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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi All,
I've been very confused about something and I hope someone can help me.... I had a post on the nuerpoathy thread and someone said my symptoms sounded like RSDS. What I'd like to know is what differences are there between neuropathy and RSD ? I hope someone can clear the fog for me....:)
Thanks in advance ,Sherri :confused:
hi sherri :angel: , i'm with u. there are many different names it seems for the same things with ever so slight differences. i was told that i have rsd. to me the only good thing about whatever i have is that it actually has a name which helps when it comes to workers comp, social security, or disability pay. any way, what are your symptoms and have you been diagnosed? i was diagnosed by 2 ocupational theropists. my neuro and ortho were unable to diagnose me. i hope you get your question answered. afterall, that was the only thing i wanted to know. what the hell is wrong with me?? finding out has given me the strength to look more into the desease to learn as much as i can as it seems there is not much help on the outside. this board has been a mental and physical life saver for me. lots of luck, patti :wave:
hi sherri :wave: i have had 5 emg's. i hate them, they actually make me cry. i take 20mg of vallium before i go. i'm also a wc case but i got hurt in 2000. had 3 previous surgury's and the 4th (nov05) is the one that left me with rsd :confused: . the doc hit my spinal cord while doing the cervical anterior fusion. don'y ever feel like your rambling, that what this board is all about, to vent to people who know exactly how you feel. i can't talk to my hubby or kids cause they can never understand the pain and stress we are going thru. ( i hope they never have to go thru this, ok, maybe for 1 day so they can better understand :) i have to wait until next may to settle, i'm in connecticut and they say 1 1/2 that it can take to get to my max. healing. i will settle asap. i also applied for ss. i am getting wc right now and have been getting it since 2000 when i originally got hurt. my rsd is in both hands, wrist's and left forearm. after my last surgury, i switched docs and the new 1 thinks i will never be able to work again :confused: . in my perticular case, when i awoke from surgury, i had NO use of my hands, and a tremendous burning feeling in my hands, also numbness in my hands and fingers more in the left then the right. also in my wrists and left forearm. my doc siad it was just from the surgury and it would soon go away. that was the last time i ever saw him. he kept sending me to his pa who i liked but i wanted to see the doc so i would at least feel that he cared. thats when i switched. the new doc is great and is sending me to pm, i go on june 30th and i cant wait. i am on 7 different meds. neuronton, vallium, vicodin, anatriptolen, naprocin, cymbalta and lidoderm pstches, also lunesta but wc wont pay for it. i don't know your specific symptoms and i also write on the neuropathy web page. the symptoms are very simular and so are the meds. i hope some of this info helped :D . anyway, good luck sherri and write back any time. i usually go on this sight when ever i feel i need a boost. it really makes me feel better knowing that there are people out there just like me who will listen and i will gladly listen to them. have a great night, or day cause i'm in connecticut :bouncing:
Thanks for replying Daylilyfan (what's your first name?),

I never knew about the temp thing,not even seen it in symptoms. The more I read the more I learn that's for sure. . I understand the barometer thing, I hurt alot more when the weather takes a real change. Do you get the sensitive patches of skin that so many on here have? I have temp changes where the pain is. Feels hot to the touch. My pain and numbness spreads ,I have a post about it the nueropathy thread. After I tell me docs what all I have been experiencing they don't know what to tell me. I keep getting told that I need to see the right doc and it may take a while to find him or her. they are probably right.
Thanks again for the info and replying. :wave:
Hi Patti,
Thanks for replying, I am hoping that I have someone give me a definet final diagnosis about what is causing all this stuff. I have a post about my symptoms in the neuropathy board,had lots look but only two answers. Someone said something about RSD to me like i said. I looked up all the symptoms and I don't have the skin problems so I don't think it's RSD. That is good in a way,bad in the sense that I still don't know exactly what is wrong. I read about neuropathies,alot of what I found related to things like diabetes where there was bilateral neuropathy. I don't have any diseases that would cause this.I was fine before I was hurt. Noone can tell me why the pain and numbess are spreading.I am having more weakness too. I do feel like I am going crazy sometimes. I feel even worse though when my 5 year old little boy asks me when I won't hurt anymore so I can play with him. That just breaks my heart.
I had better go.I hope for better days for you and everyone here.

Sorry, I took a while to get back here. It is hard to remember some times which theads you have replied to and to check back on.

My nickname is Jules... short for Julia. Sorry, i forget to put that in my posts a lot.

If you do some more research into RSD, you will find the stuff about the temperature control of the body. One important thing about RSD. Not everyone has all the symptoms, and you won't have all YOUR symptoms all the time. It changes from month to month - heck, some of mine change hour to hour.

About the skin stuff. You said " I looked up all the symptoms and I don't have the skin problems so I don't think it's RSD." Well, back in 2001, I broke my foot -well, it was diagnosed as 3 stress fractures but there was never clear evidence it actually broke. They never were clear on what happened. I was walking along on a flat floor, and something happened and it hurt like fire. My whole leg was swollen for nearly a year. I was in pain with that foot for 4 years. I had 80% of the RSD symptoms. I went to a big wig pain doc in a nearby city for diagnosis, as 2 docs in my smaller town thought it might be RSD. The big wig doc touched my foot, I didn't flinch. He blew on my foot. I didn't flinch. He said "you don't have RSD, you don't have touch or wind sensitivity. Why are you wasting my time?" He actually said that after I waited nearly 4 hours in his waiting room. GRR.

Well, this time, I went to doc at the Clev. Clinic (not Stanton Hicks - but still part of their pain management system) who said she has seen several thousand RSD patients in her career. She said there are often RSD patients without the touch or wind sensitivity. She looked over all the notes from my foot from 2001-2005 and said it sure sounded like RSD to her. So we are saying it was, and now in my latest injury I have come out of remission, not having it new. This time, not touch sensitivity either.

I think they do put a lot into the swollen, red look, and especially the coldness though. Not so much in the shiny ness. I didn't get the shiny skin the first time, but have it this time - but it didn't start till about the 4th month. And, the stuff on the net says sparse coarse hair growth - but the doc at Clev. said it can be more hair to.. that's what I have - increased fine fuzzy hair on my arm where the RSD is the worst. She said the important part is the "change"...

Have you gone and looked at the RSD Puzzles? That is good info to start with. just put that in google and it will come up.
Hi Jules nice to meet you,
I have only a few moments right now and a question occurred to me. I may even post it here and on the neuropathy thread. One of the things ,weird things, I have going on is periodically during the day I get hotspots over the muscles that hurt of my bad arm,forearm mostly,have you ever heard of that? or maybe know why it does ? I have yet to see it in anything I've read. Seems you have read alot about these matters and thought I'd ask you. Just maybe you've seen something about it. i tried looking up neuropathy symptoms and the cutaneous nerve damage I was diagosed with(symptoms don't fit with alot of what I have go on.). Anyway I have a 17 year old son who would like to use the PC.Hope you are well.take care,Sherri

P.S. Hi to Ginger and Patti too :wave:
just to help kind of 'clarify' a few things about neuropathy and RSD.RSD IS considered one of many different types of neuropathic pain syndromes,one of the worst actually.I also have RSD and the wonders of central pain syndrome(the second worst neuropathic type of syndrome,yippie)the thing is the presentation of certain symptoms and the actual CAUSE of the neuropathy type sydrome.there is also a specific type of neuro syn that diabetics get called peripheral neuropathy.others can get it too but it is seen mostly in diabetics as the peripheral vascular system blood flow lessons .

with RSD there are a few "key' things that need to be kind of existant before this will actually trigger itself,one s normally some sort of affectation of the sympathetic nervous system,this would also cause the swings in temp.mine is also swinging up and down constantly and i am always cold at least somewhere on my body.the actual level of SNS affectation or true damage will dictate just what and how certain symptoms that are solely connected to the symp and the para symp will appear or not appear. there is usually a certain level of vasomotor malfunction in the affected limb.I too have this in both of my legs due to the same surgery on my spinal cord that also damaged my SNS pretty badly.

swelling is also a key thing that is usually only seen in people affected with RSD and not any other forem of neuropathy that I have read about.

when I first went to my pain clinic and having already had the excruciating hypersensitive and non stop stinging and burning that I had in my l arm on up thu and over both shoulder blades Dxed by my neurosurgeon as central pain syndrome,my PM wanted to just make sure by doing the stellate injection.i also already had horners syndrome which was caused when my sns was damaged too.well,i had absolutely no reaction to it what so ever so he told me that this was definite central pain and not RSD.the central is also caused by a totally different set of is actually caused by damage to either the thalamus in the brain(people who have strokes in this area run a very high risk of obtaining central at some point)but also the thalamic tract in the spinal cord,when that is damaged it can trigger the central pain syndrome and also a wonderful syndrome called brown sequard where you can no longer feel hot/cold/or surface pain.I havethis on the entire right side of my body yet I can feel the horrid pain of the RSD in my knee on that same side only because the RSD is actually generated sympathetically.but further up,take a needle and jam it into my inner thigh or my stomach and tho I can totally feel the sensation of the needle i feel absolutely no pain what so THAT is just plain bizarre let me tell ya.

the thing is,depending on just exactly what is causing the neuropathic pain to develop or trigger itself, will actually dictate the way it will present and also the different variety of the true neuropathic type of syndrome.its all sooo much fun.

I personally have so much inner spinal cord damage to many individual spinal tracts that my symptoms of all my like five seperate wierd syndromes that keep popping up and being Dxed since my surgery,keep kind of showing themselves in some very freaky and bizarre ways and some tend to overlap each other.I just don't know what is actually causing what anymore,ya know?

If you actually do a bit O research just on the sympathetic nervous system both the symp and the para sympathetic you will probably see alot of your own bizarre symptoms there and will actually explain why you are having some sort of problem within a specific area or body damage just there(my SNS damage happened right under the c 8 nerve somehow when it was 'accidently' damaged while my NS was attempting to remove what was basically a glob of blood vessels from inside of my spinal cord.all that digging around in there caused one heck of alot of damage to many many areas)because the sns governs sooo many different body system functions,has caused me tons of problems with all kinds of system functions from my temp control to the motility function within my bowels which I now have to manually massage just to keep things moving on my R side now.

the best way to determine just what type of a neuro pain syndrome you have is to look at what the underlying cause actually most cases it can be figured out like i was able to do with all of my specific types of damage.then compare symptoms from something like a web site that actually deals with it.or just google things til you hit on the right symptoms for your type of neuro pain and any accompnying stymptoms(trying to google just "neuropathic pain syndromes" would be a good start).there are just soo many different types of neuropathic pain syndromes out there being Dxed in people like everyday.causes are many but unfortunetly,the hellish type of pain is basically the same type of hell only with a few nasty variations.with my central and my RSD,some of the symptoms are very much alike but there are also some very big differences.go figure,they both just suck tho,lol.

i hope this helped and didnt actually cause anyone more confusion(i am like that sometimes)wishing you all a very tolerable day,marcia

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