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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 08-02-2004, 10:46 PM   #1
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Rude dr. says RSD does not spread.

The rude dr. that I'd seen had said RSD does not spread. I went into tell him that uping my nuerontin made me forget and feel scatter brained. Talked about RSD and he said it does not spread from my Arm(Breast cancer surgery) to legs. I told him it started in arm, then both feet, and then both legs. Their numb, they tingle, they burn, joints hurt (could also be from lupus), muscles weak, can't stand to be cold and gets extremely painful from being cold. Heat makes me feel better, love the hot tub. In my arm, if someone grabs me slightly it hurts or touch it hurts. I get sinus headaches depending on weather in eye areas and base of neck. When the weather changes to stormy or cold it makes my condition worse. My EMG tests a few years ago were all normal. Dr. also said that RSD would show abnomal EMG's. Gee I wish I didn't go into tell him about the neurontin. Are these true? I thought RSD can spread and not be a rare. I also thought normal EMG is not uncommon. He's got me thinking it's in my head, and that my rheumy told me all wrong about it. What is the scoop on it? He's got me so confused and was rude. Like I am lying to him about the symptoms and how painful it is. Can't wait til my normal dr. comes back. Help, I think I'm going insane.

jiliebean

 
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Old 08-02-2004, 11:49 PM   #2
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Re: Rude dr. says RSD does not spread.

Hi. You're not insane. The doctor you saw is ignorant and rude. RSD does spread.

I honestly don't know about the EMG's. I would think that it would depend on whether you have CRPS type 1 or 2. Type 2 is when nerve damage triggers the RSD. Then I could see the EMG picking that up. But type 1 does not involve nerve damage, so why would the EMG be abnormal? But again, I'm just thinking out loud here - I really don't know. I'd like to hear from somebody who does know about this.

If I were you I would erase this visit from my mind and start again with your regular doctor.

Take care,
Julie

 
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Old 08-03-2004, 06:35 PM   #3
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Re: Rude dr. says RSD does not spread.

Yes RSD can spread. My pain doc's assistant nurse said the same thing to me, and I just blew her off. Fact is RSD can spread. It dosen't spread on everyone and it dosen't always spread in any pattern if it does. It's also not uncommon for people to have a negative result on any test, because there is no test that can give a positive result for RSD. There are criteria you must meet to have RSD, and I don't quite remember where I read them all, but maybe someone else here can help. Once you meet or exceed those criteria and only then can you be diagnosed with RSD. No test can prove or disprove anything. The blocks are a good diagnostic tool, but are not successful for everyone (also have to take in the docs skills on placement), so I'd say, time to find a new doc.. - Jessica

Last edited by Administrator; 08-07-2004 at 01:37 AM. Reason: website not allowed

 
Old 08-03-2004, 08:01 PM   #4
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Smile Re: Rude dr. says RSD does not spread.

Hi Guys,

I don't know about the EMG question either. I know that when I have had mine done, the atrophy from my leg muscles showed up, but I've never had a doc tell me they were going to diagnose RSD via the EMG. I'm thinking what you said, Julie, sounds right to me.

Sharon

 
Old 08-03-2004, 10:29 PM   #5
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Arrow Re: Rude dr. says RSD does not spread.

Short answers according to my research: 1) Limitations of EMG/NCS: Can not assess function of small-fiber nerves involved in most neuropathic pain/RSD. 2) RSD spread is common (~70% in prominent study)

Details:

Small nerve fibers responsible for transmission of pain, temperature & sympathetic activity consititute the vast majority of a peripheral nerve (~70%).

Autonomic nervous system & QST can assess these small nerve fibers affected by CRPS1/RSD but is not specific to RSD just as abnormal EMG findings are not specific to CRPS2 so there are other diagnostic criteria to consider.

"Background: In 1994, the International Association for the Study of Pain (IASP), after development of consensus by a group of pain medicine experts, suggested that the term complex regional pain syndrome (CRPS) should replace reflex sympathetic dystrophy (RSD) and causalgia—CRPS type 1 for RSD, and CRPS type 2 for causalgia. However, the IASP diagnostic criteria were never fully validated, and several pain specialists raised concerns about their clinical and scientific value. The criteria have poor diagnostic specificity and may result in overdiagnosis of CRPS.

RSD is a descriptive term meaning a complex disorder or a group of disorders that may develop as a consequence of trauma affecting the limbs, with or without an obvious nerve lesion. RSD also may develop after visceral diseases or CNS lesions or, rarely, without an obvious antecedent event. It consists of pain and related sensory abnormalities, abnormal blood flow and sweating, abnormalities in the motor system, and changes in structure of both superficial and deep tissues (“trophic” changes). Not all components need be present.

The term “reflex sympathetic dystrophy” is intended to be used in a descriptive sense and does not imply specific underlying mechanisms. Most of the definition of RSD can be applied equally well to causalgia; however, CRPS type 1 (ie, RSD) occurs without a definable nerve lesion, while type 2 (ie, causalgia) refers to cases in which a definable nerve lesion is present.

Evans described RSD as a syndrome with the following manifestations:

Pain and swelling at a site remote from the inciting injury
No obvious local tissue damage
Altered skin color
Altered sweat production

On the basis of the description by Veldman et al, diagnosis of RSD can be made if the following clinical grounds are met:

At least 4 of the following 5 symptoms/signs are present: unexplained diffuse pain, altered skin color, altered skin temperature, edema, reduced active range of motion

Symptoms aggravated by activity of the extremity
Symptoms present in an area much larger than and also distal to the primary injury

IASP diagnostic criteria for CRPS are the following:

The presence of an initiating noxious event, or a cause for immobilization

Continuing pain, allodynia, or hyperalgesia that is disproportionate to any inciting event in severity

Evidence at some time of edema, changes in skin blood flow, or abnormal sudomotor activity in the region of pain

Exclusion of conditions that would otherwise account for the degree of pain and dysfunction. The distinction between CRPS with (type 2) and without (type 1) nerve injury is based on findings on electromyography (EMG) and nerve conduction studies (NCS). * The clinical validation of these criteria still is being debated. *

Associated signs and symptoms of CRPS listed in IASP taxonomy but not used for diagnosis are as follows:

Atrophy of hair, nails, and other soft tissues
Alterations of hair growth
Loss of joint mobility
Impairment of motor function, including weakness, tremor, and dystonia

Sympathetically maintained pain - May be present
Staging has no clinical value, but for historical interest the authors would like to mention that the course commonly was divided into the following 3 stages:

Acute or hyperemic
Dystrophic or ischemic
Atrophic

Pathophysiology: No consensus exists regarding the pathogenic mechanisms involved in RSD. Hypotheses include (1) sympathetic nervous system (SNS) dysfunction leading to sympathetically maintained pain (SMP), (2) peripheral dysfunction, (3) central dysfunction, and (4) inflammatory process."

Complex regional pain syndromes (CRPS) types I and II are neuropathic pain disorders that involve dysfunction of the peripheral and central nervous system (CNS). On the basis of clinical observation and research in human beings and animals, it is hypothesized that CRPS is a systemic disease involving sensitization of the CNS and peripheral nervous system. Central sensitization may maintain the chronic pain state after peripheral nerve healing.

2) Patterns of spread in complex regional pain syndrome, type I (reflex sympathetic dystrophy).

Pain. 2000 Dec 1;88(3):259-66.

Maleki J, LeBel AA, Bennett GJ, Schwartzman RJ.

Department of Neurology, MCP Hahnemann University, Broad & Vine Street (Mail Stop 423), Phila******a, PA 19102-1192, USA.

There are reports that complex regional pain syndrome, type I (reflex sympathetic dystrophy; CRPS-I/RSD) can spread from the initial site of presentation, but there are no detailed descriptions of the pattern(s) of such spread. We describe a retrospective analysis of 27 CRPS-I/RSD patients who experienced a significant spread of pain. Three patterns of spread were identified. 'Contiguous spread (CS)' was noted in all 27 cases and was characterized by a gradual and significant enlargement of the area affected initially. 'Independent spread (IS)' was noted in 19 patients (70%) and was characterized by the appearance of CRPS-I in a location that was distant and non-contiguous with the initial site (e.g. CRPS-I/RSD appearing first in a foot, then in a hand). 'Mirror-image spread (MS)' was noted in four patients (15%) and was characterized by the appearance of symptoms on the opposite side in an area that closely matched in size and location the site of initial presentation. Only five patients (19%) suffered from (CS) alone; 70% also had (IS), 11% also had (MS), and one patient had all three kinds of spread. Our results suggest that CRPS-I/RSD spread may not be a unitary phenomenon. In some it may be due to a local spread of pathology (CS); in others it may be a consequence of a generalized susceptibility (IS). In the (MS) case, spread may be due to abnormal neural functioning spreading via commissural pathways. Alternatively, we discuss the possibility that all three kinds of spread may be due to aberrant CNS regulation of neurogenic inflammation.

 
Old 08-03-2004, 11:13 PM   #6
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Re: Rude dr. says RSD does not spread.

Thank you Josh, exactly what I was looking for..

 
Old 08-03-2004, 11:32 PM   #7
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Re: Rude dr. says RSD does not spread.

Hi everyone! I've had 2 EMG's. One done by a masochistic Dr.--result normal.The 2nd one done 2 years later by a Pain Management Dr. results EMG did not reveal any evidence of abnormality except for hypertonicity of the left cervical paraspinal muscles. IMPRESSIONS/RECOMMENDATIONS--Status post cervical surgery with high suspicion of concomitant of RSD in the upper left extremity.
So that was my experience with 2 different Dr.'s doing the EMG's. And yes I have RSD in the upper left extremity! Hopes this help. Also, I have a 3D bone scan normal, and 2 nerve blocks that didn't work. But I still was diaganosed with RSD by neurosurgeon, pain mgt dr, my PCP and others. And my RSD is spreading into my lower left leg, which the sts machine is trying to prevent it.
Hope this helps. Aloha Skooze

Last edited by Skooze; 08-03-2004 at 11:33 PM.

 
Old 08-04-2004, 07:25 AM   #8
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Re: Rude dr. says RSD does not spread.

HI EVERYONE,
I would not go back to that dr. That dr. will not change his mindset, and you will be worse off, trying to argue medicine with a dr.
Dr. Maleki from Drexel University, Phila******a, pa, wrote an excellent research article along with some other dr.'s on the spread of rsd, and its on the web. RSD has been around since the Civil War. I think JOSHDR, mentioned some of the article in his posting. take care

 
Old 08-04-2004, 08:19 AM   #9
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Re: Rude dr. says RSD does not spread.

Thanks for the excellent info JOSHDR! Very informative and interesting!


Julie

 
Old 08-04-2004, 12:09 PM   #10
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Re: Rude dr. says RSD does not spread.

Don't listen to that dr., and find another.

EMG can't check your small fiber nerve's, and this could be the source of your RSD.
And EMG can make you worse, we can't tolerate invasive treatment remember, I've had EMG and it was torture! (Not to everyone )

And as so many here have said before me IT DOES SPREAD!

Mine did- Mirror Spread- to the opposite hand/arm. To One side of head. terrible headache-(Like Cluster-headache, my neurologist said)

And the strange thing (I am your fellow Breast-Cancer surgery patient) I am having the same trouble with cold and pain in my feets-and legs! I have had the QST-quantitave sensory test. Who showed I have painful small fiber neuropathy. The same terrible pain, but my hand has been a 10 in pain, my feets are 8.
And my hip and knees hurt, and sometimes I have this lightning pain in my abdomen and from my spine.
And I have Myclonus jerks and Tremor.
So I am a living proof, this monster spreads.

But not to all,- remember.
Go to another Dr. and also remember even if we have RSD/CRPS we can allways get other illnesses. And as former cancer-patients we have to check that out you know-carefully.
My neurologist is a neurologist with special interest in pheripheral pain which includes CRPS. She do research/Science (right word?) to try and find new medicine for our pain. Bless her.

Read the info you got from joshdr, write it out and give it to that DR. And have with you to your next Dr.
T

Last edited by TUBA; 08-04-2004 at 12:10 PM.

 
Old 08-04-2004, 09:41 PM   #11
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Re: Rude dr. says RSD does not spread.

tuba,
Isn't that strange how our we have the same thing after breast cancer. I do reach to recovery and I visited a 26 yr old, her chemo destroyed her muscle tissues. Like both upper leg muscles, both upper arm muscles, and the muscles that keep her left hip together. I can't remember what it was called. I'm researching the possibility that adramyacin(doxorubicin) and/or CMF could give neurotoxicity or toxicity to muscles. I have come across a few articles on it, but was fague. Maybe just a fluke, but worth looking into. Rude dr. can't be trusted as I'm finding out. I can't wait my normal dr. is back (probably a different office), hopefully it will be sooner than later. I called the RSD organization and they said it does spread. They are also sending me litature to show the dr. I'd like to say "In your face!!!". I guess since having cancer, I like to do my research (like this site) before I just take what they say is always true. My feeling is the more knowledge you have the better off you'll be. It's good to talk to other people that have your same problems and this site also gives the support we need. I can't believe how everyone has been so nice and helpful to me and I could have not done this alone.

jiliebean

Last edited by Administrator; 08-07-2004 at 01:42 AM. Reason: website not allowed

 
Old 08-05-2004, 01:07 PM   #12
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Re: Rude dr. says RSD does not spread.

Wanted to say though, in taking that information to your doc, it dosen't always change their mind. I was soo proud of myself when I found some information about RSD and it spreading, but when I took it in to the Doc assistant, she said that the internet is full of bogus information. I felt deflated to say the least, so just don't expect to hear what you want to hear, because *they* are the ones with the medical education, and *they* are the ones that went to school for 8+ years. They don't always have the most current education was all I wanted to prove. But, they weren't backing down that they *knew* what was going on with RSD. I had to drop the subject and the only thing that made me feel better was that I think I planted the seed for the doc to get more information. I think he didn't want to look *un*educated infront of a patient and that's why he said that the internet had bad information. I'm still seeing this doc and since then he has made tons of effort to research RSD in the current years. That's all I wanted to do in the first place. Hope that helps - Jessica

 
Old 08-07-2004, 11:59 AM   #13
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Re: Rude dr. says RSD does not spread.

Hello,

1st of all get rid of the doctor if you haven't already. There is no need to have a dr. that talks to you rudely and treats you as an idiot especially with the condition we are dealing with on a everyday basis. Most doctors don't know a hill of beans about SRDS.

2nd I have abnormal EMG , BUT even if that had come out normal my neurologist told me I definitely have SRDS. He also on a routine basis assures me that my memory glitches as I call them can be caused by Neurotin when I was on it. BUt, sense I am now off neurotin that these memory glitches can and are caused by the effort of our daily lives dealing with constant pain. As aggrevating as it is he assures me that just day to day living with pain cause this.

There is no one test that can diagnosis SRDS. There are test that are indicators but unlike anemia that you can run a CBC for a diagnois or lupus that you can run an ANA (antinuclearantibody test) for a positive diagnosis SRDS does not have ONE particular test that comes up positive...more time then not everything that is tested is negative. Diagnosis is made by symptoms , duration, and onset.

I am trully sorry you had to deal with someone with so little understanding.

God Bless
Brighteyes

 
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