready to lose my Husband of 13 years...and everyday gets worse..not better...and this aint my first Rodeo...

I Hope I am full of crap and you make it thru this...I hope you get that one more block and its over...but my truth tells me i just sucker punched you.....I think I told you this but I was posting under Budko when RSD first started....I read a few posts and got depressed so i have no idea what was said....

Painman...hang in there and I am here for you...I may not always be flowers and candy but I know when you need a hug....or a pick me up! The only way to get thru is is Maning up....one day at a time and hope when you wake up, it was all a bad dream and you will feel great....

Always,
Kim
hey homie2011... wow that is alot. not sucker punched as you may have thought, its just i thought I maybe could be one of those that doesnt have it spread. see where as i was working as a route person for a large company. before that i owned a landscape business(small) but effective and good money. unlike you an injury to my neck , made me chang frm ft landscaper to part time land scaper and full time employee. then i got injured on the job taking out all of my c dics and 2 herniated in L plus annular tear.. (poof landscaping gone . plan was to heal as much as poss. then start up agn(god i loved lanscaping) well as i was grtting my ducks in a row to strt up agn i got hurt agn at work(2 years ag) almost killed me for a simple slip and fall I got a clot in wich hospital missed because they ignored the signs (and me) and rsd became my life.. out of work for7 mnths then i returned to work using a cain thou company was against it and drs were agnst it . they had to let me back because i cld do my job.. the rsd actually made my back worse be cause of the way i was walking then 1 yr later in the hosp. almost paralyzed.. pt and muscle relaxants helped me to move agn but rsd was now diagnosed as pos. and back was still debilitating..spine special ist put me on neurontin and v epidurals all trying to get me back up but rsd spred. got worse no im out bcz of rsd. i could no longer hide my pain from my dr,s or my family though is thimk i still hide a decent amnt. pain is life..unfortunate but true i go on because tommorrow will happen regardless. i look for answers not the cure i preferr the pain not be masked . i grew up knowing that if you r in pain its so you dont let youself injur it more so dont cover it .. address it.you r right thy are not addressing the issue just trying to cover or mask it.. and we are left to accept what they offer. as you my legs are large part of my life.it will damage me more than just the pain..i have used every paet of my body during my life to be artistic, scientific and musical.. with out my legs i am not me. it will be very hard to recreat myself again..thank ouy for understanding and sharing. I am truely sorry for the reasons you can be so understanding. but very glad to have you to sw..all my dr,s and medical treating professionals say that i am bull headed and stubborn, and a real pain in the mule. i am awaiting rspns frm ins before i start seeing a psychiatrist(i have no use for them) but my dr,s believ that i have to see one to ensure i get the treatment i need. ie tests and specialists. i also just rec a packet from rsdsa and they said they will help where nad when they can. spring is on a slow aproach and this will be the first spring i will not be (able ) to play in the gardens and make landscapes .and my family will have to maintain the property..at least for now i can still play the piano and horn. i still have song writing with daghtr poetry with oldest don and art with all of them incl. wife. but with my memory failing even that stuff is challenging. wheb thy r not home i study the human anatomy and phsiology and the nervouse system..of course that just explains how it works, not how it breaks. so i have lotsa questions for many diff drs. also wj=hen comp can get it for me i will be going bk to college familt wants me to teach not become a dr.they r affraid ths injury will consume allfacets of my life then, so looks like teaching music and minor in medical.. sorry for novel and its crazy path. i oftes digress or forget what i was saying lately. thank you and god speed

 
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Old 02-25-2011, 04:04 PM   #9
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Re: rsd spread fast..normal or not

Painman...my rsd started due to re ijuring neck from old head on collision when I was 16....so I was injured...just ignored it.....family motto....life is pain.....hey ha ha...did you ever do commercial landscaping? I was curb and gutter....we hated you guys...you'd cut our curb cuz you would forget a line......then city would red tag us cuz the head and gutter were missing......lol..good times


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Old 02-25-2011, 09:06 PM   #10
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Re: rsd spread fast..normal or not

Hi Painman,
I have only had RSD for a year and 2 months for the first 2 months it was only in my left foot, then it spread up my entire leg to my hip, I swear this happened overnight. then about 2 months later it was in my left hand and about two weeks after that in my right hand. It thankfully and please knock on wood, has not spread any further. I was getting nerve blocks lumbar and stellate once a week for geez probably 3 months, I have the scs which will hopefully keep it from spreading further or at least slow the process. I know its very scary and seems to spread overnight once it starts. My toes on my left foot dont bend or flex (even though I did tons of physical therapy) and my lft hip is starting to freeze up I can no longer cross that leg over my right one. I know this isnt good news but its my experience and all i can offer. I hope you get a block very soon, I wish you werent suffering so bad right now. We really need so much research and doctors need to be better informed. wishing you well and pain free. kelly

 
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Old 02-25-2011, 09:36 PM   #11
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Re: rsd spread fast..normal or not

hi kellyevans..thankyou for your story..it is starting to effect my hips as well and my lower back by my tail bone..the swelling is intolerable..icannot fit into my shoes (wich i got 1*1/2 size lrger bcz of swelling to begin with) my legs barly fit into my pants.I am walking and driving in spite of the pain. my blocks got moved up to ths tuesday..in the mean time i have contacted numerouse organizations and foung a research foundation located in fla. also wrote a letter to the A>M>A regarding their guidline for diagnosing and treating people for rsd and also their lack of interest in supporting research to treat tge injury instead of masking it..Just trying to keep busy to take my mind off the pain. went to pt yesterday they tried to send me home(i refused ) have to work through the pain. again thankyou and good luck to you as well god speed

 
Old 02-25-2011, 11:30 PM   #12
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Re: rsd spread fast..normal or not

Having a bad night...again....1/2 point vodka and 6 bud light...I'm writing it down so when I wake up I know what an jerk I was...rsd an nd vodka don't mix ....brings out the worst in me.......have I perished half way thru maze? I #$&%#$#$ hate rsd...thanks hater for the love and lose......maybe its all for the best..maybe we'll find a better place...lost on music...like.its an addiction...ipod addict......why us? Why me? us? Take another shot....kim..you piece of crap...wanna call old connect and buy 100 oxys..and just let it take me..let rsd take me......help me! I'm dying inside......kim is gone..who am I?
Drunk kim.peace.....dunks tell the truth...my dad always told me just how he felt......
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Old 02-26-2011, 10:13 AM   #13
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Re: rsd spread fast..normal or not

yeah vodka is bad...silence the animal thats what we all want but i dont thnk it helps..
as the rage builds
and destroys our will
we will go on
we just dont know how long
we look for answers
but get more questions
as the pain blasts through us
we can only dream on.
dream of better days
to get us through this craze,
and we will go on.

look we all have loved ones so we go on one day at a time its all we can do. we (all of us ) face our pain alone. for nobody else is in our head our thoughts, our feelings. and even though we share what we can here we dont always share every thing. we all hold onto pain in our solitude. that is our choice. the pain of our injury isnt though. just hold onto hope even though it isnt easy to do so. and remember tomorrow will come "hopefull"with better days. until then we share with each other what we cnnt seem to share with the ones we live with for we do not wish to burden them with anymore than what we believe we have done already.we , all of us here in these threads are bretherine of some sort , a different kind of family. our bond is this thing called rsd. we will understand each other better for we each suffer a similar life.
i hope this can console you homie2011 and any one else who reads this.. we all are strong on some days like me today and on other days we are falling apart inside.
lean on this new family we are forming for answers support and understanding ..and strength when we need it most. wishing all a pain free day. god speed from you broken brother...

 
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Old 02-26-2011, 08:39 PM   #14
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Re: rsd spread fast..normal or not

Hi painman yes Dr. Kirkpatrick heads up the RSD foundation here in tampa, It is about maybe 15 minutes from my house, would love to go there but they do not take health insurance, you must pay upfront and I can not afford to go there. But the pain management Dr. I go to interned under Dr. Kirkpatrick I am very happy with my doc.
As for shoes I have only been able to wear crocs and only mens crocs, womens crocs arent wide enough to stay off my feet, any shoe thats touches my toes or the sides of my feet kill me ugh. Physical therapy is good but when you are in a bad flare doing to much can keep that pain cycle amped up. My pt never worked me when I was having a bad flare thank god! when she told me that it could keep the flare going it made sense to me. when I am having a bad flare I do very minimal of anything until it eases up. even with the scs I still get flares my scs helps with the pain but not the weakness or the heaviness in my limbs. hopefully your block will stop your flare, so you can catch your breath for a minute. good luck painman!!!!!!!

 
Old 02-26-2011, 10:15 PM   #15
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Re: rsd spread fast... normal or not?

My husband had rsd in his left shoulder, arm, and hand. That was the only place. They did a block on him and within hours, it spread to his back and chest. They put an iv in his right hand and it spread to his right arm and hand.his docs say they will never put a needle into him again.

Last edited by marliz101; 02-26-2011 at 10:16 PM.

 
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