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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Wow it can be confusing. I have experianced some symptoms, which come & go. I use to get what I called hot spots on my thigh, like someone was holding a lighter to it. Now at times my hand will turn cold, usually in the morning when getting up. Of course I am always in pain, everyday all day. My hand use to sweat alot. It has not happened at much as it used to. As I said abit confusing. My chest area will just get really red for no apparent reason. My foot used to get ice cold. Everything is so sparatic. My pain is all left sided. I am going to keep an eye on this board. This sounds like it can be hard to pinpoint the symptoms.
That is strange black hair growing on a redhead. I'll bet when some of these symptoms appeared some of you thought you were loosing it abit, huh?
So much to learn. It sounds like alot of suffering & you all have my empathy, thats for sure. I will be seeing a PM soon, I am curious to see if he mentions it. Thanks ladies, I believe you learn more when it comes right from the people who know best, which are all of you. I'll be checking in. Sammy
Hi Sammy, I know what you mean by doctors treating you like you're crazy or some kind of hyprochondriac. I was 19 when I had my car accident and was left with alot of permenant nerve damage. I was treated for everything from being a hyprochondriac to being manic depressive of all things. Even my own family treated me as if I was crazy or making it all up for an excuse not to work. So I know how you feel and there are alot of others who have been treated the same way. You just got to keep trying until you can finally find someone who will be compassionate and listen to you and take you seriously. There is also a sticky note above the posts that lists all kinds of symptoms of RSD and most of don't have all of them. All of us suffer in different ways but the burning and throbbing pain is something all of us have in common. Some have discolorations and some don't so just check out the sticky note above to get a general idea of what all the symptoms can be.
How are ya? I've had rsd for 7 yrs now.. It started from herniation in my cervical spine. 4,5,6.. I also have compression of the spinal cord, spinal stenosis, spurring.. all that lovely fun stuff.. I was a candidate for spinal surgery but because of the rsd they are unable to do so.. At this point all four extremities have that atrophic look. like you my whole body hurts. expecially if I do any physical activity.. It hurts to even touch the muscles.. I was told the body ach feeling is the RSD.. My arm, I was told is tendonitis.. I know its not.. I have the same feeling on the arch of my foot.. I see the specialist the end of June so I am curious to see what he has to say to me..
The severe stabbing feeling.. I get that all over.. well just the extremities.. My finger nails, toe nails, legs etc.. I hate it feels like someone is pushing pins in me out of know where.. I am starting to lose range of motion in my arm.. Can't life a thing.. thats gone.. Can't straighten my arm out.. but I can take my whole arm and swing it around.. so I haven't lost range of motion at the shoulder area.. I can tell the difference between pain.. I can feel when my herniations flare up VS. the rsd.. Its just a totally different feeling..
I can't tell you how many MRI's I have had done.. In the past 7 yrs. My spinal injuries have gotten worse.. Theres not much I can do at this point.. I've been through over 2 yrs of therapy 2-3 days/week.. That helped with the herniations.. What helped the most is the lidocaine infusions I have had.. Its helped with both the RSD and herniations.. The orthopedic felt that once my RSD was under control he felt that it would take some of the herniation pain away.. He was right.. Wow.. I look 7 yrs ago. I couldn't even walk, I couldn't touch the rug with me feet.. Today things are so much better.. I just wish I could get to the point where I could carry a job.. It would just make life so much easier financially..

I am gonna look up myofacial.. I'll tell you what my thought are afterwards.
Thanks to you both...
Crazy week for me.. My son is graduating from school.. daughter had nice 8th grade grad breakfeast.. being a single mom.. looking back through the yrs.. Wow.. how tough it was.. I had a teacher come up to me.. who has been there for all three of my kids.. He said mom.. YOu did a great job.. you deserve a hug.. His wife has rsd and he knows how hard all of this has been for me..
Talk to you all later,
god,unfortunetly you sound soo much like me. i have had to have 16 MRIs just since 01. mostly c spine and knee,but the brain is in there along with the right shoulder which i just had my last surgery on. you know,i too have delayed pain. mine is just insane. i am wondering if your pain pathway is affected at the cord level too. that is what causes the delayed pain crap. there is also whats called delay with overshoot? that is when the pain signals,becasue of damage to the spinothalamic tract(that holds the pain pathway to the brain?)build then wait and wait then bam,they OVERSHOOT and hit you like a wall. does that sound at all familiar? do you have any strange response anywhere to hot or cold? do they feel the same to you at any spot? this would be there too possibly with the damaged pain pathway since they all are governed at the same tract. it would depend upon just how far the compression actually goes. i would think you would be displaying some of the more common SCI type injuries that you would just see with an 'incomplte' spinal cord type injury. the thalamic tract damage in my cord caused a syndrome called brown sequard,that is what the not being ableto feel the difference to hot and cold is,along with not being able to feel surface pain of some levels of deeper pain actually is,a freaking syndrome.

i have so many different 'syndromes' now its just sick really. you can also get whats called central pain syndrome? i have this in the upper torso and RSD inthe lower in my knee. they feel alot alike except the RSD has the swelling and color changes and goes a bit deeper into the affected area while the central is more 'in' the skin type of crap? no swelling or color changes or anything that even looks abnormal at all. the skin and the affected areas "look' absolutely normal but wow,the hell that burns in the skin is just so over the top sometimes(i woke up with this stinging burning hell in the recovery room immediately post op from my spinal cord was just already "there"). this is also courtesy of having that thalamic tract damaged. i am just wondering if you may have some level of the central up there too or if this may even be a part of what has been called RSD? do you have the symptoms of RSD up in that area too? the two conditions can sometimes be misdiagnosed(taken for one another?),thats why i am asking. one condition(RSD) shows real outter and inside symptoms,while the central just 'is". you feel it but it shows nothing in the affected areas. alot of people have just been blown off over and over again by docs trying to get this hell treated becasue of this one thing. pretty sick actually.

one BIG thing i have noticed with just having the SCI in all this is i get alot of 'perceptionary" types of sensation and pain that feels like "something" is being 'done' to my body type thing? this is pretty much an SCI type of thing that just occurs with it. i can always tell what is stemming from just my c spine mess and the problems up in it and what is my SCI crap just rearing its ugly head. i am just wondering how they actually Dxed you with RSD in the spine up there? what types of testing did they do on you to get to that particular Dx? what are your symptoms?

i certainly can understand not wanting yet one more surgery,espescially up in that area. what a nightmare you have been thru. it IS plain scarey,believe me. i knew some of what i was going to lose,but mani never expected to actually get even MORE pain than i had pre op with just having that cavernoma in my cord. every bleed made things worse and just so insane with the perceptionary hell. for two years non stop it felt like someone was trying to just pry off my whole shoulder blade(a prying pressure type of thing?)? it was a hidious pain that never stopped just because it was stemming from the cav just being there type thing? nasty nasty sensation. this is what i ment by the more 'perceptionary" cord related crap.

i just wanted to know what the extent of your cord involvement actually is from what it stated on the compressed areas. this would kind of dictate just how really affected your cord is and what you would expect given the way the tracts run thru the cord type thing? those spinal tracts just carry all the body system governing info depending upon which ones are affected,would dictate symptomology. i actually have three seperate tracts that are some level of damaged with that spinothalamic taking the biggest hit only becasue the cavernoma sat right IN that particular tract. when they took it out,it created alot of crap. i just didnt know it was even a possibility that my dang SNS could even BE dmaged at the spinal level. of course we do know better now don't we?

i am just wondering how many or how much of your symptoms really are actually cord related and how much is RSD or even possibly a bit of central pain? because of the level of compression that is just really affecting your cord right now,you would be considered to be a spinal cord injured patient too(incomplete injury). it would show itself. that delayed pain IS a symptom of cord injury. it also sounds like you have the delay with overshoot that comes along for the ride. you just have such a highly vulnerable area up there,i KNOW how scarey that can be. i am glad you were able to at least regain some things thru therepy tho,that really is a huge thing,as i am sure you already feel yourself.

i really don;t understand just why our bodys look like coat hangers right now tho.i really look horrid,the worst shape my body has ever been in in my whole life. this i am thinking is actually somewhat cord and also SNS related. i do know that metabolism is in overdrive if your sns gets damaged and leaves you in that fight or flight mode. that is where i am stuck in right now and for the last few years. do you have high overall body tone too? are your reflexes abnormally high? the one big thing here when your cord is involved is there IS a very direct connection to the muscles from cord crap. so there could be a very distinct connection of that cord compression to the overall muscle tone and the look that you are assuming is NOT related? it just could be,so ya kind of have to look at every possible connection when looking for that reason. if your overall body tone is high,then that connection is even a higher possibility. if your,i think it is the cortico tract is affected it could be doing things to the muscles too. do you have any myelopathy or spasticity in your legs at all? could you try and list your whole overall symptoms to me? i know some are just almost impossible to describe or find words to really explain them but whatwevr you could give me would help intrying to determine just where they could be coming from. the one thing here is that the docs you have seem to know alot about the RSD part and the c spine issues but i don;t think they are really looking at you as a spinal cord injury patient so they could possibly be a bit tunnel visioned here? you know what i mean? you just DO have an injured cord there at the moment and in the past too. the cord is just not real forgiving yet the overall damage does not always appear on any hard film scan either. it appear to kind of dissappear over time since the myelomalacia comes in and kind of 'cleans up' that scene in your cord. the cord does not scar like other body tissue does either.

take a look thru your past MRIs and see what was actually noted at one time and and if you have your films(my computer room looks like an MRI storage facility,lol)look at what they describe as the full extent of your damage. alot of what could have once showed itself just could have been much deeper at one time but not visable at this point,you know what i mean? this would just give you the fullest picture of where and how extensive your cord damage could be but if mylomalacia set in(it would have been noted in one or some of your ongoing MRIs at one time)it would have cleared the 'look' of it but that doesn;t unfortunetly take away what was once really damaged there. this really is the most insane part of what i KNOW is my level of real hard cord damage and yet it just does not actually show up in any MRI pic at this point. its just crazy really. it showed my level of damage at two months post op,then at one year,it was just gone from the films. your earlier MRIswould show the best of all of what was really initially involved and or possibily damaged too,but alot of what is symptoms is really what gets looked at with SCI,espescially this far out. it is what you are displaying as symptoms and signs that dictates kind of what is and was involved in the overall level of damage from cord damage,thats all. it has been one heck ofan insane journey for me so far,i can only imafine what you have had to deal with thru all these years.

if i can help you in some way,please just give me a holler. i know sooo much about SCI now that i really never wanted to know but had to kind of thing? i am sure you have become very knowledgable as well. i just needed to explain the symptoms and why all this off the wall crap was happeneing to my body post op. sometimes you just have to play detective in order to really understand what happens after certain types of injury. the docs don;t always tell you,beleive me. but i am sure in all this time that has also occured with your injuries too. you just have a pretty scarey compression going on in a very vulnerable place. thats just my concern for you in just living with SCI too.

you have mentioned orthos here but have you ever seen a good knowledgable(in SCI) neurosurgeon for just an eval of the extent of spinal involvement at all and just what that actually means for you now and down the road? neurosurgeons who specialize in SCI would just be much more aware of things from 'their' experience in dealing with spinal cord injury and just that level of expertise that comes with actually going into peoples cords and brains during surgeries kind of thing. orthos,while some are even great,just don;t actually go into that area at all and would not actually have that higher level of expertise in the cord related stuff. it just comes down to overall experience and knoweldge of the smaller things within the cord that can be affected that orthos just don't really deal with. they may know about,but they simply don't 'do', ya know? just a suggestion if you have not yet fully explored the level of damage there yet. i just think the muscle issues you are having just could be more a part of SCI than anything else,given what i am left to have to deal with and how MY muscles have been very much impacted by just the SCI and the overall extent of my damage. this could just be some level of atrophy caused by innervation loss at the right places too. you just need to look at all possible angles to really find the true casue for every strange and insane symptom you can have with what you have going on in that one area. hope i didn;t just bore you to death here,lol. i tend to ramble on sometimes. there are just certain things you have going on that need better definition. have you ever had an EMG done FROM that c spine area on down? this would show nerve flow issues and also muscle innervation loss too. please keep me posted on how things are going. i really do want to know. marcia
hi marcia, i too am new to this board and would love to communicate with you. i noticed from an old post of yours that you are also dx'd with an angioma in your spinal cord. my original injury was from an angioma that leaked into my spinal cord. my angioma is locate at the back of my head just over my cord, so it is inoperatable. i live with a time bomb that the angioma could leak again and you can't imagine what a leak into your spinal cord can do to your whole body. i too have browns sequard. no one can imagine what it feels like to have this dx. once the leak occured all sorts of things developed. i was paralized full body. as the leak progressed all my organs were also effected. after 8 weeks in the hosp. back in 04, i end up with RSD in my (l) upper quad neck, shoulder arm and hand. i have a neurogenic bladder, imbalance, hypothyroidism, eczema, and with the browns seq. have no pain or temp control of the whole right side. you could stick me with a knife on the right and i would not have pain. i would know i was stabbed but have no pain. i have to check water temp before i step into water since my right has no temp sensation. i broke my ankle on the right and had to have surgery to repair it with metal plates because i tried to walk unaware it was broken and made it worse.
to make a long story short i have also gone the gammit of all sorts of pain meds. my worst RSD pain is skin sensitivity on the left, plus of course nerve pain. there is no pain med aside from being unconscious, that helps skin pain as far as i know or any doc i deal with. i take lyrica for the pain but it only takes the edge off. i just recently cut it back to 1x a day and now need to take something in its place. any suggestions?
i'm sorry i rambled on but it's helpful at times to run into someone else who may have the same symptoms you have and can bounce off each other when you need some reasurrance you're not alone in this big picture. thanks, irene

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