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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hello everyone, although this is my first time on the RSD board I have used a couple of the others for along time, mostly the pain management. I have pretty much been speaking with feelbad (marcia) for along time now. She has encouraged me to come on here & do some investigating. I know by now how valuable these boards can be.
So here it is, I display some symptoms of RDS but have never been tested for it. I am newly diagnosed with moyfascial damage & am going to be seeing a new doctor monday for Pain Management. So I thought the best way to learn or take a crash course on RSD it to ask the people who know best, which of course would be all of you. So if you would not mind could you please list your symptoms for me. If I understand correctly, & that is a big if, it can be a bit complicated, for example you don't have to display all the symptoms. I am at my wits end with pain & really want to know what I am looking for for.
I have alot of problems with my shoulders, had shoulder decompression in jan on one, & the chest down to rib area. My arms are so painful & it is starting in my hands, at times my hand can get really cold. There is alot more to it but I am more interested at this time to see what you all have to say.
I would really appreciate it, thanks Sammy
Sammy,
Welcome..
Alot of us don't experience all the symptoms of rsd. I can only tell you my experience and symptoms.. I started from having herniations in my cervical.. Then started with burning, in my hands alot with swelling. I also had extreme sensitivity to touch, trophic changes to my skin, muscle and bone.. Also experienced hyperhydrosis, excessive sweating.. and severe chronic pain... Eventually through the yrs it has spread to all four extremities... I would love to help you out.. Are you experiencing any of the symptoms.??
Michelle
The "hallmark" symptoms of RSD are discoloration of the skin, either purplish/bluish in color, which I call "cold rsd" which happens to the majority of us. It can also appear on skin as very red, almost sunburn looking or deeper and the skin feels very hot, I call "hot rsd", which is a minority of rsd'ers. Swelling is often a major symptom. Pain that is sharp, stabbing and shooting in nature. The skin of the affected limb is also often very, very sensitive to air and/or touch. You can have one or both at the same time.

Now, as Michelle said, we all have rsd but no 2 of us experience it in the same way.

In my case, it began with overwhelming pain. It felt exactly as I described above. Also I had horrific swelling, cold, cold skin, it felt as if I'd pulled my leg/foot right out of the freezer. I had very bad skin discoloration. After having my leg/foot down for just seconds, my skin looked very blue/purple in color, the longer I had it down the deeper the color until it would look almost black.

Within the next 11 months it spread full body, my toenails almost stopped growing, the hair on my legs became sparse, I also have dealt with hair loss on my head as well. The hair on my legs feels wiry and stick out off my leg. It has since, in the last 5 years, also changed color, I have black hair on my legs, well what hair still grows anyway. It's not distressing exactly but ummmm...I'm a redhead and we don't have black hair anywhere! LOLOL

I had in the beginning, sensitivity only to air but not to touch. Over the last 3 years I've also become touch sensitive and can't take showers any more either because of the pain it causes me. The burning that is so often touted as the "hallmark" of rsd, well, I wondered if I even had rsd despite the overwhelming symptoms that fit the dx of rsd exactly. It hit me for the first time, the burning, when I'd had rsd for about 4-5 months.

I think I covered it all.

Hugs,

Karen
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 am a redheaded person as well I have experienced black hair growing on my legs at times instead of red. I also have seen black hairs from time to time on my arms as well. I also went yrs from suffering from RSD and nobody seemed to take me seriously until due to RSD and Cervcial Dystonia (severe and uncontrollable muscles spasms of the neck) I lost permenant use of my left arm. It is now locked in a position where my left hand touches my left shoulder and the only time I can stretch it out is to put my clothes on. I have had RSD in my scalp that caused me to lose most of my hair and at one time I had real long red hair. It finally started growing back out since being on medications for RSD. I would have red bumps all over my scalp and my scalp would get real itchy and fell real tight for yrs I thought it was psoriasis but it was the RSD instead.

For yrs my feet would burn real bad and after standing on my legs for 8 hrs. they would hurt so bad and fell numb when I would sit down. Then my hands and neck started burining and my hands would be blood red and the tips of my elbows were red as well. Then my arm started getting real sharp throbbing pains and everytime I would extend my left arm out, it would feel like an electrical shock would go up my arm. RSD is hard to pinpoint due to the fact that are no real tests to prove that you have RSD. Most doctors go by your symptoms to dx'd RSD. So unless you are seen by a doctor who is familar with RSD then it can take awhile before you're actuallly dx'd with it. My gp was the one who dx'd me but that was because he was familar with RSD. Usuallly a neurologist is your best bet in getting a dx'd if you're suffering from RSD. Hopefully this will help you out, I know you have been suffering for sometime. I hope you can find a doctor soon who can help you.
Hi Sammy,
I was diagnosed this past Sep/Oct. Had left foot surgery in July, and 1-3% of surgeries can result with RSD. I never knew anything about RSD, had never even heard of it but then I had a doctor telling me I had it.. Okay, so here's my symtoms and stuff -- Hope this helps you. In most situations, one must have some sort of trauma (car accident, fracture, surgery) in order for RSD to begin. Remember, I said most, not all. Okay, so my pain continued getting worse after my surgery and I had a burning feeling on my left foot and I knew it was supposed to get better so for a while, I continued seeing my surgeon who didn't offer any diagnostics, but he shot my foot full of numbing stuff. After about a month of that, (and after getting frustrated with him) I went up to UCLA and he had me come back down to San Diego (which is where I live) and get a test called a 3 phase bone scan done. Well, let me tell ya, my left foot lit up like a Christmas tree and my right foot was black. You actually want black for this test. Because my pain was so bad, plus I'm 48 (statistics show that RSD appears mostly in women 40-60 years old), plus the results of the 3 phase bone scan clearly indicated RSD. It's a test that takes a long time, with multiple trips to the hospital. It cannot be done in a clinic, has to be done in a hospital. It's nuclear medicine. I got the call at 3:30 on a Friday that I had RSD and I was told to make an appt with Dr. Kozin. Let me back up for a second. I did go to a PM doctor once, only to get the order for the bone scan. He was a nice guy, but came into the exam room, asked a few questions and said "well, you're not blue, you're not red, so I don't think you don't have RSD". By the time we're red and blue the RSD has progressed. But, I did get the order from him but I haven't had the need to return to him because Dr. Kozin treats me. Even if I needed a PM doc, I surely wouldn't go back to this guy. Early diagnosis is CRITICAL so now I see a Dr. Franklin Kozin at Scripps. He's a rheumatologist, and he's been treating RSD for 35 years and it's only been given a name the past 20 years. I'm what they call a "hot" RSDr, not cold as some have mentioned on this board. I also have neuropathy in both legs which was diagnosed by a neurologist after my RSD got diagnosed. So, my treatment first began with 30days of intense steroids. That was to hopefully give me remission. Well, unfortunately, it didn't so I began a course of Neurontin and that got increased to 3600 daily, along with Cymbalta for nerve pain. It's actually an anti-depressant used to treat nerve pain. These meds have some nasty side effects, but I wanted relief so I took them. I still hurt in my feet and legs, so he switched me to Lyrica and I'm still taking that with the Cymbalta. I see Dr. Kozin about every 3 weeks and I know I'm in good hands. I feel so badly for those who have doctors unfamiliar with it. Not only that, but they aren't being treated correctly for the RSD. There's lots of quack PM docs out there, so be on your toes and be aware.
Regarding you and RSD -- Were you ever in a car accident, or did you have surgery? That's frequently one of the biggies of being diagnosed with RSD.
My neuropathy is kinda nasty. It hurts to get up from sitting position, and I'm slower than before. I'm only 48. Like everyone says, RSD is so very weird -- It effects everybody differently. I'm very much hoping that I'm able to stay out of a wheelchair. I'm so very scared of that. I work only 3 hours a day and love it, plus I have 2 daughters, 1 is substantially handicapped and relies on me for most everything. Yes, I also am fortunate enough to have a husband. I cannot imagine not having him and my daughters.
I think there's a reputable website called Reflex Sympathetic Dystrophy Association -- Something like that. They have the symptoms, treatments, etc etc so it's possible they could also help you.
Glad I popped back in, the sweating...oh yeah.....I think almost all of us have sweating problems. Since I've been taking lyrica it has thankfully stopped the worst of it though as well as that nasty electrical zapping feeling. Seeing red bumps mentioned, I have the "rsd rash" which for me is red spot all over my body and they look like small, med or even large blood blisters. At times they'll turn into open sores. They take up to 2 weeks or more to heal at a time, even the very smallest ones. I'm very thankful they haven't gotten really big or anything. Let's see.....what else......the coldness of my skin has always been constant but lots of symptoms will come and go. I've found over the years that lots of rsd'ers will see their symptoms appear, like redness or especially cold skin, etc, when the pain is really high or higher than "normal".

I can say most definitely in the beginning I thought I was crazy alright, well, more than I normally was anyway. LOLOLOL I was dx'd a month and a half after the symptoms started, but because I was a work comp case my care was delayed, no meds and it then spread like wildfire and well.....there's no going back. I've kept a positive attitude, kept my sense of humor intact and live each day to the fullest. I refuse, have from the start, to let this cruddy stuff run my life. I may not be able to do some things I used to, had to change ways of doing some things and have found lots to keep me very busy. The less time you give yourself to think about your pain or focus on your body's pain the easier it is. When it's really bad of course no matter what you do it's hard to concentrate on much of anything but I still try to keep myself busy. I've begun making things from clay with an eye toward selling them to make money and get more beading supplies to make more bead jewelry. Hoping it'll turn into enough of a business so hubby won't have to keep working 2 jobs.

I wish you much luck sammy on the doc visit. It just takes finding the 1 doc who knows all about rsd and will try everything and anything to battle it with you.

Hugs,

Karen
I am so mad, I found a PM doc who deals with the RSD & the Myofascial issues but he is particapating with my insururance yet, he will be in teh future. After learning what I have about both I would really would have like to have a PM with someone knowledge of these.
Probably why it gets over looked or takes so long to dx because it does have some strange symptoms. Same as the Myofascial.
I have had doctors look at me like I am crazy or a bored middle age married women. I have been in car accidents & I had shoulder surgery, but these symtoms were there before the surgery.
As I said I dont have the symptoms present all the time, but when they pop up it is the strangest things. I am like I am because of the misdiagnosises & I just dont want that to happen again if there is something else present, you know. I am going ot keep popping on here & checking it out. Thanks guys, I was told the people on this board are great, & that is true. 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.
rayefaye,
I just have a few questions for you.. I know that you lost use of your left arm.. How did it start out? Did you slowly start losing the range of motion? The reason why I am asking Is, I've been experiencing a lot of pain in my right arm.. near the elbow.. Its been a little over a month.. I can't turn door nobes, don't have strength, can't even hold a cup a coffee. In the mornings its hard to straighten it out.. I was told by the dr that it was tendonitis.. but now Iam starting to experience the same feeling on the arch of my right foot (same side as the arm).. Can't put weight on it at times.. The dr who dx the tendonitis was my primary.. He doesn't have the best knowledge of rsd.. I don't see my specialist until the end of June.. I've also noticed in the past couple weeks that my muscles are very weak.. You can actually see the form of my muscles when I look into the mirror.. The skin around them just hang. The muscles look bumpy.. Its hard to explain.. I am kind of on the thin side so it looks groce. (spell ?)...
I don't know. I just feel after over 7 yrs of this my body is deteriorating.. I am in that mode of feeling down like everything is just getting worse for some reason.. My whole body just hurts. I have black circles under my eyes that just started and won't go away.. Something just doesn't seem right and I can't pin point it..
Anyway getting off track here.. About the arm.. Is this how you started losing range of motion.?
Talk to ya..
Michelle
Thanks raye I will do that. Michele, I noticed you comment about the muscles. I am just learning but it sounds abit like Myofascial. I have been diagnosed with that & it is so darn painful & everything tightens or knots up. The pain is unbelievable at times. It is getting worse & is making my arms & hands feel very week, at times no strength in them or ROM.
Feelbad (Marcia) has both problems the RSD & Myofascial so she may be able to give her opinion here. Hopefully she will pop on here. I will try to drop her a line next time I post her. Sammy
hey sammy,you made it. it really sounds like you have gotten some really great advice already huh?

michelle,just exactly where IS your RSD area(s)? have you ever had an MRI done of your c and upper T spine areas? what you are experiencing could be a couple of possibilities depending upon what your exact symptoms are on that side. could you list them completely for me? is that arm the ONLY area where you are seeing that atrophic look? any actual neck pain at all? the more specific info you can give me the better i may be able to help,thats all. what you described as being in that arm is actually kind of what my whole flippin body looks like right now. the nearest thing we can figure about this wieght loss crap is that it has to to with my damaged sympathetic and my body actually being stuck in that 'fight or flight' mode that the SNS governs? it also will hype up your metabolism too. didn;t know that part til more recently. its like my body is somehow simply cannabolizing my fat as soon as i put it in. it also has taken what actual fat i once had too. very insane. i KNOW what you mean about it looking gross. believe me.

if you could provide some info it would help. do you also have ANY shoulder pain with this? how is your range of motion with that arm? any severe or stabbing pain when you like raise it above your head or behind your back,or even try and lift something with that arm extended out? Marcia
Marcia,
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..

Sammy,
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,
Michelle
hey michelle,just letting you know that i haven't fogtten about you,i just run out of hand evergy by the time i get down here everyday. i will make it a priority tomorrow to tell you what i see or think about your situation,god it sooo sounds like mine right now. my crap is all from SCI too. you are the very first person i have run across who has this crap from SCI as well. i will be back hon.marcia
sorry it took this long michelle. i keep running out of hand energy by the time i get down here. i am wondering if you happen to have a copy of your latest MRI in your possession? if you do,could you type the summary that is inthe end part of that report for me? i just want to see the actual extent of the compression you have and the extent of other damage.

while i can totally understand the reluctance to even do any surery up there with also having RSD,i am wondering which is less of the two evils here for you too,you know what i mean? its just cord compression will continue to progress over time and could eventually close off your remaining cordspace at that particular level,in which case,it would get ten times worse for you than what you are dealing with right now,you know what i mean? i had to personally make that same type of the lessor of the two evils crap when they found what is called a cavernous hemangioma inside my cord at the c 7-t1 levels. it was a vascular lesion of venous blood vessels that had the tendency to occasionally bleed? it did that on me twice. by the time i actually got to the one neurosurgeon who really truely understood what these were,how they reacted and what my prognosis would be leaving it in or taking it out,i was just in shock over the whole thing mostly because i had not been told by either one of the two other neurosurgeons at any time(even the one who did my two c spine surgeries?) that the cavernoma had actually even bled at all. since it was considered to be an active bleeder,the chances of it bleeding agin were huge so i had to 'choose' which way i wanted to do this. removing it causeing very definite damage to the fine motor in my hands and the nerves that went to my legs and of course all the "unknowns(like the unexpected SNS damage that triggered my RSD eventually?). or just leaving it alone and waiting for that next bleed to paralyze me from the chest down. my NS was pretty certain that i would have another bleed probably much much sooner vs later and that any paralyzation would be a permanent thing and irreversable and they STILL would have to go into my cord anyways at that point justto take it out before it casued even more problems as it continued to keep bleeding off and on. what great choices huh?

i did go shead with that surgery just to take away the absolute fear i would have ahd just waiting for it to "let go" on me and that would be it,i would be ina chair and no use of anything from the chest down. it was seriously the hradest most agonizing decision i have ever had to make in my whole life,but the other option just scared the living hell outta me. i would probably do it again if i had to do over,despite all the hell that i have had to deal with becasue of it,i am still mobile and functional,tho not what i really would like to be. i am now also on disability. cannot work or goback to being a medic/FF that i did for 14 years either. that was the hardest thing for me tohave to let go of,the FD.

how many opinions have you actually obtained about your overall situation at this point hon? god,your body just sounds SOOO much like mine right now too. i cannot gain weight to save my butt right now. i now look how i have actually felt since this all happened in 03. it just sucks. just try and find any clothing that actually fits,huh? do you happen to live near any university type teaching hospital at all? even a few hours away that you could see a good knowledgable neurosurgeon to really evaluate your overall risks here in either fixing this before it gets to a more profound point,or what possible involvement the RSD could create along with possible ways of actually doing that very badly needed surgery while being able to minimize the risks of spreading the RSD? i actually had to have two seperate surgeries on my RSD knee and becasue they used the femoral block,i had absolutley no problems with raising the pain level or severity of my symptoms and also no bilateral spread either. thank god. i just really can relate so well to what you are dealing with with the choices thing. either way it can suck for you in many ways. but quite honestly michelle,i really see,just based upon my experience with spinal cord injury and surgery as opposed to the RSD being there while your cord and the other issues continue to just progress in you,i think i would actually seek out the best possible neurosurgeon for this job and see what possibly can be done with this while you still are able to,you know what i mean? you kind of have to take a good hard look at the risk/benefit and see what would be 'your" best possible option at this point ya know? you are just in a very very terrible spot with this with the potential to be even worse if nothing gets fixed up there either(having cord compression of any degree just presents some huge risks,even if you were ever rear ended in an accident,you know what i mean?). i really really do feel for you and what this means for you hon. but finding the best experts in what you are dealing with can also make a huge huge difference in how you could still treat the potentially devistating areas while minimizing the risks with the RSD. its just finding that 'right' expert witht he level of knowledge and expertise you need for your situation. i went thru three different NSs before i found the only one who really had many many years of experience and just a huge amount of knowledge of my particular issues. this is where you need to be hon.

i really am sorry for where you are at right now. i do know how that feels hon. you just have a very 'fragile" c spine right now because of what is there that could be relieved with the right treatment and level of knowledge in a good neurosurgeon. checking out ALL possible options is just what needs to be done michelle. just becasue you may have checked things out a couple of years ago or even a year ago,does not actually mean that things have not changed either,you know what i mean? they are always doing new procedures on people,espescially at the teaching hospitals. this is where i went,the U of MN here. you just never really know what is going on in the medical world til you start asking questions of them,ya know? i do wish you luck with this hon. please keep me posted on how things are going for you too. Marcia
Marica,
Thanks for taking the time out to talk to me.. YOur so sweat..
Right now. I am ok.. I've had cervical problems since I was 16.. Iam 41 now. I was in a very bad auto accident yrs ago.. I just lucky to be alive to be honest.. Last time I spoke to the dr about surgery.. He wanted me to get the RSD calmed down.. He felt if that was calmed down that the pain in my cervical would calm down..
Even though I do have compression.. Iam not experiencing numbness like I did before. I went though PT for for yrs.. It aggravated my rsd but also helped with the herniations.. I had hard any range of motion in my neck and my right arm.. since then I do..
I do see Dr Schwartzman down in Phila PA.. Great specialist for RSD. He has spoke to my orthopedic surgeon about this. AT this time they both agree that taking care of the RSD is first..
To be honest.. Iam to afraid for surgery.. I have had over 16 surgeries in my life. I am tired of it.. I don't want it.. I think the RSD is out weighting the cervical injuries.. I was told that my RSD is harder to control because it starts from the neck runs down the spine.. I can tell when its rsd pain or cervical pain.. Such a different pain..
I use warm compresses all the time.. I live with it.. lol.. It my new partner.. lol.. Thats helps the pain so much for me.. I am going to be seeing the specialist the end of this month.. I will talk to him about it.. Right now I am losing range of motion. but its coming more from my muscles then the cervical.. Does that make any sense to you?
Today I woke up and felt like a I just went through h&*( the night prior.. I don't know why.. I really didn't do much different other then walk more.. My pain usually is delayed. If I do something on day.. I usually don't feel the pain that day.. I usually feel it the day or even 2 days later... The dr calls it delayed pain, and its very common with RSD.. Try it.. take a top of a pen.. rub it down your injured limb.. my case my whole body this happens.. just drawl a line.. Do you feel the pain right away? Mine usually happens with delay and I'll feel the pain spread.. . Even though I know this.. There still nothing they can do for it..
Today is a down day for me. One thing I have noticed and I have mentioned before on the boards.. When I menstrate Gosh.. my RSD is 100 times worse.. Do you flare from it.?? I hate it.. Today I hate it all.. Today is a pitty day for me.. lol..
Sorry for venting so long.. I will honstly talk to the drs about this.. and see which would be best for me..
I hope your day is ok..
Thinking of you,
Michelle
Marica,
I forgot.. I do have MRI summaries.. I've had so many of them.. I have to look them up.. I am lucky.. becuase I've had so many of them.. It allows them to compare them through the yrs.. Let me dig them up and I'll give you the most recent one..
Thanks
Michelle
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 surgery.it 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
Marcia,
Sorry it took me so long to respond.. I still haven't really read up on all my MRI's. The dr did say that MY RSD Is SIP because its assoicated with the central nervous system. He told me its an exaggerated response of the sympathetic nervous system resulting in chronic irriatation and pain of a peripheral nerve. The sympathetic nervous system along with the parasympathetic nervous system comprise the autonomic nervous system. The neurons of the sns which originate in the spinal cord and run parallel to the spinal cord on both sides. This is what he feels was damaged.. The neurons running down both sides of the spinal cord.. He also said that I have a mirror image spread.. The signs and symptoms appear in the same area on the opposite limb.. This pattern apparently only occurs in up to 15% of pts..
I was reading up on what you have mentioned.. Most of my pain starts in the neck.. then runs down my spine.. and my hands and feet are affected.. with the swelling (not as bad as it use to be).. color change, temp change, this all was from the very start.. Now 7 yrs later.. It slowly started up my arms and up my legs.. Same mirror spread.. I don't have alot of sensitivity as I use to.. Only during really bad flare up days.. I have alot burning.. in hands and feet.. which flare up during activity and the next following days.. I have big time delayed pain.. Temp change is a biggy for me.. THe humitity is horrible for me.. I flare right away.. YOu can sit and watch my hands turn color in mins.. The cold is the same way.. I also get deep bone pain.. Feels like the flu.. I hate it.. There are days where I can be just ok.. Last nite wasn't one of those nites.. I was outside sitting on the porch.. THere was just a little breeze.. Just the slight breeze was so painful on my feet.. Sometimes the fan does that too.. But if you rubbed my feet it wasn't painful.. ITs really weird. Its almost like soft touch hurts and not hard touch..
I was dx from DR Schwartzman.. Actually it was suggested by all the drs I have see through the four yr but I think most of them were waiting to see what would happen.. I was already going through PT at the time... but only being treated for the herniations.. I had alot of test done.. I had the bone scintigraphy, MRI, nerve blocks, thermographic study. .. I had nerve testing done.. which I did show nerve damage.. I can tell what type of pain is from the herniations and numbness now that the RSD as spread after all these yrs..

After getting all my medical reports and reading up on all of them.. All the drs I had seen suggested RSD. None of them but one said anything to me.. That blows my mind.. If they would of suggested to me.. I would have done something about it.. but I can't say what if at this point.. I can only move forward...
Thank you so much for taking the time out for me.. I really do appreicate it..
Hope your doing well and talk to you soon..
Michelle
My RSD happened after I had bunion surgery on my right foot. At first my surgeon thought I had an infection from the surgery because of the coloring of the foot. But that was not what was going on. The surgeon then put my foot/leg into a cast and I wore that cast for over a month. Well after I had been finally diagnosed with RSD I found out that putting my foot/leg in a cast was the worst thing he could have done because this left the foot immobile and that is the wrong thing to do for someone with RSD. I guess it makes the RSD even worse.
---I was finally diagnosed with RSD in 2005. I have the foot/leg changing colors from a burnt red to almost a purplish color. The coloring is not there all the time but the pain is. I always have some swelling. The last five days the swelling has been terrible and so the pain has increased as well.
---The RSD has spread to the other foot and ankle. I also have carpal tunnel syndrome in both of my wrists which my pain doctor contributes to the RSD.
---I do go to a pain center at our hospital and I have a wonderful doctor who I have I great relationship with.
---I am also lucky enough to be able to receive a monthly disability check which is through my former employer. Long term disability was a benefit for us so as soon as I was diagnosed with RSD (I was still working then) I applied for LTD. I was accepted and will now receive this check monthly until the age of 63. I am also in the process of applying for Social Security. Actually I did apply and I am just waiting for a decision. If you feel you are unable to work (which a lot us are not able to) you may want to check to see if your employer has some type of Long term disability as a benefit for you. Good Luck and I will be praying for you.
Chris
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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