In Which Direction Does it Spread?
 

ok, i broke my left wrist last yr....developed RSD in left wrist, hand, arm, even up into my shoulder. i've previously suffered w/plantar fasciitis in my left foot, almost 2 the point of surgery! NOW, the drs think i have RSD in my left foot - much pain all over my foot, burning, knife-stabbing pain, etc. can RSD affect one side of the body?? pls help!
p.s. most of u know i have epilepsy....and had started the drug Keplin 12 days ago 2 help my Lexapro work better. well, just started having seizures - had 2 get off Keplin - even had 2 begin Attivan..... helped settle my nerves! :grouphug:

RSD can spread anywhere in the body it wants to, including internal organs. Not to scare you with that info but it's the truth. RSD spreads via our nervous system which touches every single square inch of us.

There are three "types" of spread, Mirror spread, which is when it spreads from the left side to right or right to left. Continuous(what has happened with you) when it spreads up or down one side of the body. Independent spread is when it goes from left to right foot or left foot to right shoulder.

Hugs,

Karen

wow....thks so much 4 the info! my wker's comp can't understand how it could spread from hand 2 foot!! :winky:

Hi NancyinLA,
RSDSA is a national organization for RSD. Their annual meeting was here in Scottsdale Arizona, so I got to go. They will have a DVD of the 2 day seminar. lst day was for RSDers and 2nd day was physicians and therapists etc. They have a lot of information in their web site. They have a spot on the web where you can put your zip code and they will give you the closest location for a support group. They will give you a phone number and contact name. It's a good way to find out good Drs. therapists in the area familiar with RSD. Another good website is" rsdrx.com Dr. Hooshmand for years was a prominent Dr. in Florida. His website is still up and very informative. He retired. A part on the website is puzzles. It's 140 questions by patients and his answer. Worth looking at. For instance, information before going to dentist. We don't want RSD in our mouth, which can happen. I take precautions and he has me take antibiotics the day of the procedure.
Hope the best for you. your friend, loretta

Hi Nancy
mine has mirroed from my right leg to the left,,even the original site[small cut on r-heel] is where it started on the left leg,,then consumed the left leg ,migrated,,,Good advice is to not wig out,,everytime i did,,it made it worse,,,its hard to stay in a calm state of mind when you see it spreading ,,but it does calm my flares down when i stay busy and stay calm,,good luck with you,,maybe its not rsd,,my hope and prayers are with you as well as with everyone here ,,,,,,,,bobber

Hi Nancy,

I wish I could tell you RSD doesn't spead. There are some in the medical fields that think it doesn't. I can tell you for me it has gone fullbody. It started in my right arm and shoulder then left arm then my torso and legs. The worst thing you can do is get too anxious about it only makes you feel worse. Ativan is great for helping with the anxiety (at least it works for me).
Keep in mind RSD acts differently for all of us. Thus, the reason Western Medicine has so much trouble manageing the pain.
I hope you find peace and just take it one day at a time.
Sherrie

Good point Sherrie
But i think one of the biggest problems is that rsd is on the back burner,,you wouldnt believe how many dr's and technicians dont even know what it is,,,thats why I put my hope in God, In all due honesty,, i didnt know what it was either until this year,

Hi all,
I had an appointment a few months ago with a neurologist ( from my regular medical insurance, not WC) whom I haven't seen since as i never returned!!

Here's why.......I was telling him how concerned and worried I was about the RSD spreading and he said..."Don't worry, Complex Regional Pain Syndrome (RSD) doesn't spread...that's why it's called 'regional', because it stays in one place....." :Noooo:

As soon as the appointment was over, I hobbled right OUTTA that office..

Hope4thebest xo

Rsd
 

RSD can for sure be on one side of your body. I had surgery on my right hand and came down with RSD on rt hand,arm and shoulder. I also understand that it can move to opposite side? Are you getting nerve blocks? I got nerve blocks along with physical therapy and it really helped---the two go hand in hand. The most important thing is to keep things moving---even if it hurts!! Its strange, I have partial epilepsy also. I wonder if there is a connection between the two??? I take Lamictal for my seizures. I hope what ever treatment you are getting brings you much relief from your pain. take good care---keep in touch----hutch

Rsd
 

I sure don't blame you for running fast out of the door. It is a fact that it can and does spread. I am amazed that a doctor who specializes in Neurology is not more familiar with rsd more then that----but it happens all the time!! I thought thats why they are considered specialists??? If they are not familiar with something, they should admit it, research and then get back to you. They should at least consult with their colleges who are more familiar with it???

Rsd
 

I got my rsd about 2 yrs ago, after right hand surgery. It took about 6 months to almost completely resolve. I started getting botox injections (my second round)---now my rsd seems to be returning? It also seems to be going into my feet and left hand, do you think this is possible. I didn't know it could come back like that? You are right, it is very hard to stay calm when it feels like it is spreading. How long have you had your rsd? Is it getting better?? take good care----hurxh

Hi Hutch
its been 7 months for me,,what speeded up my spread was that i had a THR on 4/13 without a continous block,,Everyones rsd spread at a different rate,,mine was boosted because of the hip surgery,,staying calm is very important and exercise is inparitive to a recover or a remission,,,my gut is telling me that being that your in like a reinstatment of rsd,i would aggressive attack it with a pain management and bombard it with exercise and back this animal back into its cage, i feel very confident that your in a stage thats very crucial,,time is a valuable thing,,in the last 2 weeks, ive seen mine recede,Since then,,,ive been in the pool aqua jogging an hr aday 5 days a week with a light full body workout in the gym. Im not spazing out, and am trying to stay focused,,,i was a certified PT for quite some time,,feel free to pick my brain on a regime,,or anyone else here as well,,Im always asking for help too,thats what were here for and if anyone here wants to contact me ,my phone number is available,,pm me,, I dont want to just survive anymore i want to Live,,,,,,,,,,,and pray to the Lord,,he will heal,us as he says,,,diligent hands rule,,,,,,,,,,your friend,bobber

My RSD started in my upper right extremity after 2 rotator cuff repair surgeries (May 2007 and April 2008) The ortho surgeon suspected it in June 2008, sent me to PM doc, who did about 25 or so trigger point injections during the summer in my upper back, neck and head. By Oct 2008 the RSD was in my head and my sympathetic nervous system was pretty whacked. I didn't get my first block until christmas eve 2008. I suffer from severe head pain, especially after using my arms for anything strenous.

I'm almost certain I've got it in my right leg too. It burns and stings almost all the time, it just hasn't felt right for several months and I know I'm not crazy. I have varicose veins in that leg, but I've never had my veins bother me before now, and its been over 15 years since I developed them while I was pregnant with a 9 lb baby boy. The leg also gets grossly swollen at times - usually when I'm in a flare - and the knee and ankle get stiff and sometimes get those RSD sparks of lightning in them. I walk at least 3 miles a day, usually 4 or 5 - I figure like everyone else on this board says the exercise is hopefully keeping the RSD in leg from advancing too far if that's what it is. I just had a doctor test me for lyme again (test #5 in the last 6 months or so). Maybe a tic bit me and that's what lyme feels like. Could be.

I like the idea of a "chill pill" like the Ativan. I don't currently take anything like that, and I have a terrible time sitting still, for instance, I can't remember the last time I watched TV. But I'm afraid of being tired all the time, too. Do you end up napping a lot when you take it?

Sandy

When you get rsd and are able to beat back all the symptoms, it's called remission. There is no cure. Remission, like with cancer, means it can return at any time for no reason at all, or because of another minor injury or even illness. Since everyone is different, there's no way to predict how our bodies will handle rsd nor how fast it may spread or not.

I've had rsd for over 6 years now. Within 11 months it was in all 4 limbs. Since then it has gone full body. I got a broken at knee and 2 weeks later is when it all began.

Hugs,

Karen

No nerve blocks - 2 much pain 4 me resulting in temporary relief! i go 2OT twice/wk; PM dr once/mo; psychologist once/wk; & neurologist twice/yr. i've had epilepsy since age 16 - taking Tegretol XR 200mg and a 100 mg plus phenobarb. Taking 1500mg/day Neurontin & 10mg Lexapro.....take Ativan 4 anxiety or "impending" seizures. Also was prescribed a compounded "Keg Gel" topical pain cream for my pain areas. My RSD, as i said, began in wrist (left arm) & went 2 left foot! I've been heavy researching RSD sites 4 "traveling" of RSD. good sites: 1)http://www.ampainsoc.org/pub/bulleti...8/advocacy.htm
2)www.rsdinfocenter.com/rsd-progression.html
and an article: Patterns of spread in complex regional pain syndrome, type I (google it!) can't type 2 long....take care!:)

Sandi
the ativan or xanax ,klonpin ,,any antidepreeant will help,,my flares useed to be consistant late in the evening[between 4-6pm],so i would take half a pill,,wait for half an hour then take the other half,,,its better to use alittle,,when you first start a new med,,you can always add,but you cant take away,,,certain meds,,like oxycotin or mscotin or any time release ,,you cant cut in half,,ask your dr,,,oh by the way ,,good point you made,,i didnt have varacose veins either until rsd,,i have a bunch of little ones near the bottom of my ankles, and im not over weight or up on my feet alot,,,another plaque from rsd i guess,,,,,,,,,,bobber

Hello---did you say you live in W virginia still? What does THR stand for? I do (although I hate to admit it to myself) believe you are very correct that my rsd is reinstateing itself. I do have access to a pool so I will start doing exercises that way. I had my left wrist operated on 3/5/09, maybe that has something to do with it flaring up again? I also question if my botox injections could of aggravated my rsd?? I am not seeing a doctor for this--what type of doctor do I go to. The first time I got rsd it was my hand surgeon that sent me to a pain management doctor who gave me nerve blocks--only thing with that was the shots only worked the first 3 times and then it was no longer effective. I am not sure that would be the way to go again?? I am very leery of pain meds--they scare me. I do take ativan occasionally, so maybe I should take that a little more often for now. Oh, what does PM me mean?? I am not very good at the computer lingo yet. I go to John Hopkins for my epilepsy, dystonia & arachnoid cyst, maybe I should call JH to see a doctor there for my rsd or do you think the exercising will do the trick?? Thanks for your reponse---and what days and times are good to call you?? much thanks---hutch:hug:

rsd
 

I had no idea that rsd only goes into remission---but I am just learning this. I only have it badly in my right hand and arm, also less severe in my left hand and my feet are bad---they feel like a very hot-prickly-burning sensation. Also my feet feel swollen? How do you tolerate your WHOLE body with rsd? are you on pain meds? take care and thanks so much--hutch::eek:

jus' replying to PM (Pain Management, i think!) & THP (total hip replacem.)....r u on Neurontin? i have epilepsy, too! i take Tegretrol XR 100mg & 200mg (900 mg/day) & 80mg Phenabarb/day. i live in the south!:)

Hi hutch
I sent you a private message,,look up in the right hand corner of the main page under your name,,,were all here to help,,I trust in the Lord,,if anyone else needs to contact me ,,feel free,,,bobber,,ps nancy was correct too,,..P.M also stands for pain management,,i should have been more specific,,,thx nancy,,,,,,,,,,,,,,,,

Spread Issue?
 

I hate the thought that my first post would be on the issue of spread but here goes. I've have been diagnosed with severe RSD for almost 17 yrs now. One thing I have learnt sitting back and watching people discribe their RSD spread is that many have misunderstood everything there is to know. Not that I claim to know everything but when one lives with this for so many years you do learn something.

First off let me say that it is extremely rare to go fullbody RSD, so many people think because they feel pain somewhere else in their bodies it means the RSD is spreading and that's not true. Let me just say that many of us end up having chronic myofascial pain syndrome due to lack of exerise and normal movement, this is why our myofascial tissue tightens up so when you move one feels pain. Not to forget that our posture is usually out of wack from putting ourselves in protective stances. Some develope fibromyalgia also but not normally within the first few years, this is something that takes time.

I have supported a lot of people throughout my years of RSD and I'm finding that many are being misdiagnosed with RSD as there are so many other things that mimic RSD. I happen to have a very good doctor who is an internist but also an extremely knowlegdeable doctor on RSD. I just asked her last week what percentage of RSD people go bodywide and she said less than 1% and she has seen many people.(Also another RSD doctor told me the same number less than 1%). First off you have to ask yourself do you have " All" the symptoms of RSD when it spreads. Everywhere RSD has hit me and I have been diagnosed by an RSD doctor as having "fullbody RSD" but let me say it took almost 13-14 yrs to get there. I should mention that I was classed as a very severe case right away (month after surgery).

A person will not go fullbody in just a few years. She said to even go to all four limbs takes a many number of years. I find a lot of people self diagnose themselves without going to a doctor who is knowledgeable about RSD and yes they are out there. I've read a few posts where people are claiming to be "fullbody RSD" with organ involvement etc!!!!. I even read one that said they get " RSD skull cramps" may I ask what the heck is that? How can a skull cramp you need muscles to cramp and our skulls don't have any. There is such rediculous things being said from having RSD.

Let me just say that everywhere RSD has spread on me I have always had the discolouration, tempature changes, allodynia, burning pain,swelling with pictures to prove it. From my face right down to my toes even after all these years. It's my belief that people should go to RSDHope and read the articles there on spread, pain by itself is not good enough to say your RSD has spread you must have the symptoms to prove it.

Let me tell you just a few things that some people have said RSD has caused for them. First off there's one person I know ( talk to them via telephone) and he claims RSD has made his stomach so swollen that he looks about 8 months pregnant, not to mention that his boobs are swelling from RSD as well as his brain. Now have you ever heard anything so ridulous?

When I told my RSD doctor this she broke out laughing saying there's "NO WAY" RSD does that, as for the RSD skull cramps I've never seen such a confused look on her face before and I've been seeing her for 16 and a half yrs. She said its people like that who make it hard for people like me(and those of you out there that are really suffering) to be taken seriously for the hell I & you live in and yes it makes me quite angry to say the least.

I bet with everything in my life that these people are WCB claimants trying to get as much money as possible instead of caring about getting better in anyway. I've been pretty much bedridden for all my years of RSD so yes I know what is like to be bad and have this thing affect me from head to toes..yes if you want pictures I would be happy to send them to anyone who doesn't believe me.

I hate to sound so bitter but it just makes me so angry when people self diagnose themselves, no one should say they are fullbody or even 4 limbs without having a Dr. diagnose them. Even Dr. Schwartzman says that RSD does not normally spread to all four limbs but until late into the diease process (15 yrs) and everyone that I know to be diagnosed by a Dr.( don't know anyone else who has been postively diagnosed as fullbody) this is the time frame it has happened to them. You would think that the numbers for fullbody spread should be 99% if you listened to those who diagnose themselves.

What makes me angry is if people are going to claim this stuff then they should have to back stuff up with medical reports when it comes right down to it, for this is what is making it hard for those of you out that need to be taken seriously when it comes to your RSD. How can doctors support us if people are claiming that RSD does these ridulous things to them. I'm sure most of you out there are honest RSD sufferers who don't make everything seem worse than it truly is. For those that want to claim such stupid things then please back it up with your medical reports and your drs diagnoses. I think its only fair to those of us who really need a doctors compassion and to be believed by them.

I apoligize for sounding so negative but just really think about what I've had to say its the god's honest truth because there's one thing I don't do and that is lie. PLease cut me some slack for trying to be as honest as I could be and I believe if you really think about what i've said you have to wonder if its truly the spread of RSD. Please let me end by saying I know that RSD does spread to other parts of our bodies again my issue is with those who claim to be fullbody is less than 10 yrs. Remember this claiming it is one thing but proving it is quite another..........Hope you all have a great day and may your future days be filled with less pain.

"I bet with everything in my life that these people are WCB claimants trying to get as much money as possible instead of caring about getting better in anyway. I've been pretty much bedridden for all my years of RSD so yes I know what is like to be bad and have this thing affect me from head to toes..yes if you want pictures I would be happy to send them to anyone who doesn't believe me."
shelmora

I am a WC injury, CRPS I patient...I find your notion that all WC plaintiffs have their own agenda and attempting to take the full-body RSD Crown away from you, ridiculous. I mean, really..who would want that crown???
Further, if you knew anything about dealing with WC, it would be easier to use one's personal insurance to get immediate medical care than it is to deal with WC ins., that makes the patient wait...wait..wait..until the RSD is irreversible...as in my case.

This isn't like the scene in Jaws where the actors attempt upping one another by showing their battle scars from an encounter with an ocean predator.

I hope you feel low pain soon as your anger toward other RSD patients isn't productive to others; nor is it healthy toward your person as stress increases pain flares.

I will keep you in my meditation prayers.:)

I agree with what Dew said about some of your comments being hurtful towards all RSD sufferers. No one on WC would like having that 'crown' and i'm sure all of them wouldn't chose to go down that route unless they have any other choice!!!

I'm 14 and have had RSD since I was 12 years old. It started in my left leg after an ankle sprain and then spread to my right arm after a knock caused my blurred vision and then to my left arm earlier this year after I fell and knocked my arm on some ice.

Each time it spread, I could tell!! IMO, most people know when there RSD has spread as they will have a lot of the classic symptoms of RSD, the pain, the swelling, colour changes etc. Each time my RSD has spread, I have gone to my Doctor and he has confirmed a spread of the RSD. I have been diagnosed with RSD by every doctor I have seen, including the top childrens hospital in the UK who have ALL said that I have RSD with spreading etc.

I have friends who have RSD that has spread full body in a matter of months - some in a matter of weeks etc. It's been proven that theres no rythm to the spread of RSD - it will spread however it wants, whenever it wants!!!

I do agree about seeing a doctor to confirm RSD. My mum and I have ALWAYS done that and have always ruled out any other possibilities and I think most people on here have!

Please think about your comments. Theres LOTS of websites out there that say RSD can spread full body in a matter of months and my doctor agrees with that also. I think some of your comments can be quite hurtful towards RSD sufferers.

I wish you the best of luck and hope you have a low pain day! :hug:

First off let me make something clear here, i wasn't referring to all WCB claimants I was talking about the one who claims to have swollen breasts, belly and brain. Also those were my doctors words not mine and I'm sorry if i didn't make that clear. I think you can agree with me that people should be diagnosed by a doctor and to claim that everything that goes wrong with our bodies doesn't mean its RSD related after all most of us are in our middle years where most anything can happen. Sorry if I offended anyone that wasn't my intention but what I was trying to make clear is so many self diagnose themselves. If any of you out there don't believe that there are people who try to con the system then you should take your blinder's off because they are out there. This is why I said doctors reports should back them up and that goes for everyone not just people with WCB claims.

Let me say also that there is no anger towards others with RSD, that statement I find a little hurtfull, I can see with that said my point was totally missed. I would think that those of you who really have RSD would see my point, don't you think it belittles us when those out there claim such crazy things, how can we be taken seriously. Thankfully I never have had a problem with any doctors but I do know that some doctors I have talked with say they are on guard because they are being told things that don't make sense.

Let me put it to you this way and then maybe you can see where i'm coming from. When it comes to survey being done by people with RSD do you think its fair if people put that they are full-body etc-- when they haven't been diagnosed by a doctor and that goes for putting any answer down that isn't backed up by a doctor. Then it throws out the whole survey as being unreliable. I have seen for my very own eyes that when I tell someone with RSD that I had new areas/symptoms then within a week or so the samething was happening to them so can't you see my point.

Oh could I tell you guys somethings I have heard the past few years from people and if I spelt it all out here you would then see that I'm not a bitter RSDer but someone who is trying to stick up for those of you out there who are really suffering. If you don't think that I live a life of hell think again why would I come on here and pick on people who suffer this horrible diease if anything I'm trying my best to make it right so that all RSDer's get treated fairly by doctors.

Hey Dew do you know of a person with RSD in their feet and legs that would ever put themselves in a pair of hiking boots and jeans? Well I did. funny thing is my legs and feet are not my main RSD site but yet I have never even worn a pair of running shoes since it went into my legs and feet. Haven't even worn jeans in years. So again I ask you does that make much sense to you. As I said if I put up all that I know to be true here you guys wouldn't be picking on me but you would be questioning these people who claim to be so bad. I really don't want to keep this going just take what I've said and know that I to have RSD and I'm not out to put all people with RSD down as a matter of fact I would like to see a cure ASAP so that all of you could have your old lives back. Yes I do have a heart and a big one at that. PLEASE know i'm here to defend you guys from those who try to make themselves worse than they truly are.

I can't speak for Dew...
I can only speak for myself....

FIRST... I understand and appreciate your wanting to help others with RSD. It is a terrible monster that we are fighting.

SECOND ... Please remember that there are no 2 people who are fighting RSD that are the same. We don't have the same exact symptoms. No two of us react the same to medicines, therapies, or any other thing out there that is used to lessen our pain.



I have had RSD 5+ years....Started in my foot and within 5 months it had spread full body. Organ involvement began about a year later. NO... I did not self diagnose...why would I want to... I wanted to deny it was spreading... I WANT THIS MONSTER TO GO AWAY.

I have seen 9 doctors (mostly specialists) who all have diagnosed RSD and confirmed its spread.

My legs stay a constant DARK Maroon/Purple.

I wore jeans before and continue to wear them today... my physical therapists and doctors have told me that they believe it is best FOR ME to keep wearing what I was used to as it would desensitize my legs. Sure it hurts... but other materials feel worse on my legs than my jeans. I can't wear shorts as the air hitting my legs feel worse than my jeans.

As far as shoes... I have wore hiking boots since RSD. I have a very light weight pair... I dearly pay for even putting them on and take them off as soon as I get back inside. But I can't go outside in the winter in the snow wearing my Crocs. If I have shoes on I wear the soft fuzzy lined Crocs. They are light weight and hurt less than any other shoes I've tried.

As far as Work Comp goes... I was injured by a coworker through no fault of my own. I had to fight work comp to get a settlement so that I could pay my doctors who so graciously continued to treat me while I was dealing with all of the WC stuff. My settlement was just enough to cover medical expenses that I incured while waiting on a settlement.. I recevied $0...not one penny went in my pocket. Then again... I didn't want the money... I WANT MY LIFE BACK!!!

Work Comp is different in every state and every country.

I sincerely wish you the best.
:)
Abbie

Dew58
 

Hi Dew58.
I am sorry you had to get this disease and even more sorry that you had to deal with WC. I know a little about WC in the States and I know that, to say they are heartless, is an understatement.

Part of the reason for the mistreatment of RSD patients is the fact that, there are people out there who do try to scam WC and Insurance Companies.

I for one applaud Shelmora's post and, having had CRPS Type2 for 27 years and having had to jump through many hoops with wrong and late treatments because of being disbelieved at first feel the same way about those you try to con Drs. and WC, WCB and Insurance Companies.

I never had to ask others about symptoms or to send me links to articles or web sites about RSD; I had the symptoms and, eventually, after many tests and procedures, I also had the Doctors reports.

I am a member of another RSD support group and over the years I have gotten a pretty good idea of who really has RSD and who does not or, who has a very mild case. RSDers who are really in bad shape can be known not only by what they say (post) but also by what they don't say.
When I read about scull-cramps or swollen brain or belly and breasts from RSD, I have to wonder what is going on with their bodies. Since RSD, to my knowledge, does not do that.

I have known Shelmora for a number of years now and I can tell you that she does not have to vie for a crown; she has a bad case of RSD and her medical file, which I have seen, leaves no doubt about that nor does her body.

Shelmora is the most compassionate person I know and always there for anyone who needs help even though she is barely managing her own life and home. Her anger is directed at those who scam the Doctors and the system, making it so much harder for those who need help from WC, WCB, Insurance or the medical system.

If people were always honest about their condition, you would not have had to fight so hard to get proper and timely treatment for your RSD and you may not have developed it in the first place.

There is no doubt that there are people who see "RSD" as an easy way out of having to work and they will try their best to scam the system. Surely, you must know that.
Shelmora's post referred to those scammers and not to those with actual RSD.

I for one will never feel offended by someone expressing anger at RSD scammers; after all, I have the disease.

I hope you have an easy day and night and find some relief of your pain.

woodsman

as for WCB
 

Hi Abbie.

I would like to clarify the issue of gain from RSD.

Here in Canada RSD can be the way out of the workforce.
If RSD is caused by a compensable injury and is documented and acepted by WCB, WCB will pay a pension to the injured worker.
So, you see that, here in Canada it can be profitable to have RSD.

As for shoes, I can imagine the pain you must suffer.
I can only wear Wallabies or Hush-Puppies, at least one size larger than my foot size; any other shoes makes my feet feel like they are being crushed in a vise.

I wish you pain relief and a cure to be found soon.

woodsman

The Natural History of Complex Regional Pain Syndrome
 

Hi. Shelmora notes that with most people it takes 15 years to spread to all limbs. I'm assuming this is a reference to The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009; 25: 273-280, free full text at http://www.rsds.org/2/library/articl...lexanderGM.pdf. If anyone hasn't seen it, consider it as required reading. And indeed, the article states that:

Contiguous spread occurred in most patients early (1 to 2 y) and remained the most common type of spread during the first 10 years. Spread to other extremities occurred throughout the disease process with no specific pattern whereas generalized (all extremities) spread was most prominent late in the disease process (after 15 y). [p. 275.]

There are a number of take home points in the article, the most salient being:

This study shows that although CRPS is a progressive disease, after 1 year, most of the signs and symptoms were well developed and demonstrate only moderate increases with disease duration. [p. 227]

What this means, in effect, is that there is only a slow progression from wherever you are at the one year mark. (Another reason why intervention in the acute stage is so important.)

The other thing of note - although off topic for this thread - is the discussion of "cognitive and memory difficulties" at p. 278. Eight years into this, I'm aware of this big time, what we used to call "brain rot." But any more on that is properly the subject of another thread.

Mike

I just want to be proactive here to prevent any upsets on this thread

where we welcome you to NeuroTalk, Shelmora and woodsman, and where your own opinions and experiences have relevance, yet I do need to point out that we strive to allow support for *all* members here, whether or not their symptoms fit what others may define as the parameters of the illness.

It seem to me to be very presumptuous to pass judgement on the symptoms of others, or what their motives may or may not be related to their illness,
especially amongst people that you do not even know.

No one knows for sure what this or any illness is actually like for someone else, and so whether or not you agree with their symptoms and diagnosis, attributing dishonest motive to specific symptoms is understandably going to cause offense


I hope this discussion will therefore stay on topic in order to stay open

thanks

I take vicodin and baclofen. :-) I wouldn't move without something for the pain. lolol I was on work comp for the first year and a half and out of all those months I was given something for the pain for 2 months, that's it. Since it spread so quick I learned how to keep my mind busy and just deal with it. Not like I had much of a choice. lol I'm not sure I tolerate full body, I've just accepted it and have found my limits and ways to keep myself busy. When it gets rainy it hurts but when it eases I'm happy. :-)

Hugs,

Karen

Well, let me first say that I'm sorry that you have had to deal with this for so long and at the extent that you do. I applaud you for saying what you said buuuuut I do have a question....doesn't the affected area always have sight symptoms??? I was just diagnosed with rsd/crps in my right foot (4 months) and there is never a moment that it isn't shiny, purple, red with white spots, sweating, cold or anything else that it wants to do...hahaha. *That foot has a mind of it's own...lol* Just curious cause I'm new here. I had never heard of rsd/crps and am trying to understand/learn all I can about the disease. I'm trying not to get depressed or worry myself too much but it's not easy when you have a pain that reminds you 24/7 (as you know) and then reading all the stories......tends to scare a newbie so thanks for the post and wishing you many painfree moments.

Hi Shelmora,
First, I am compassionate to the fact that you have had RSD for so many years and therefore have experienced pain and upheaval for a very long time.....
My heart goes out to you for living with RSD throughout the years.

I reiterate that RSD is so very different for everyone (different symptoms, different timeframes) it is very unwise to pidgeon-hole RD-ers into a formula of time,spread pattern, and symptoms.

People express themselves differently, and within their ability of technical jargon. The man with "skull cramps, swollen belly and and swollen breasts" may have legitimate symptoms, only his personal descripton might not hold the correct medical terminology. It could be that he has debilitating migraines, visceral organ involvement, and terrible inflamation, in addition to extreme adverse reaction to meds.

While i, too, take offense to anyone who tries to take advantage of a system, I also am cautious not to judge someone who may not be able to express themselves correctly, but who is experiencing genuine pain that could be RSD-related.

My surgeon didn't listen to me and he was the one taking advantage of me by not following the hypocratic oath and truly listening to his patient.

I also hold that not all doctors are the final word on a proper diagnosis or analysis. As I have mentioned before on the site, I had complained to a neurologist that I was feeling burning in my right leg and in my face. (My RSD started in my left foot.)

He said " Don't worry, RSD/Complex Regional Pain Syndrome) doesn't spread, that's why it's called "regional", because it stays in one place.

Generally, I have learned more from peers and fellow RSD'ers than the docs.

I am a WC case and have had to fight and wait for any treatment received.
I have written letters and made phone calls and advocated for myself, even though I do have an attorney for my own protection.

Like others, I too, as you must as well, just want my life back..
Nevertheless, I am doing my best to come to terms with this new life.
I truly wish you relief, comfort, and hope.

Sincerely!
Hope4thebest

Okay I see that I've stirred up some feelings here and I can see some of you have taken what I've said in the wrong way or maybe I didn't make myself clear. First off let me say that when someone with RSD only cares about what WC is going to give them money wise I have to wonder what is truly their motive. I had one person tell me that they believed because they couldn't work anymore WC owed them a house and should buy them one, you are forgetting that I have talked with some of these people personally and when someone finds out that they could have asked for help in the home but didn't then expects that WC back pay them for it doesn't make me feel as though they are out to get better.

Before I pass judgement on anyone and believe me when I say I know we all suffer in different ways and not all of us have the same symptoms but i do ask my RSD specialists (and more than 1) questions before I "Shoot" my mouth off. You are forgetting that these are not my opinions but the opinions of RSD doctors so are they "WRONG" ? I have written to Dr. Schwartzman with many questions and I cannot believe that a doctor such as him who has been treating RSD for many years (over 30) can be so wrong with his clinical impressions and survey's (of course it depends on people telling the god's honest truth about their condition). If I took the time to write all the stuff here that I've been told and posted a few letters I have received over the years then you can only ask yourself one thing and that is " Do people really tell the whole truth".

One thing I can say is never in 17 yrs have I told a lie about the status of my condition or the severity of it. If you had talked with some of the people I have who claim to be a severe case and saw the inconsistencies coming from their mouths and out right lies then maybe you would cut me some slack here.

So the question I have is why are some of you so against what I've said when its you the real sufferers that I'm defending here. Doesn't it make you mad to know that people are out there claiming to be full-body when they don't have a doctor's diagnoses to say that. Again pain by itsself is not enough to say its RSD spread.

By the way a huge "THANKS MIKE" for standing up for what I said its nice to see that someone else goes by what an RSD educated doctor says. Not to forget RSD Hope and the RSDSA Assocation. I was asked by one person claiming to have RSD if I could write them a personal story about life with RSD, yes they were trying to get a pension through the government. Never would I dream of having to ask another person to write my story I've lived a life of pure hell here my words could make someone pretty educated on what life with RSD is like. Why would someone ask for your personal story or to ask that you write one, well I can see only one reason so they know what to say or what symptoms to say are happening to them. So again you guys please understand that I have seen for my very own eyes and ears that people are scamming.

Let me end by asking this, if you where talking with another (RSDer ??) and you have had the disease for many many years and they for only a very few and you tell them about a symptom they didn't know about then a week later they had the very samething happening to them---hmmm???? and this happened over and over again wouldn't you be questioning what they were up to even more so when no doctor believes there's really any thing wrong with them and that's out of their own mouth. Not to forget this last thing but when i'm being told that they are cheating WC and yes those words came right out of the person's mouth then what i'm supposed to think?

So can you guys please cut me some slack here it just makes me so angry when people are claiming to have things happening to them that are false in the biggest of ways. Again I wouldn't say this lightly, I've heard it straight from those " horses mouths" so to speak. I can prove everything I say about my RSD condition can they??.

Just know that the scammers are out there and they are only interested in money or early retirement and yes its those people who make it hard for the honest ones to get timely treatment or to be treated fairly by the WC's, WCB's and all other insurance companies. Yes this is where my anger lies and how could you blame me for wanting to defend those of us who truly do suffer this horrible painful disease. Don't fool yourself to think they aren't out there.

I will end for the second time...lol..by saying thanks Woodsman for your kind words and support I know what you suffer with and my heart goes out to you as always, you are a true and valued long time RSDer that I admire with my whole heart and love of course. I know you've studied RSD long and hard and i've always respected your input as to what RSD is all about. Sending you a big but gentle hug.

Hi again Shelmora

It seems to me you have made yourself clear. You are upset by people who claim to have RSD in order to get WC or disability money.


However, It seems maybe I didnt make myself clear in my last post so let me try again:

scammers abound in every area of life, but what is the purpose of your bringing this here? Our members cannot stop the scammers, just as you cant.... and singling out symptoms only makes it feel you are pointing fingers specifically.

This thread is about the spread of RSD, and not about whether or not anyone fakes symptoms to get money

I would therefore appreciate it staying on that topic as I feel this continued return to the negative aspects of some who may try to scam compensation for their illness is not relevant to the topic and does disservice to those who are genuinely ill. The continued emphasis on scamming IMHO only draws more attention to it and can have detrimental effects on those who are legitimately claiming for their illness.
As mentioned before, you made your point, and nothing further can be achieved by continuing to make it here.

time to move the conversation back to what the original poster intended...
a discussion on the spread of RSD

thanks

Just to clarify one thing for the record. Once upon a time, after I had been suddenly taken off Trileptal because of a drop in blood sodium, but before there was time to ramp me up on a similar med, and while under intense stress - late catching a flight to go to Philadelphia for treatment - I suffered a bout of scalp cramps that were about the worst thing I ever went through.

So they can indeed happen, whether or not they're in the book.

Mike

Just a bump to bring the original topic back to focus.

Jo -

It was in that spirit yesterday I offered my post re "The Natural History of Complex Regional Pain Syndrome." And my last today, just before yours, dealt with how under "exigent circumstances" we can boldly go where no person has gone before in our personal symptomatology [read: spread of symptoms] whether or not it's in the books.

Of course we may meander a bit here and there, but so long as there is no ill will (overt or implied) I personally don't believe that we have to adopt a per se rule against it. It's part of what can make threads come alive, although having said this I know that it is too easy for me to take a simply question and launch into an extended discussion that misses what the person who started to thread was trying to get at. And while we (I) must be mindful of that, neither should a thread be limited to the "four corners" of the initial post, where what we're trying to do here is have a pleasant (and respectful) conversation.

Having given the question some consideration and with all respect, overt acrimony is another matter altogether, whether or not on topic.

Mike

I believe the key word in any post or posted reply on NT is "RESPECT.":)

Should the topic be open to explore or expand to other realms related to the topic at hand by members that wish to investigate further? ABSOLUTELY.

This is called critical thinking, and we all can learn from such discourse. I enjoy listening/reading others opinions on each post. Anytime there is an opportunity for "growth" in knowledge from one another, it is a treasure.

We learn from each other at NT. Sometimes there may be a spark of temperament that may feel uncomfortable; however, it is the passion behind the discourse that is focused on a mission to explore the topic in an open minded manner.

Mike has a very good argument, as in debate/discourse. Is it necessary that we all have to agree with each other on a post? No, we are individuals and each of our life experience brings diversity to the floor on each post.

With that said, the manner of the spread of RSD/CRPS is diverse. If there was a cookie-cutter answer, I believe there would be a cure.

:grouphug:
Dew

just as a FYI thing..:)

That bump was just a general bump of the original post for all , it wasn't aimed at anyone specific.

Sometimes when the 1st post is bumped up after a reminder to stay with the topic - it just helps for everyone, so they don't have to scroll back to read it.
:cool:

ok like always here of late i am late on this thread. ! sorry..

first of to nancy yes rsd can and will do what it wants when it wants period. and i hope that you are able to get it under control. i know how scary it can be and we all know that we sure as crap dont want it to spread. period..

shelmora i can agree with what you are saying about people scamming the system drs etc. but i think that the problem that people are having here is that you popped in and where very adiment with the post that you were writing . this in no way me beng rude or disrepectful. like you i also suffer from severe rsd since i was 16 . and have documented proof that i have full body and organ involvement and have been treated by very well respected RSD drs.

we are a very close community here and are very protective of "outsiders" (this is to be viewed loosely ) that come and and make harsh statements. that is why most are reacting the way that they are. also we all are aware of people that scam for all kinds of reasons we see this all the time.

i bet you are a very caring person. as are we. we know what it is like to have to suffer with this horrible monster and pray to god that there will be a cure someday .. please know that i was just stating my Opinion .. i am sorry if i came across brash this is solely the way that i am.


hang in there nancy!!!

carrie