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 12-14-2012, 02:04 AM #1
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Default Internal RSD??

Ok we just got a report from my neuro that my old neuro wanted me to see a nephroligist because he thinks theres evidence of vasculaler kidney problems. Now heres where it gets complicated, I have had hypertention since i was a toddler. So yes theres always been that thing as to where at some point in time i could develope problems with my kidneys. However this is maybe vascular issues. So does anybody have any issues with RSD attacking there kidneys? Because its only gonna be narrowowed down to 2 things. RSD or hypertention. And im leaning towards RSD. So can anybody help me out?? Exspecially since I see my new PM next week and he has no idea how to manage RSD.
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Old 12-14-2012, 11:56 AM #2
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I have never heard of rsd attacking organs. But since having it, I have been experiencing hypertension, or pre. And when you go to your pain doctor, he should be the one to manage your rsd. If he or he is worth their salt, they will have a plan for you.
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Old 12-14-2012, 05:10 PM #3
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I'm newly diagnosed with CRPS, so I don't have any experience with it. But a good friend of mine has it in her legs and it went internal and affected her bowels and bladder.///so I guess for it to go inter it could happen. I think its a little more rare though.
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Old 12-16-2012, 11:29 PM #4
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Hi.. as far as RSD and kidneys.. the drugs can also affect your organs. making the issue RSD related or casually related. but I have heard of organ RSD. in fact the true meaning of full body RSD is just that .. the whole body. organs included. Check the side affects on your drugs. keep track of all new symptoms. (pain diary) I hope this helps a little
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Old 12-17-2012, 01:23 AM #5
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Default CRPS/RSD and Internal Organs

Hi tos8,

Couple of things caught my attention right away.

1) "My new PM doesn't know anything about CRPS/RSD" - HUH? How can he/she help you out? You need to arm yourself with information and find someone who is knowledgeable about this condition because it can do some pretty weird stuff. (I apologize if this is coming on too strong)

2) Can CRPS affect internal organs? Definitive answer is "yes. Please see link from Dr. S. :

"The sympathetic nervous system supplies all of the body structures — including muscle, tendon, ligament, dura, disk, synovium, bone, and even the internal organs."
Source: http://robertgschwartz.homestead.com/page2.html

3) At the same time, in terms of a "spread" of RSD to a new site Dr. S indicates that caution should be used, as the damage caused by RSD/CRPS may reveal the previously hidden condition:

"New symptoms in different body parts should not be assumed to either represent spread, be totally unrelated, or psychosomatic; an aggressive and objective assessment of the situation, without prejudice one way or the other, should occur. While a significant minority of RSD patients can be proven to have bona fide spread of their dystrophy most often, new complaints represent co-morbid medical disease."

Source: http://robertgschwartz.homestead.com/rsdandspread.html

4) This last site is a little dated as the physician is retired, but I frequently refer to Dr. H's page when I am doing research. Here is what he has to say about the kidneys and CRPS:

"The next structures being involved (***after visceral ***) in some cases of CRPS are the blood vessels to the kidney with resultant episodes of sudden brief and temporary bleeding through the kidney accompanied by a marked elevation of blood pressure. The same principle can cause attacks of nose bleeds, severe headache, dizziness, passing out spells as well.

Application of Clonodine Patch in the area of the kidney in the flank (in the back) usually results in good relief of such spasm and inflammation of the blood vessels. The patient should be treated with Dibenzyline or Hytrin which are life saving in such patients."

Note: these comments are found on page 2 of the document at:
Source: https://docs.google.com/viewer?a=v&q...GpAgWUT0rQiwdw

5) The connection between the vascular system and the sympathetic system cannot be overlooked. I hope you can find a physician(s) who can work alone or together and who understands crps and how the sympathetic nerves affect the body. After all, it has been demonstrated via functional MRI's that our our brains and spinal cords are all physically altered due to this condition. As a result, they send altered messages to many areas of the body. Such discordant signalling may be a contributing factor to the re-appearance of your hypertension and kidney problems.

Hopefully you can find a physician who can treat you as a whole body, not separate parts.

Please let us know how it goes - wishing you the best. I hope these links will empower you with a little more knowledge when you go to see your doctors.

Aloha,
Jenny
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Old 12-19-2012, 09:36 AM #6
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Unfortantly I cant get to anybody that can actually help me at this point in time. I had to cx my appt yesterday and I dont have another appt until feb. I did let the reseptionist know I have RSD and I really need to get into see him because she said i could see the fellow but im not going to see the fellow when most drs dont know anything about RSD and so she was gonna ask if he could double book me in somewhere so i can get in sooner. Im tired and i need to see somebody soon. As for the kidney issues, i have so many other health problems ill never be able to pinpoint which is what.


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Originally Posted by jpcrps View Post
Hi tos8,

Couple of things caught my attention right away.

1) "My new PM doesn't know anything about CRPS/RSD" - HUH? How can he/she help you out? You need to arm yourself with information and find someone who is knowledgeable about this condition because it can do some pretty weird stuff. (I apologize if this is coming on too strong)

2) Can CRPS affect internal organs? Definitive answer is "yes. Please see link from Dr. S. :

"The sympathetic nervous system supplies all of the body structures — including muscle, tendon, ligament, dura, disk, synovium, bone, and even the internal organs."
Source: http://robertgschwartz.homestead.com/page2.html

3) At the same time, in terms of a "spread" of RSD to a new site Dr. S indicates that caution should be used, as the damage caused by RSD/CRPS may reveal the previously hidden condition:

"New symptoms in different body parts should not be assumed to either represent spread, be totally unrelated, or psychosomatic; an aggressive and objective assessment of the situation, without prejudice one way or the other, should occur. While a significant minority of RSD patients can be proven to have bona fide spread of their dystrophy most often, new complaints represent co-morbid medical disease."

Source: http://robertgschwartz.homestead.com/rsdandspread.html

4) This last site is a little dated as the physician is retired, but I frequently refer to Dr. H's page when I am doing research. Here is what he has to say about the kidneys and CRPS:

"The next structures being involved (***after visceral ***) in some cases of CRPS are the blood vessels to the kidney with resultant episodes of sudden brief and temporary bleeding through the kidney accompanied by a marked elevation of blood pressure. The same principle can cause attacks of nose bleeds, severe headache, dizziness, passing out spells as well.

Application of Clonodine Patch in the area of the kidney in the flank (in the back) usually results in good relief of such spasm and inflammation of the blood vessels. The patient should be treated with Dibenzyline or Hytrin which are life saving in such patients."

Note: these comments are found on page 2 of the document at:
Source: https://docs.google.com/viewer?a=v&q...GpAgWUT0rQiwdw

5) The connection between the vascular system and the sympathetic system cannot be overlooked. I hope you can find a physician(s) who can work alone or together and who understands crps and how the sympathetic nerves affect the body. After all, it has been demonstrated via functional MRI's that our our brains and spinal cords are all physically altered due to this condition. As a result, they send altered messages to many areas of the body. Such discordant signalling may be a contributing factor to the re-appearance of your hypertension and kidney problems.

Hopefully you can find a physician who can treat you as a whole body, not separate parts.

Please let us know how it goes - wishing you the best. I hope these links will empower you with a little more knowledge when you go to see your doctors.

Aloha,
Jenny
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Old 12-25-2012, 05:54 PM #7
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I know that a patient at my pain centre has RSD in his/her bladder. I have never met him/her and only know by what my doc and nurses have told me.

I have RSD in my vulva/vagina , which is why I know about the aforementioned patient. My specialists were explaining the ways RSD can attack internal organs.

(My RSD started in my right foot in 2007 btw: remained static until 2011, then rapidly spread throughout entire lower body to hip areas. )

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Old 12-25-2012, 07:14 PM #8
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Dear Alice - I have RSD in all four limbs - systemic. I am due to have a D and C in Jan and my PM doc says you cannot get RSD spread in the female organs ... hence not to be concerned about the D and C. Any advice?\thanks
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Old 12-25-2012, 08:00 PM #9
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Quote:
Originally Posted by sallysue View Post
Dear Alice - I have RSD in all four limbs - systemic. I am due to have a D and C in Jan and my PM doc says you cannot get RSD spread in the female organs ... hence not to be concerned about the D and C. Any advice?\thanks
I sally sue, sorry to hear of your full body rsd. I have full body too, since 1996.Please research rsd and the d&C procedure fully. www.rsdrx.com has some information about rsd and internal organ involvement. puzzles 1-146 has information under puzzle #34 and #127. You might look up the info on 127 and research it. I've had a d&c years ago, but before rsd. Dr. Hooshmands website is still up, but I believe he retired. That question-127 mentioned interstitial cystitis
I have looked it up, but will do some research on it myself. Hope this helps. I know I'm scared to death to even go to the dentist for fear of getting rsd in my mouth. I take an antibiotic before any procedure, and 'laughing gas' to relax/ Others have said we can get rsd in our mouth. Hope this helps- your friend, loretta
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Old 12-27-2012, 05:51 PM #10
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Quote:
Originally Posted by whereisfunkytown View Post
I know that a patient at my pain centre has RSD in his/her bladder. I have never met him/her and only know by what my doc and nurses have told me.

I have RSD in my vulva/vagina , which is why I know about the aforementioned patient. My specialists were explaining the ways RSD can attack internal organs.

(My RSD started in my right foot in 2007 btw: remained static until 2011, then rapidly spread throughout entire lower body to hip areas. )

Alice
Hi Alice, sorry about your spread and internal organs. I mentioned www.rsdrx.com then go to puzzles #34 and #127 have information on spread to internal organs including vulvodynia.
I've had RSD for 16 years now and just found out I have blood in urine so now checking out more tests to find out whats going on.
What is the plan for your internal involvement? Is there any treatment?
Hope you did some effective treatment. Your friend, loretta
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