Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-17-2010, 12:44 AM #1
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I have been having heart problems for a few years now. I have had 2 doctors tell me my problems are bc the RSD has spread to my heart. I saw a Cardiologist I used to work with today. She was really sweet & knowledgable about RSD!!! YAY!!! This was my first appt. with her today. She did an EKG & an ultrasound of my heart. I have to go tomorrow for a pulomanry function test. I also have to wear a holter monitor for 30 days. Holter monitors record your heartbeats so you know if it finds anything abnormal. It should come in the mail tomorrow of Saturday. I'm a little nervous, but just wanna know whats going on. My cardiologist said if all of this comes back normal, then it is the RSD. Even if it does show abnormalities, she still thinks RSD has spread to my heart. It is already on right side of my body & internal on my stomach. My cardiac symptoms are shortness of breath, racing heart, shallow breathing, hyperventilating, palpitations, fluttering in chest, & syncope (passing out) when these symptoms are present. I think that is it. Will let yall know how the polmonary function test goes tomorrow.
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Old 09-17-2010, 01:55 AM #2
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Damn FG, that stinks !

Good luck tomorrow !
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Old 09-17-2010, 02:26 PM #3
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Quote:
Originally Posted by firegirl View Post
I have been having heart problems for a few years now. I have had 2 doctors tell me my problems are bc the RSD has spread to my heart. I saw a Cardiologist I used to work with today. She was really sweet & knowledgable about RSD!!! YAY!!! This was my first appt. with her today. She did an EKG & an ultrasound of my heart. I have to go tomorrow for a pulomanry function test. I also have to wear a holter monitor for 30 days. Holter monitors record your heartbeats so you know if it finds anything abnormal. It should come in the mail tomorrow of Saturday. I'm a little nervous, but just wanna know whats going on. My cardiologist said if all of this comes back normal, then it is the RSD. Even if it does show abnormalities, she still thinks RSD has spread to my heart. It is already on right side of my body & internal on my stomach. My cardiac symptoms are shortness of breath, racing heart, shallow breathing, hyperventilating, palpitations, fluttering in chest, & syncope (passing out) when these symptoms are present. I think that is it. Will let yall know how the polmonary function test goes tomorrow.
Hi Firegirl, I'm sorry to hear this. Glad you are going to monitored for 30 days. Because RSD is an autononic condition, our internal organs are involved. I saw a cardiologist some time ago and went thru battery of tests. I dailey monitor my blood pressure. Got one at Costco for $30. Only passed out once from low blood pressure.
Sounds like you and your Cardiac Drs. are on top of it. Please know we are thinking of you and hoping for the best. Your friend, loretta
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Old 09-17-2010, 06:36 PM #4
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Blank cardiac dysrhythmia

Dear firegirl -

Please check out the very good thread, started by Ali's mother last month, Vasovagal (Reflex) Syncope and RSD http://neurotalk.psychcentral.com/sh...d.php?t=129261 As blood pressure does not reflect RSC/CRPS of the blood vessel themselves, but rather the autonomic neural inputs into those nerves that "innervate" all blood vessels other than capillaries, some forms of cardiac dysrhythmia, specifically sinus tachycardia, while not being "RSD/CRPS of the heart" may reflect autonomic dysregulation secondary to RSD/CRPS, which in turn affects the heart. See, Cardiac dysrhythmia, Wikipedia:
Tachycardias

In adults and children over 15, resting heart rate faster than 100 beats/minute is labelled tachycardia. Tachycardia may result in palpitation, however, tachycardia is not necessarily an arrhythmia. Increased heart rate is a normal response to physical exercise or emotional stress. This is mediated by the sympathetic nervous system on the sinus node, and is called sinus tachycardia. Other things that increase sympathetic nervous system activity in the heart include ingested or injected substances such as caffeine or amphetamines, and an overactive thyroid gland (hyperthyroidism).
http://en.wikipedia.org/wiki/Cardiac_arrythmia

See generally, Urological Symptomatology in Patients with Reflex Sympathetic Dystrophy, J Urol. 1996; 155:634-637 at 636, FULL TEXT @ http://www.rsds.org/2/library/articl...enot_Rivas.pdf:
There is no proved explanation for reflex sympathetic urological dysfunction among our patients. However, our study suggests that sympathetic dysfunction can result in the development of neurogenic lower urinary tract dysfunction.
Bottom line: there needn't need be CRPS anywhere near your heart for the disease to affect its neural inputs from the brain.

On the other hand, check out Atypical Chest Pain: Evidence of Intercostobrachial Nerve Sensitization in Complex Regional Pain Syndrome, Jennifer W. Rasmussen, MD, John R. Grothusen, PhD, Andrea L. Rosso, MPH, and Robert J. Schwartzman, MD, Pain Physician September/October 2009, FULL TEXT @ http://www.rsds.org/2/library/articl...usen_Rosso.pdf which could be more indicative of CRPS actually approaching the heart.

Hope this is useful.

Mike

Last edited by fmichael; 09-18-2010 at 01:06 AM.
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Old 09-17-2010, 09:16 PM #5
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Hi Firegirl, It sounds like you are going through all of the same things I had going on this summer. I have done all the tests and monitering that you are doing. My symptoms are exactly like yours. My results did show damage from two slight heart attacks that I had. I just felt the symptoms, I did not have a catastrophic event, but the damage was already done. I would like to ask you if Elavil is one of your medications? By the way, you got very lucky with your cardiologist, mine had never heard of RSD, would not listen to me about it and has no apparent desire to learn about it. I am sure that my problems are RSD related, but since mine is the result of a work place injury I am not going to try to link the heart issue to it so that I can get timely medical care. Can you imagine!! It would take 6 months to get approval to have a heart attack, and another 6 to treat it. Anyhow, good luck and try not to be too nervous, Lisa
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Old 09-18-2010, 04:53 PM #6
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Blank atrial fibrillation

Here's another citation regarding the role of sympathetic nervous system in cardiac dysrhythmia, only this time dealing with atrial fibrillation:
Inducibility of atrial and ventricular arrhythmias along the ligament of marshall: role of autonomic factors, Lin J, Scherlag BJ, Lu Z, Zhang Y, Liu S, Patterson E, Jackman WM, Lazzara R, Po SS, J Cardiovasc Electrophysiol. 2008 Sep;19 (9):955-62. Epub 2008 Apr 9.
Abstract

BACKGROUND: The mechanism(s) underlying atrial fibrillation (AF) initiation along the ligament of Marshall (LOM) remains controversial.

OBJECTIVES: We sought to examine the role of the autonomic nervous system in arrhythmogenesis along the LOM.

METHODS: In 31 anesthetized dogs, a left thoracotomy exposed the LOM. During atrial pacing, high-frequency stimulation (HFS: 200 Hz, 0.1 ms pulse width, 40 ms duration, 0.6-12 V) was delivered during atrial refractoriness to different sites of LOM (LOM(CS)= near coronary sinus; LOM(LIPV)= near left inferior pulmonary vein; LOM(LS-LIPV)= between LIPV and left superior pulmonary vein (LSPV); LOM(LSPV)= near LSPV). HFS was repeated after intravenous administration of esmolol (1 mg/kg; n = 9) or atropine (2 mg; n = 12). Norepinephrine (10(-7) M, 0.4 cc) was injected into LOM(LSPV) (n = 5).

RESULTS: The median voltages for HFS to induce AF were 3.2 V, 3.2 V, 8.0 V*(,double dagger), and 12 V*(,double dagger) at LOM(CS), LOM(LIPV), LOM(LS-LIPV), and LOM(LSPV), respectively (*P < 0.01, compared with LOM(CS) and double dagger P < 0.01, compared with LOM(LIPV)). Esmolol or atropine markedly increased the threshold for AF induction. Ventricular tachycardias (VT) and accelerated junctional rhythm were induced in 8 of 12 and 6 of 12 dogs after atropine administration, respectively. Sustained VT occurred within minutes in 5 of 5 dogs receiving norepinephrine injection into the LOM(LSPV.)

CONCLUSION: HFS induced AF along LOM with a gradient of stimulation thresholds from LOM(CS) (lowest) toward LOM(LSPV) (highest). This response was inhibited by esmolol or atropine. These data suggest an autonomic basis for AF initiation in LOM, and both sympathetic and parasympathetic neural elements play an important role in AF initiation. Hyperactivity of the sympathetic neural elements in LOM may be crucial in the initiation of ventricular tachyarrhythmias. [Emphasis added.]

PMID: 18399969 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/18399969

Last edited by fmichael; 09-19-2010 at 03:33 PM. Reason: typo
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Old 09-19-2010, 09:40 PM #7
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I failed my pulmonary function test horribly!!! I could not inhale or exhale at a high enough rate for the machine to even register that I was breathing. I also could not hold my breaths long enough to get a reading. 3 different techs tried & nothing!!!! I'm not quite sure what this means & if anything needs to be done about it. My 30 day heart monitor should come in the mail any day now. It was supposed to be here last Saturday.
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Old 09-20-2010, 12:50 AM #8
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Quote:
Originally Posted by firegirl View Post
I failed my pulmonary function test horribly!!! I could not inhale or exhale at a high enough rate for the machine to even register that I was breathing. I also could not hold my breaths long enough to get a reading. 3 different techs tried & nothing!!!! I'm not quite sure what this means & if anything needs to be done about it. My 30 day heart monitor should come in the mail any day now. It was supposed to be here last Saturday.
Dear Firegirl -

You sound like my wife did five weeks before she went in for a cardiac ablation procedure, one done with extreme cold rather than a strong electrical signal. Assuming you become significantly symptomatic once you're hooked up to the recorder, I would suggest having it "read" long before the 30 days runs. I assume your machine will be set up so that you can press a button (or use a paper log sheet) every time you have what feels to you to be a significant "episode."

In the meantime, are you on any antiarythmia drugs or are they waiting for the test reports?

What concerns me is my (non-RSD) wife's experience, where she was on some old calcium channel blocker until the evening of January 1, 2009, when (while wired up) her pulse jumped to 300 but the doctor on call just told her that if she felt worse, she should go to the ER. A couple of hours later she thought it had passed then she suddenly developed nausea and acute GI distress. She still didn't think anything of it until she lacked the strength remain seated on the toilet. For a while she just wanted to lie on the cool bathroom floor, with a pillow and her robe, but it was soon apparent she was not regaining her strength, at which point we finally called 911, and when the operator asked me what her skin was like, I realized she was in shock. Moments later we had six firemen in our bathroom. Her pulse was still over 270 and she had no measurable BP in her extremities. They managed to thread a catheter up her arm and gave her a large shot of Adenosine, to no effect. Worse, in front of my 11 year old son, who had been woken by the arrival of the trucks, the lead paramedic kept saying she was "too unstable to transport." (Think about that one.) Fortunately, after considering his/her options, the ER doctor on the other end of the line finally told the paramedics to administer another full injection of Adenosine and this one did the trick. They then took her by ambulance to the local community hospital (as usual, UCLA wasn't accepting incoming ambulances) but no matter. Between her response to the Adenosine and hours of continuous EKG monitoring, they had a working hypothesis that would ultimately be confirmed as a diagnosis: AV nodal reentrant tachycardia. And 2 hours after she got there, she was discharged with a prescription for a better drug, what I believe was a "Class Ic " sodium channel blocker of some sort http://en.wikipedia.org/wiki/Sodium_channel_blockers which kept her more or less stable until she had her successful procedure a month later.

Wikipedia has a decent article under the heading "Antiarrhythmic agent" with good links from there at http://en.wikipedia.org/wiki/Antiarrhythmic_agents As soon as you think that "an episode" has been recorded on the halter monitor, I would move Heaven and Earth to get an ASAP reading so that you can be given the appropriate antiarrhythmic drug, before things get more interesting. In the meantime, if s/he can give you something, pending a final diagnosis, it may well be a good thing.

You should also have gotten a high-end ultrasound of your heart (aka 3D echocardiogram) to measure the efficiency of your heart valves, as this may limit the range of some of the newer medications which may be available for your use. I stand prepared to be corrected by any healthcare professional - which I am clearly not - but if your doctor has yet to order an echocardiogram, especially in light of your pulmonary function tests, you might think to politely raise the issue. Sooner or later, your doctor should want to know how your "ejection fractions" are looking.

Hang in there,

Mike

Last edited by fmichael; 09-20-2010 at 11:18 AM.
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Old 09-20-2010, 04:50 PM #9
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Hi Firegirl,

So sorry to hear about the problems you are currently having! I really hope your appointment went well and that you are feeling better now!

I have Syncope also and was diagnosed with POTS (quite a long name but it's Postural orthostatic tachycardia syndrome). It's a condition where your heart beats a lot faster than normal and reduces your blood pressure at the same time. I collapse on adverage 20-25 times a day and it's really scary especially when out in public. I have had to pack in School and am now home tutored because of it. My Doctor told me POTS can be common in Chronic Pain patients so that might be something to look into for you.

My mum and I are attending a Conference here in the UK a week on Sunday all about Syncope and POTS. All of the leading countries doctors in that area are there so it should be really informative so i'll let you know how it goes.

Best wishes,
Alison x
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Old 09-21-2010, 07:01 AM #10
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Quote:
Originally Posted by firegirl View Post
I have been having heart problems for a few years now. I have had 2 doctors tell me my problems are bc the RSD has spread to my heart. I saw a Cardiologist I used to work with today. She was really sweet & knowledgable about RSD!!! YAY!!! This was my first appt. with her today. She did an EKG & an ultrasound of my heart. I have to go tomorrow for a pulomanry function test. I also have to wear a holter monitor for 30 days. Holter monitors record your heartbeats so you know if it finds anything abnormal. It should come in the mail tomorrow of Saturday. I'm a little nervous, but just wanna know whats going on. My cardiologist said if all of this comes back normal, then it is the RSD. Even if it does show abnormalities, she still thinks RSD has spread to my heart. It is already on right side of my body & internal on my stomach. My cardiac symptoms are shortness of breath, racing heart, shallow breathing, hyperventilating, palpitations, fluttering in chest, & syncope (passing out) when these symptoms are present. I think that is it. Will let yall know how the polmonary function test goes tomorrow.

My cardiologist also believes that my heart problems (PVCs, tachycardia, and runs of SVT) are a direct result of RSD affecting my heart. He explained it all to me and I wish I could repeat it as eloquently as he does because it makes perfect sense when he says it.
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