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10/25/2010 10:37 PM

Connection Between CRPS/RSDS and PTSD(page 2)

kfwolfe
 
Posts: 13
Member

Hi Craig ...

Thanks again for your response! I understand what you are saying. Honestly, five or six years ago, I would have had difficult time hearing some of what I am saying.

First ... It does not matter if any of us had PTSD when we were injured, or if PTSD was caused at the same time as our injury. I personally think there might be a connection, but honestly, I do not know.

Either way, in both cases the autonomic system stops working properly. One side "stuck on," the other stuck in the "off" position. At minimum, during our pain cycles this is true with CRPS/RSD. As we relive the physical injury, it becomes worse with each pain cycle. Physically our skin can change, our hair stop growing, inflammation and swelling beyond anything I've seen, pain beyond imagination.

So, if my sympathetic system is stuck "on," and the symptoms of the day are pain in my gut, nausea and vomiting .... My sympathetic nerves are responding, as if I just had surgery on my stomach. The last surgery was a year ago. The bleeding has stopped. I have a scar there. But outwardly, if you are not looking, you would believe I have healed from my surgery.

The problem is my parasympathetic system has not done it's job. It should be releasing calming healing chemicals. I should be moving on ... my body should have healed by now.

The main connection to PTSD I want to point out, is not as much that I had it when I was injured, but more that if you put a description of PTSD, in the autonomic nervous system, next to a description of how CRPS/RSD is manifested in the autonomic nervous system, they would look the same ... except PTSD would be describing emotional trauma, and the CRPS/RSD would be describing physical trauma. I will work on gathering some descriptions of both, from reliable sources, and post it when I am able. This may make it easier to decipher what I am trying to say.

The effects on the entire system just get worse, for many of us. Especially over time, this disease progresses. I believe we are not truly treating it at the nervous system level. Most available treatments are postponements, such as nerve blocks, or pain medications. Few treatments, offer assistance in helping to engage the parasympathetic system. Most of the focus has been on the sympathetic system.

The two systems are intertwined. They normally work automatically. Those suffering from this disease have a system that is malfunctioning on a regular basis. Depending on the stage, and progression, some may be having failures in their entire autonomic system. I believe that is the case for me.

I believe your understanding of PTSD could be very valuable, if you can see what I am saying. My question, and next stage of this research, is how do I effect the parasympathetic system are a large level.

I know I am able to effect this many ways. There are things I can do to turn the parasympathetic system on, for short periods. For example; Dancing, playing my guitar, listening to beautiful music, writing, sharing a loving moment with a friend, or family member, and so much more. This engagement of my parasympathetic system, release amazing chemicals, that make me feel less pain. During these times, I also feel more whole, and complete, as a human being.

There was a time when I myself, would never had finished reading my original post on this subject. The moment I heard "Connection between CRPS/RSD and PTSD," I would've stopped listening. I became desperate to find a way to cope with my pain as my disease progressed. In the end, it lead me to work on my heart.

Whether any of my theories are correct, or are just wishful thinking on my part, that I can effect my situation. That I am capable of figuring out how to manage this ... The truth is ... healing my heart, will give me a better quality of life. Which I truly desire. I will look at anything, and any possibility, that I believe will not further injure me. My thinking may be a little out of the box, but if you follow, and understand my train of thought, maybe we can figure this out by helping each other, and being willing to share.

I was not always so open, and willing to discuss my own pain ... physical or emotional. This makes me very grateful to those of you who have chosen to share a little of your story, and your pain with us, to help us learn, and maybe, eventually heal. I myself am driven by this deep desire in my heart to heal, and truly experience the life before me.

I am grateful for every response to this discussion. I encourage, and ask you to continue sharing, if you are willing ... There is hope! Maybe you have a piece of the puzzle, and don't even know it. I am completely open to looking at any answers which could lead to lessening my pain, or finding remission!!

Once again, I hope your day was a good one ... your pain bearable ... and the joy, overwhelming, beyond your pain!

Much love and peace on this journey,

Kimberly

Post edited by: kfwolfe, at: 10/25/2010 11:59 PM

Post edited by: kfwolfe, at: 10/26/2010 12:16 AM

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10/26/2010 05:20 AM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
VIP Member
I'm an Advocate

Hi everyone

I agree with you Fletch. While people with RSD/CRPS can have PTSD as well, I would have to disagree with any link. For me to agree I would have to also agree that there is an emotional or mental connection with RSD/CRPS and I do not. RSD/CRPS is a physical syndrome the other 2 are not.

As I've mentioned some time back when discussing the Para Sympathetic and the Sympathetic, I do agree that if we can work on the stress aspects of our lives then our para (the calm and soothing side) and opposite the sympathetic will have a better chance at assisting.

I've also been diagnosed with PTSD.

There are already studies suggesting that people who have a pre disposition to depression, anxiety and so forth are more likely to develop RSD/CRPS. I don't agree. Again to do so, I would have to believe prior to my injury nearly 10 years ago, I also suffered from (whether diagnosed or not) depression, the belief of aches and pains without a diagnosis of any sort, anxieties, fears and so forth. Which I did not.

I only suffered from those after ward. I do not believe I was CRPS waiting to happen. Nor do I believe the masses were. I do believe there are some personalities however minute that can fit into the category of being pre disposed chronic pain.

A stress disorder can very much make a physical condition worsen and cause flare ups as well as a physical condition causing added stress. It can become a vicious cycle. That's why visual imagery, stress reducing exercises, relaxation etc are important for us.

I don't believe that those with PTSD are likely to end up with RSD or CRPS.

Warmest wishes,

~Twinkle


10/26/2010 02:38 PM
okieladybug09
okieladybug09Posts: 969
Senior Member

Just my opinion~ but I really think that R.S.D is alot like the lottery (just not in a good way obviously) you dont know who is going to get it or when... Now, if they can show me a genetic marker in my DNA that tells me that I was pre disposed to this rotten monster, then I will start thinking outside the box a little bit more.. As for right now, I really think its just bad luck that got us all here..

Gentle Hugs,

Okie~Noodles


12/09/2012 11:39 AM
10tillDawn
10tillDawn  
Posts: 36
Member

I know this post is a couple years old, but I read it anyways.

I've had RSD/CRPS for almost ten years now so I've seen most of the studies, journal reports, etc related to the findings etc.

I don't ever think about how I got the RSD with my injury from 2003. I may be misunderstanding when u say we keep "reliving" the injury and it causes the pain, but I can tell you that I never think about the injury that happened back then.

I've also read about the different studies done on both subjects and never found anyone to medically conclude that they're directly related to each other as an outcome. There are a lot of people that have PTSD and have had it for most of their lives, that have no signs of RSD/CRPS.

I can understand how if someone has both, they could possibly be affected by each other, but in very rare occasions, like no treatments for either being prescribed.

I have watched online support groups for RSD for years and seen people materialize stuff into their heads because of the amount of misinformation that's not only out there with Dr's, but in the forums which is why I never logged into them.

I know what a struggle this monster can be because I've been fighting it for so long, but I've never stayed in bed because of my pain and I always figure it could be worse than it is. I think some people just give up too soon and let it consume them completely.

It's been shown that people can get PTSD from having RSD/CRPS over a long period, but there haven't been any links in the medical community for the opposite to happen

My thoughts to you and your loved ones

Mike


12/09/2012 11:53 AM
Fletch2ya
Fletch2ya  
Posts: 3183
VIP Member
I'm an Advocate

HI... Mike.... I guess I am a little unsure of what you are saying here... but I think you are saying people don't get RSD from PTSD, But might get PTSD from RSD. Which might very well be true... I have a DX of PTSD, as I have some other issues that I am dealing with. Mostly military. But no matter how either one is not one to have.... but when combined, they are a very bad combo... The RSD triggers stress that helps to trigger the PTSD, and the stress of the PTSD helps to trigger the pain of the RSD...

I wish neither one on anyone...... But is I have mis understood you, please let me know...

Craig


12/10/2012 04:33 AM
10tillDawn
10tillDawn  
Posts: 36
Member

Hello Craig,

Your case is exactly how I was trying to explain it, in that while they are two seperate issues in their own ways, PTSD doesn't cause RSD( Not medically proven yet). I agree that they are a very bad combo to have, but I have read a lot on both and not in forums, but medical data and have not come across any links that people develop RSD because of having PTSD.

Like i said in my post above, I never think of how the piece of metal going through my hand, severing the nerves in my fingers, and being so deep that my bones were showing. The only time I ever even talk about it is when a Dr asked me what the injury was to cause the RSD.

I didn't agree with the assumption that people "relive" their trauma with RSD and make the pain worse because I've been living with it for all of these years and never think of that day. It could be me, but I have not found medical data in all these years to say that that's why my pain has been the way it is.

You said this:

The RSD triggers stress that helps to trigger the PTSD, and the stress of the PTSD helps to trigger the pain of the RSD...

This has been proven medically to be true. I do agree with this part, but not that if you have PTSD that your more likely to get RSD because it can't manifest out of thin air without something happening physically.

My thoughts to you and your loved ones

Mike

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