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Smokie
Regular Member


Date Joined Oct 2008
Total Posts : 46
   Posted 10/14/2008 5:17 AM (GMT -7)   
Hello,
I am fairly new to this site, although I have several replies on the Prostate Cancer section. However, I also have a question about rsd. I broke my wrist about 5 months ago, and it has been slow healing. I have been diagnosed with rsd by the Ortho dr, the pain dr, and the neurologist (I've been through bone scans, ct scans, etc...). I do have swelling and color/temperature differences, but no chronic pain. The only pain I have is from the tightness in my arm and hand.
Am I lucky that I have no rsd pain, or is there still a chance that the pain will come later? Is there anything that I should be doing now? The pain management doc wants to put me on pain meds, but this seems crazy since I don't hurt.
I would appreciate any advice.
Smokie

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 10/14/2008 6:19 AM (GMT -7)   
Smokie,

I'm so glad to see that you posted in chronic pain and welcome. As for rsd, I know little about it, but I sure as heck wouldn't take pain meds if I wasn't hurting. I don't see the sense in that, but maybe I am missing something, as I am not a doctor.

Anyway, I'm sure others will be along to offer their advice, just wanted to say hi and welcome.

God's blessings...

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 10/14/2008 9:29 AM (GMT -7)   
I have had RSD....I can agree that taking pain meds doesn't really seem prudent if you aren't having pain, but there are some meds that seem to help with the nerve pain, shocks, temperature regulation that help, so that may be what they are talking about....
Ask them specifically what they are for and they should explain them to you.
I'm sorry that you are dealing with RSD.
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 10/14/2008 10:31 AM (GMT -7)   
If at any time you do not understand why your DR. dos something,or wants you to do something and you dont understand why ask.Some DR. might get irretated but tough luck.Not enuff people ask enuff questions,Thay dont even have to be real inportant questions just something you would like to know.Its your body its your right to find out what you want to know. yeah yeah yeah
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/14/2008 10:46 AM (GMT -7)   
Smokie,
I know you've had all the tests and such, but I personally have never heard of someone with RSD without pain. But I'm not a doctor or an expert. I do know that the name has been changed to Chronic Regional Pain Syndrome (CRPS), which in itself implies pain being one of the main features. Are you sure these doctors are experts with RSD/ CRPS? Because I know it's difficult to diagnose. I wonder if anything you're experiencing could have other causes - such as circulatory issues. Has anything vascular been completely ruled out? And I certainly wouldn't want to take pain medication if i didn't have pain. Usually doctors are so reluctant to prescribe these even to those of us who report significant pain. So I'm a bit puzzled, too. I'd be asking a lot of questions - would there be other reasons for them to prescribe the medications (and what are they prescribing?). Are they trying to prevent something from worsening?

I don't blame you for being hesitant. I would be, too.

Let us know what happens.

PaLady

Smokie
Regular Member


Date Joined Oct 2008
Total Posts : 46
   Posted 10/14/2008 12:03 PM (GMT -7)   
Thank you all for the replies.
PaLady: I also questioned the pain issue. I have, of course, done research on rsd and have read the stories of the pain associated with rsd. I sympathize with anyone dealing with this. The dr.'s I mentioned all told me that while somewhat rare, painless rsd does exist. Apparently, the same nerve malfunction that causes the swelling and color changes is similar to the malfunction that causes pain. I'm told that I am fortunate that the pain nerves are not, for whatever reason, firing. However, they don't know if I will eventually be in pain, get better, or stay the same. (I'm not totally sold yet. The older I get, the more skeptical I become with the medical profession.) Nor do I know if the dr.'s I'm seeing are experienced with rsd.
I dropped the pain management dr. when he suggested pain meds. The reason he suggested pain meds was because that's what they usually do for rsd patients! That is why I'm now seeing a neurologist.
I'm wondering if anyone out there with rsd had delayed pain reaction. After reading about rsd, I'm concerned that my painless rsd may eventually become outright rsd. If so, is there anything I can do to help prevent this from occuring?
One other thing worth mentioning. I have began having what I assume are migraine headaches. I'm 43 and never had one till a few weeks ago. They are severe headaches, usually followed by naseau (forgive the spelling). Ever heard of a link with rsd and headaches?
Once again, thank you all for your replies. I truly feel for those of you with chronic pain. I wish I could say or do something to help.
Smokie
Age: 43
Diagnosed at 41 by routine blood test
PSA at diagnosis: 5.1
Pre-op Gleason: 3+4=7
Post-op Gleason: 6 (different labs?)
No luck finding local experience with DaVinci
Scheduled RP at Vanderbilt: 8/06
Insurance trouble, rescheduled at Centennial Hospital, Nashville
Prostate removed 9/06
Robotic, nerves spared, no positive margins
PSA since RP: good (less than .05)
Currently suffer ED
 
 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/14/2008 12:17 PM (GMT -7)   
Smokie,
If i were you I'd try to get to someone who specializes in RSD/CRPS for a consultation. That may mean traveling, perhaps to a teaching hospital that might be in your region, although what you want is an RSD specialist. What I know from having chronic nerve pain is that time does matter. And the fact that your sensory nerves aren't affected right now may not mean that continues. So I think you ask some pertinent questions about whether there's something you can do to prevent worsening. Since the PM was ready to just prescribe pain meds for no good reason, it doens't sound like he's an expert in any of this.

Keep doing your research. And maybe someone on here with more knowledge of CRPS can add some feedback, but we aren't doctors. I'd be looking for a specialist.

And as to whether the migraines could be related, I don't know, but I don't think it's impossible as the nerves in the wrist/arm are connected to the spine at the neck.

PaLady

crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 10/15/2008 12:07 AM (GMT -7)   

:-)  ello H.W.

   Hello Smokie,

  I have had CRPS going on 4 years now, and unfortunatly I have the absolute unbearable pain kind......... I just whant to say I have never heard of painless crps???? But just like everyone else here, I am certinatly not a doctor, but sometimes being a patient is almost as good for results and trial of some importance.

  Your doctor may have meant different kinds of pain meds. Some that are considered pain meds are not the usuall percocett,dillaudid,hydromorphone in different breakdowns or even oxycontin or pain patches, there are a million types of actual pain meds to try at the right time. You obviously are not there yet or never will be? Who knows. But the point I want to make is that there are nuerological pain meds out there that do not work like quick fixes I have mentioned here. Like the lyrica, many people that have some kind of  nuerological problem 90% of then are taking lyrica because it is a long term medication that is sopposed to work over time. Another is cymbalta which is advertised as an anti-depressent, but I talked to my pain mngmt and cymbalta is given out over 80% of the time to help with nuerological patients.(besides there are so many deppresent meds out there they have a long choice). Those are just two examples of pain meds listed undr pain medication.

  Anyway smokie Like the posts before me, It would be a huge advantage to get yourself a good crps doctor, they definatly make a difference. These thoughts just come from some experience that I like to throw out there sometimes when inquired about

                         Hope Everone Has A Pain Free Day!!!

                                              Kind Regards        :-)  

                                                   Mike

(P.S. I really sure could go for a smokie now and then!!!  Urinary tests are good and bad!!)         blush


Smokie
Regular Member


Date Joined Oct 2008
Total Posts : 46
   Posted 10/15/2008 5:46 AM (GMT -7)   
Mike,
Thanks for the info. I'm actually still going through some test with the neurologist (my final test, emg, is today). It may seem premature to being asking questions of you guys while all this is still going on, its just that the wheels are turning too #!*# slow! I've been working on this for five months now. Everything I read about rsd indicates that early treatment is critical.
I don't know if it even is rsd. I was convinced otherwise until I read the bone scan results. It talked about blood pools and delayed reactions, which I don't yet understand, but the bottom line opinion was rsd.
So I guess I'll continue biding my time and pushing the Doc for info. In the meantime, thanks to all who replied for your input.
 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/15/2008 9:13 AM (GMT -7)   
Smokie,
Let us know how your emg goes. I've had them, and know they're not "comfortable" to say the least, but it should at least tell you if there's some nerve damage. Blood pooling? Still sounds like maybe something vascular but then I'm not a doc.

You're right about early treatment when it comes to nerves. I found that out the hard way waiting too long for back surgery.

Good luck!

PaLady
BTW, don't worry about asking questions of us. It's not premature. We may not be doctors, but we can offer support at any point in the process. And sometimes the experiences we've had help others. This is a great group of people.

Post Edited (PAlady) : 10/15/2008 10:29:36 AM (GMT-6)


2244CRPS
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/16/2010 11:02 PM (GMT -7)   
I am looking for a more recent CRPS post. I am very happy this isn't common but, I am feeling alone in this disorder. Is anyone out there??????????

2244CRPS
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/17/2010 2:03 PM (GMT -7)   
Smokie,

I hope your doctors are wrong! And that you don't have CRPS. CRPS changes and often spreads. The pain can increse. I also started with a dislocated R wrist fracture that needed surgery and didn't get it. My CRPS has escalated. Meds and nerve blocks didn't work for me. The SCS trial surgery helped I am waiting on the permanent proceedure. Has anyone with CRPS done the permanent SCS surgery? How has it turned out?

BobinmidMO
Regular Member


Date Joined Mar 2010
Total Posts : 39
   Posted 3/28/2010 10:34 AM (GMT -7)   
Hi,
 
Will RSD cause you pain in the future?  RSD is now called Complex Regional Pain Syndrome because that's always part of it, but so far you've been lucky, so I ask why worry about a problem that's not there?  Instead please just get some really good therapy going so your hand won't freeze up and so you can get back more of your strength.  The less you use your hand, the less it will let you use it.  Freezing up of a body part is common with RSD and can take months to undo, and can in some cases never be fully fixed so you need to take care of it today.
 
RSD is funny in that the care you get during the first 12 months is the most important you'll ever get.  If you get exactly what you need right off the bat, your future looks bright, but if you don't get the right care now, you could have some hard days ahead.  Listen, learn and put up with whatever the doctors tell you so long as you feel good about trusting him or her.  If you're in doubt, then please look around and find some other doctor you can trust.
 
Your posting makes it sound like you're in phase I, and 90% never get any worse so that's something to be thankful for.  Of the 10% who go into phase II, only 10% of those will see phase III.  If you're ever unlucky enough to land there, sit down and have a good cry and then figure out how you're going to live the rest of your life with a new set of rules.  You're going to do just fine with your attitude, so don't buy problems you don't need to.  With today's inflation, there's enough to worry about already.  Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time. In 2004 I got an Intrathecal morphine pump &5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time. 1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.  A year ago my left leg was ampuated above the knee after ging septic.  Guess that about say's it all.  Bob.

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