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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 06-17-2009, 06:11 PM   #1
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Unhappy Have You Ever Heard of This?

I was in Intensive Care for 2 months and on a Ventilator for 2 weeks (due to respiratory arrest from asthma). I was hospitalized for another month at a Rehab Hospital to regain strength, etc. Soon after returning home my left arm started to hurt extremely bad; then the burning pain started. The results of the emg were not good. They have it in a brace now but it continuously hurts and the burning, shooting pain is very difficult to handle. Arm and hand now are pretty useless (wife is typing this). The Neurologist and orthopedic surgeons are at a loss but are really trying to solve this mystery. We have heard RSD, Double Crush Syndrome, and others. Pain seems to be shooting from the shoulder. Several MRIs show osteoarthritis and disc disease but physicians are saying that is not causing this. My Neurologist has contacted the University Hospital at UVA and they are going to see me soon. I am sooo afraid that I will have to deal with this for the rest of my life. He has me on Hydrocodone as needed but I try to stay away from it. I assume pain management will come if the University Hospital can't solve this. Just wanted to see if anyone else has experienced this mystery nerve damage. It would make more sense had I been injured but I wasn't. Thanks for listening...

 
Old 06-18-2009, 09:08 AM   #2
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Re: Have You Ever Heard of This?

sorry for what you have had to go thru and are dealing with right now too. one thing you really do need to do here first is obtain every single document from that hospital you were in that is contained in whats called your central file? if you were actually in a different hosp for rehab, get all of those too.

its very simple to get the records. all you have to do is call the hosps and ask for the med records dept and tell them you need to obtain all your medical records. they will send you out a release of info to sign, and i would tell them you want EVERYTHING generated there espescially any testing results or procedures they did on you too. this would at least tell you what areas they were messing with that could have actually damaged nerves or even more crucial, your sympathetic nervous system. it is the SNS getting damaged or affected that would actually be the underlying trigger for even the chance of having RSD develop in you. the thing here is it can also be damaged by a simple blood draw being done the wrong way to the point where it actually damaged some vascular structures too since the SNS does govern our dilation and constriction of bloodflow. but even an IV,under certain circumstances could also damage vessels. did you happen to have an IV in that arm or hand somewhere? alot of what could be your individual 'possibles' here really depends upon just what they did to you while hospitalized. that is why you just really do need those records,ya know what i mean?

what exactly IS double crush syndrome? i believe i have heard that term before but really don't know what it is. do you actually have your own copy of that EMG/NCV that was done on you(if you don't, get one)? this would just show the affected areas of low or non existant nerve flow. since this is going on at all, i would very highly recommend to you that you just obtain any and every single doc note(from any and all docs you have had consults with on this) and continue to keep obtaining EVERYTHING from any doc you will see and especially any real testing results from any test they have done on you already and will in the future from here on out. then just keep the most pertinent info(test results are really crucial here) in some type of an expandable folder type thing that you can simply take with you to any appts you have or if there is any problems that could send you to an ER, all you have to do is just grab that folder of all your info and go. this will be sooo helpful for any docs to just have to go to and give them a baseline for any testing they may have to do on you as well. it really saves time and alot of hassle just even having this for them, trust me.

i had to start doing this when my son went into liver failure many years ago and then when all my crap happened i just started doing the very same thing too. it just allows you to really stay on top of your own healthcare. it also gives you ALL of the info and not just bits and peices you will get from most docs, espescially the specialists.

but i would start making the phone calls here to the hospitals and any of the docs or any place that did any testing on you that was not done in the hospital, like other radiology facilitys and such? once you actually fill out the releases and send them back,it usually takes only about a week or so to actually just have them show up in your mailbox. i have been doing this since 1999 and have never had any problems in obtaining records this way. depending upon the place where you are getting this stuff from, they could possibly charge you some sort of fee, tho here in MN where i live, i have never had to ever pay one dime for all of my and my sons continuing records. it just depends. i do wish you lots of luck in just finding the reasons for your pain and symptoms. but getting all those records will really help the docs to try and figure out some things for you, believe me it just helps. it is kind of like playing detective when you are trying to find any answers to the true source of any medical problem so all of the overall 'evidence" you can gather just helps the docs and points them in a better direction. its a matter of trying to track back your ongoing symptoms to the source type of thing right now.

but please do keep us posted here. we are here to help you. good luck,Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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Old 06-18-2009, 06:17 PM   #3
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Re: Have You Ever Heard of This?

I agree with Marcia on getting copies of all your records.

RSD can happen without having any injury at all in some cases. I've known a few. I can say that getting rsd that way is rare but rsd itself is not rare. :-)

Diagnosing rsd is based on ruling out anything else that could be causing the pain and physical findings. Usually the criteria used for diagnosing rsd is: Pain, discoloration of skin, temp change of skin, burning, swelling, sensitivity to touch/air, changes in hair/nail growth, joint stiffness.

BUT you do not have to have all of the above to have rsd. We all have the same dx(diagnosis) but we do not show it or are affected by it the same way. Not everyone has stiffness, loss of ROM or sensitivity to touch, changes in nail/hair growth, swelling. Just to name a few.

With me, I had major swelling, pain, no burning, no sensitivity at first(a couple of months in I had sensitivity to air but not touch), skin and temp changes I did have. The hair/nail changes happened a few months in. I didn't feel any burning until around month 5 or so. Unlike some, I don't burn all the time, it comes and goes. Uncontrollable jerking and muscle spasms happened a few months in as well.

So, at the end of the day, rsd dx isn't easy to diagnose because not everyone shows the same symptoms and even all of the ones I named can come and go over the course of a day depending on weather, mood, stress level and activity level.

I always hope someone else will be lucky and not have it, but if you do, we're here to help you should you need it and answer any questions you have.

Hugs,

Karen

 
Old 06-19-2009, 02:38 AM   #4
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KWB1228 HB User
Re: Have You Ever Heard of This?

Hey, thanks Gaollan and Karen for getting back. He had at least 7 IVs and pic lines that they kept moving. I asked this question and was pretty much told that those wouldn't cause this issue. Pain/burning is getting worse and very hard to handle. I (the wife) is calling the hospitals today for the records. We are also waiting for the University of VA hospital to call for his appointment. We were told that we would most likely be able to pin this down going that route. I sure hope so. Thanks, Karen (Johnny's Wife).

Last edited by KWB1228; 06-19-2009 at 02:42 AM. Reason: Clarification

 
Old 06-19-2009, 04:17 PM   #5
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Re: Have You Ever Heard of This?

You're welcome! Keep us updated on how things are going. I know we'll all be hoping for "good" news for him!

Hugs,

Karen

 
Old 06-20-2009, 11:44 AM   #6
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Re: Have You Ever Heard of This?

Hi Johnny and Karen,
Sorry to meet you this way... I'm with Karen(Gaollan-our Mayor) and hoping that you are dealing with some sort of "left over junk" from everything that you have gone through recently - and the body does have a way of reacting to having had all of that equipment in/on us for periods of time - we need it - and it helps us - but we kick back when we are recovering... as an explanation for my comments - I worked in and around health care for my entire career - was a clinician until a severe latex allergy - became a "patient safety expert" then was on my way back to becoming a Physician Assistant when RSD jumped on me right at the end of my clinicals - no I'm not one - I can't and won't begin to diagnose I'm not fully trained and wasn't licensed/certified - but I've been around thousands of medical blocks if that helps you any if I make any suggestions which is what I sometimes do. I also now live with this monster RSD - not for as long as many of the others - so I don't give RSD advise as often as I feel their advise is better, more qualified and just plain more experienced - all f that stuff said - Marcia and Karen are dead on with what they suggested - get the records and go over them - if nothing else it is going to help both of you feel like you are looking for the underlying cause of what is going on - which I know from painful experience is tearing at both of you - especially after what you have both been through physically and emotionally. I don't know which UVA hospital (or clinic at this point) you are dealing with - but I have worked for years as a consultant with that healthcare system and they are truly one of the good ones in this country - they have a system of caring in place - they have a wonderful Pain Center - which I hope you don't have to use - but if you do - they have one.

You said that they have you in a brace and that you are staying away from your pain medication. I understand where you are coming from. I think that most of us try to stay away from the “hard stuff” as much as possible when we first start this journey – and like I said we all hope that you are on a totally different road than us and that this is NOT RSD for you – but, if it is – we live in a use it or lose it situation. So speaking from personal experience, the immobilization after my initial injury is the worst thing that ever happened to me – I don’t know when you next talk to your doctors – but ask them if you can begin to move your arm, but only if you can tolerate the pain. If this is truly RSD you need to be moving it and touching it and using it as much as possible from the beginning. Research "desensitization" and start working on it if you can tolerate it and your docs feel like it is a good idea - also ask them if the pain center is experienced with RSD and if so, can they start working with you just on the 'off chance' that it is RSD so that you don't get behind with your physical therapy. Be very careful working with a physical therapist who doesn't know what RSD is... we all have horror stories about that. The only serious NO NO is do not use ice on it for any reason – it may seem to feel good but it will do further damage to the nerves and vascular system. This of course is advice only if you have RSD – but from my memory and a little bit of research won’t do damage to double crush syndrome unless they are suspecting the initiating nerve damage there to be in your neck – do you have an idea of where they think the damaged nerve sites there are? Secondly, have they given you good explanations of what double crush syndrome is? I’ve got some great information on that in an easy to understand format (drawings and English – not doctor speak!), that happens to be in a reference site online – I can’t post it here but I can figure out a way to get it to you if you would like to have it.

I think I’ve babbled at you enough for a first talk, mostly I truly hope that you are both getting enough rest with all of this worry and stress. I know you have already had a very difficult several months and it has probably felt like much longer than that. Keep in mind that we are here for you and are willing to answer any sort of question – none of them are strange – if this does end up being RSD – it ends up entering all aspects of your life and someone’s been there so if you’ve got questions someone has either got an answer or an idea or is willing to brainstorm about it with you. Just remember to take care of each other like it sounds like you are doing a great job of doing – Karen you’re a great typist so Johnny is going to have to whistle tunes to you to keep strengthening those lungs of his so you don’t worry any more while you’re typing now isn’t h? (I’m teasing – if you knew me in person you’d get even more of that…)
Gentle Hugs, Lissa

 
Old 06-20-2009, 01:52 PM   #7
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Re: Have You Ever Heard of This?

LOLOLOL Love ya girl! Been kind of busy, but gonna shoot off an email here at ya. If I don't do it now, I'll forget, yet again! lol *wanders off to email before going back to work*

Hugs,

Karen

 
Old 03-10-2010, 08:31 PM   #8
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Re: Have You Ever Heard of This?

i was diagnosed with sympathetic nerve syndrome or disorder. i had really fried myself trying to yank a baby car seat out of a large vehicle. 10 on the pain scale landed into my scapula in back and into shoulder and into underarm pit for 2 years. took over 40 doctors to figure me out - again i say 40 !!! was such a depressing thing. finally, after taking major celebrex (drug of choice ) and on oxiycotin for 3 years, had it under control. i call it a sleeping giant. before 10 years later, if i get radically stressed, it comes back and only can control the pain with oxiycodon or cotin. see a pain management specialist who deals with NERVES ! been there and lived is all i can say.

 
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