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.

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.

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.

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

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

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.

I think if I were in your situation, I'd take the appt. with the fellow. A fellow is a licensed anesthesiologist who is getting additional training under his/her MD. That MD who is overseeing the fellow is usually available to give opinions and to oversee the fellow. When I was hospitalized, the fellow was the most consistent MD for me and readily available for any problems.

Tos8
I think if I were you, I would take the earlier appointment whilst awaiting the later appointment with the person you would prefer to see. ultimately that way, if you aren't happy with the fellow, you have lost nothing but have at least been seen earlier. You still have the option to see the other guy in Feb.

Given what you have said, its much more likely to be your pre-existing hypertension that is the cause of your kidney issues. Your blood pressure problem from childhood is a classic cause of the kidney condition you now seem to have and much more likely to be the cause than CRPS. That's not to say that your CRPS isn't a complication in the picture or relevant to your treatment but your other medical history is a very common ans well known pre-cursor for the situation you are in now.
Best of luck with your appointments.

I honestly dont know what to do. Im exhausted! For 4yrs I fought to try and get help after a surgery went terribly wrong and I cant tell you how many drs I saw that would see me for a brief time but then drop me like a fly because they knew my surgoen and couldnt have anything to do with me. And then FINALLY after 4yrs of this nonsense i find a dr who doesnt give me the best odds, but he was willing to try and help and try and get rid of some of the pain and it was going to involve another major surgery. And then when we are trying to figure out the sympthoms ive been having besides the others that surgery could possibly fix, thats when RSD came into the picture! Yes its very commen in the surgery that butcherd me (no my surgoen did not tell me that befor surgery), but i was never dxd with it, i had the sympthoms, i knew what they were, but everybody else thought it was just from my other condition that i had the butcherd surgery for! So no i dont know what to do! I have so much going on that I dont know how to pin point 1 thing and decide to go ahead and move foward. I do know that my RSD is my top priority right now and thats what i need to focus on getting help for. But I dont know if I can keep fighting like this, fighting for the help i need and being dissopointed once again because a dr looks at me again and says "sorry i cant help you" or "wow you got delt a bad hand of cards". I have heard those statements so many times that sometimes it takes the fight out of me and I know that I have to get ready to battle once again.

I know first hand how draining it is to have to fight the medical profession once you have a diagnosis of CRPS. It's hard going and it does feel like you have been 'dealt a bad hand' sometimes.

I appreciate from what you have said that you have lots of complications and no formal diagnosis of CRPS. It's difficult because it can be very tricky to diagnose and many of the clinical signs and symptoms are found in other conditions or as a result of other injuries or problems. It's only my personal view but I do think its risky to assume that everything going wrong with your body is a consequence of the CRPS. I tend to do the opposite and assume its nothing to do with my CRPS until I can try to have any other cause ruled out. It isn't always easy or possible but I figure that way I'm not leaving potentially serious thing un-investigated.

The hypertension you have had since you are a toddler is a well known and common cause of vascular kidney problems later on. These vascular problems are not the same as the vascular problems that can be caused by CRPS or malfunctioning of the autonomic nervous system. Hypertension (high blood pressure) is a leading cause of the vascular damage which leads to kidney disease and kidney failure. That is why this risk was identified early on in your childhood when your hypertension was identified.

Please go and get your kidney problems properly checked out. For the reasons I've mentioned it's highly unlikely that this has anything to do with CRPS and as I'm sure you will appreciate, end stage kidney failure means a person needs dialysis or transplant. I know you are tired and fed up with your treatment but you need to have this checked out.

Yes my former nephroligist told me once I was in my early teens and then kept reminding me that it was a high chance that eventually i would most likely need a kidney transplant due to having hypertention my whole entire life and because my kidneys produce renin all the time which of course they should never do. So I need to see a new neuro, a new nephroligist and a new PM. The new year is gonna be great! My neuro did think that the vascular issues are all linked to each other in some way but didnt know how.

"My neuro did think that the vascular issues are all linked to each other in some way but didnt know how."

That doesn't inspire much confidence does it?!! Maybe he should leave the real medicine to someone who knows one end of the human body from the other!!!

Exactly! And I didnt know any of this about kidneys until I recieved my medical notes saying that an MRA was recomended stating that "evidence of vascular desease is present in kidneys and could all possibly be linked". And the only way he could have known somthing was up with my kidneys was by blood work I had done and he did not mention anything other then I needed to go see a dr, and to tell me to just go see a dr without a reason, well then im not gonna make the appt. So I do have all my appts scejuled now with all 3new drs in Feb. I know its gonna be alot of testing going on so I will need to be ready. I actually fear the PM dr more then the others. I trust the other 2 can manage those 2 conditions, But I dont trust the PM dr to help with the RSD.

Well, I just hope that they are able to help with your longstanding high blood pressure and kidney disease issues before those become too serious. That seems to be the real priority for you at the minute given the potential prognosis if it isn't managed. The CRPS and other problems might be difficult but they pale into insignificance if you are faced with failure of these two rather critical organs.

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

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

rsd and internal organs
 

Hi tos8, sorry you are having kidney problems. RSD is an autonomic condition, which means our sympathetic and para sympathetic nervous systems do not regulate our blood pressure, body temperature, heart rate etc. properly. If you look up autonomic condition, sympathetic nervous system, and para sympathetic nervous systems, on the internet, it explains their roles in our body. RSD is a disregulation of these systems.. If you look up rsdrx.com and go to puzzles 1-146 Dr. Hooshmand explains under puzzle 34 that rsd does affect our internal organs. Because rsd causes both high and low blood pressure, the high blood pressure can damage the kidneys.
The low blood pressure can cause us to pass out. The vegas nerve causes our heart rate to drop and pass out. Vegas nerve is pare of the autonomic nervous system. My dr. just called to tell me I have blood in urine so will get follow up testing. Hope this helps. RSD is an inflammatory disorder so can damage the internal organs like kidneys, heart, with inflammation. Hope this helps a little. I've had RSD since about 1996 following surgery. full body. Take care and let us know how you are doing please. your friend, loretta

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:)

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:)

Hi TOS8,

boy your rant about the "surgery that butchered" you really made me sad. You are too young to be suffering with this! I know what you have had because I had that same surgery.

With regard to your question about what caused your kidney vascular change, I am going to agree with Neurochic and vote for the Hypertension.

There are so many people struggling with many medically complex illnesses on these forums and they have done alot of research and some of them are medical professionals themselves so there is alot of great advice on here and alot of people that want to help I have found. However, there are also regional differences and Medicine is also an Art, so not all doctors practice medicine the same way, and certain states have different rules for Pain Medication prescribing, etc., so not all Advice applies.

Hi tos8, I have been researching kidneys and internal involvement since they foung blood in my urine 3 weeks ago. I've had rsd 16 years -full body.
Also high blood pressure the last 10 years. under rsdrx.com puzzles list- Dr. Hooshmand-rsd specialist in Florida, now retired talks about internal organs on puzzle #34 and discuses kidney involvement. So I'm going in for furthers tests tomorrow and check it out. Hope all goes well with you. loretta