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-   -   CRPS study-cause may not by trauma but autoantibodies (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/207448-crps-study-cause-trauma-autoantibodies.html)

Burnbabyburn 07-28-2014 07:48 PM

CRPS study-cause may not by trauma but autoantibodies
 
Hi all

Hope everyone is doing as ok as they can be. Someone just sent me this article. I found it interesting. I have mixed thoughts as I have often thought RSD might be an autoimmune disorder, among other things BUT.....

My RSD occurs immediately after surgery, I mean immediately as far as I can tell. Within 24/48 hrs. Also, RSD has never occurred for me after a fall, and I have had many many of them, or a general injury etc. Only surgical intervention or, one time, a flair from an injection.

So, the question is: if you take an autoimmune approach, why would surgery, cutting, invasion bring this out, but other things don't? Many of us get or got RSD from surgery. Do you think the body just can't handle any intrusion? Is it the weakened system they are assuming is the cause? In that case, why wouldn't a fall, or a bad cold, or pneumonia for example have some effect and cause RSD? I am only talking about people who get RSD from surgery and no other cause that they know of.....

Curious as to other people's thoughts. AND for the 1st time in my life, I feel really badly for mice, rather than just being afraid of them...(see article). I hate to think of anything (mice or other) being injected with things that cause RSD like symptoms. Sad. It's for science, and us, medicine, I know but it makes me sad. LOL

http://www.hcplive.com/articles/Comp...used-by-Trauma

Adalaide 07-28-2014 09:51 PM

The research is encouraging and hopefully will lead to more effective treatments. I think hope of a cure is a little far fetched right now, since at this point many research teams have been spending years looking into cures for autoimmune diseases with very little progress. On the other hand, once the first team cracks it for the disease they're working on it will be so much easier for the rest. But it can certainly get us better understanding and better relief while we wait for that time and that is very hopeful. :)

For me this didn't start with surgery, but with repeated trauma to the same area over and over and over... until this happened. It was a fall, but a fall that left me with a sprained ankle and in need of crutches and kept happening every 2-3 months, and this after a severe nerve injury to that leg several years prior. I'm not sure that qualifies as just a fall at that point. I did get a really bad flare with an injection though, which is the last time I'll ever let someone do a neck-stabbing to try to relieve my pain. The pain was worse for several days than it had ever been before.

I still don't feel sorry for mice. Maybe that makes me a horrible person but I grew up on a farm and they were a serious nuisance. We also had one in our house a few months ago that led to some chair standing, some screaming, and some being poked fun of by my husband. I don't like the things.

Burnbabyburn 07-28-2014 10:28 PM

Hi

LOL re mice. HUGE fear of mine too. When I read the article and thought about a swollen paw and temperature change, I felt bad for the little things. LOL. If one was in my house, as they have been before, I totally freak. I leave actually. HA HA.

Thanks for your thoughts and reply. I feel like for some of us, with additional diseases and issues (celiac, fibro etc) that this autoimmune part might be pretty significant to RSD. I do agree with you your research thoughts, really all of them!! Sorry about your repeated trauma, injury that led to this. I never had any luck with nerve blocks either so far. I know some have good success. I think the "operator" so to speak may have a lot to do with it, the doc needs to be skilled. But it seems some people just take to them better than others. The neck stabbing, yes, scary. LOL. Been there, hated that. :p

I can top that. 20 some years ago before they knew much of anything about RSD, I went to a TOP HOSPITAL that did nerve blocks on me. Only issue is - with raging RSD, they did the blocks, 3 of them....directly into my RSD affected area. It was the most traumatic event I have ever had probably. My leg blew up like twice the size, blood spurting out, pain worse than anything I can comprehend. AND having to go back and do it again - major trauma and drama. It still haunts me. Anyway, here is to hopeful treatments, good research and less pain for us all.

Thanks again for your input


Quote:

Originally Posted by Adalaide (Post 1085669)
The research is encouraging and hopefully will lead to more effective treatments. I think hope of a cure is a little far fetched right now, since at this point many research teams have been spending years looking into cures for autoimmune diseases with very little progress. On the other hand, once the first team cracks it for the disease they're working on it will be so much easier for the rest. But it can certainly get us better understanding and better relief while we wait for that time and that is very hopeful. :)

For me this didn't start with surgery, but with repeated trauma to the same area over and over and over... until this happened. It was a fall, but a fall that left me with a sprained ankle and in need of crutches and kept happening every 2-3 months, and this after a severe nerve injury to that leg several years prior. I'm not sure that qualifies as just a fall at that point. I did get a really bad flare with an injection though, which is the last time I'll ever let someone do a neck-stabbing to try to relieve my pain. The pain was worse for several days than it had ever been before.

I still don't feel sorry for mice. Maybe that makes me a horrible person but I grew up on a farm and they were a serious nuisance. We also had one in our house a few months ago that led to some chair standing, some screaming, and some being poked fun of by my husband. I don't like the things.


Adalaide 07-29-2014 01:37 AM

Were you awake for that? That sounds AWFUL! :hug: The doc asked me if I wanted to be sedated right after explaining that they use an ultrasound so they don't accidentally stab you in the jugular vein. :eek: For the love of God yes. YES!

visioniosiv 07-29-2014 09:19 AM

Quote:

Originally Posted by Burnbabyburn (Post 1085637)
Hi all

Hope everyone is doing as ok as they can be. Someone just sent me this article. I found it interesting. I have mixed thoughts as I have often thought RSD might be an autoimmune disorder, among other things BUT.....

My RSD occurs immediately after surgery, I mean immediately as far as I can tell. Within 24/48 hrs. Also, RSD has never occurred for me after a fall, and I have had many many of them, or a general injury etc. Only surgical intervention or, one time, a flair from an injection.

So, the question is: if you take an autoimmune approach, why would surgery, cutting, invasion bring this out, but other things don't? Many of us get or got RSD from surgery. Do you think the body just can't handle any intrusion? Is it the weakened system they are assuming is the cause? In that case, why wouldn't a fall, or a bad cold, or pneumonia for example have some effect and cause RSD? I am only talking about people who get RSD from surgery and no other cause that they know of.....

Curious as to other people's thoughts. AND for the 1st time in my life, I feel really badly for mice, rather than just being afraid of them...(see article). I hate to think of anything (mice or other) being injected with things that cause RSD like symptoms. Sad. It's for science, and us, medicine, I know but it makes me sad. LOL

http://www.hcplive.com/articles/Comp...used-by-Trauma

Hi B3 great article and I agree with its general premise. Thanks for posting this.

I am like you in that surgery is the only trigger I've experienced that results in RSD. The nervous system goes bonkers as a RESULT of autoimmune dysfunction. The question is: what's causing the dysfunction? That will be different for everyone but there are many many commonalities - we're all human right??

There are a couple reasons I see that surgery would be more of a trigger. 1) the specific nature of that trauma is invasive. Several levels of "cutting" - through skin, capillaries, nerve pathways, etc. 2) surgery is a result of a problem that ALREADY exists at that particular site, or else we would not be having it. 3) immobility of the site after surgery. 4) modern protocols such as icing that retard the healing process rather than assist it. 5) mental states of increased stress prior to and after the surgery. 6) surgical trauma results in mass production of free radicals flowing directly to the site as well as circulating body-wide. If the immune system is already overstressed, these cannot be neutralized.

There are more but those are the basics as I see it.

For those that experience RSD from other triggers, I would say that much depends on the vitality of the immune system as a whole. As we know, RSD "builds on itself" by the compounding nature of its symptoms. As you guys have stated, there are lots of connections between RSD and many other conditions.


And I agree - Torturing other living creatures in an effort to find a cure for ourselves does not help the overall state of the human race:(

eevo61 07-30-2014 08:07 PM

Recently get an update from rsdsa.org saying ,rsd is actually cause by autoimmune system attacking the body ,seriously ? I was so confused because pointed also is not cause by a trauma , I got injure and after came my rsd due to injury know means we all suffer from autoimmune system attacking us ,I really don't know why dr are wasting money on doing researches and not really working to find a way to treat rsd properly.
:grouphug: Jesika .gentle hugs

visioniosiv 07-31-2014 10:30 AM

Yikes!
 
Quote:

Originally Posted by eevo61 (Post 1086108)
Recently get an update from rsdsa.org saying ,rsd is actually cause by autoimmune system attacking the body ,seriously ? I was so confused because pointed also is not cause by a trauma , I got injure and after came my rsd due to injury know means we all suffer from autoimmune system attacking us ,I really don't know why dr are wasting money on doing researches and not really working to find a way to treat rsd properly.
:grouphug: Jesika .gentle hugs

Yikes!

I don't believe the immune system is attacking the body; I think it's doing the best it can to help with what it's got left! I think excess oxygen free radicals are the cause - and as a result, the immune system calls in the cavalry 24/7. This means constant inflammation. After a while the immune system is totally exhausted, hypoxia sets in, capillaries and nerves are compressed from the constant inflammation (HERE COME THE PAIN SIGNALS:(), and the body splints itself the best it can to survive. There are too many oxygen free radicals for the immune system to handle, so it "quarantines" affected limbs and areas in an effort to mitigate the damage locally.

If it can't, physical spread occurs via a combination of the existing overflow of free radical circulation in the bloodstream, in addition to NEW free radicals generated from a NEW trauma site. That's why any new trauma can trigger spread -- It ain't via the sympathetic nervous system. The nervous system goes haywire as a RESULT of the inflammation caused by free radicals, not the other way around. Neither the immune system nor the central nervous system are "attacking" us. It just looks that way symptomatically.

So what the heck causes free radicals? They're caused by physical, mental, and spiritual stresses. ie diet, environment (including genetics so some of us are obviously predisposed:(), thoughts, emotions, and beliefs. Science has already proven the physical and mental connection to stress and disease. As to what the heck spiritual stress even is, that's totally individual and I'll leave that one out in the context of this forum.

Again, what do I know:( Just one person's beliefs based on my own experiences.

PS FREE RADICAL - just wanted to say it one more time:)

Burnbabyburn 07-31-2014 04:57 PM

Beyond awake. It was a mistake to do it into the RSD itself. I seriously still do get flashbacks if I am forced to talk about "if I ever had blocks and were they successful." question that comes up. LOL. For the LOVE OF GOD...not so much. :-). The ones I had in my neck were less dramatic but still pretty un fun. :o

I had one injection from a great doc but it was not a nerve block, it was done under anesthesia and he used xray etc to get it right.

RSD is so much fun hah?
;)
Quote:

Originally Posted by Adalaide (Post 1085704)
Were you awake for that? That sounds AWFUL! :hug: The doc asked me if I wanted to be sedated right after explaining that they use an ultrasound so they don't accidentally stab you in the jugular vein. :eek: For the love of God yes. YES!


Burnbabyburn 07-31-2014 05:00 PM

Vision

Thank you x 10. This was so well written and gave me a lot of food for thought. I appreciate everything you said and sharing your thoughts with the group. This is how we learn!!!!

Sorry about your RSD of course, (gentle hugs) as I am sorry about everyone who has to live with the monster.

Such a really good reply and useful post, thanks again!!!
B3
Quote:

Originally Posted by visioniosiv (Post 1085747)
Hi B3 great article and I agree with its general premise. Thanks for posting this.

I am like you in that surgery is the only trigger I've experienced that results in RSD. The nervous system goes bonkers as a RESULT of autoimmune dysfunction. The question is: what's causing the dysfunction? That will be different for everyone but there are many many commonalities - we're all human right??

There are a couple reasons I see that surgery would be more of a trigger. 1) the specific nature of that trauma is invasive. Several levels of "cutting" - through skin, capillaries, nerve pathways, etc. 2) surgery is a result of a problem that ALREADY exists at that particular site, or else we would not be having it. 3) immobility of the site after surgery. 4) modern protocols such as icing that retard the healing process rather than assist it. 5) mental states of increased stress prior to and after the surgery. 6) surgical trauma results in mass production of free radicals flowing directly to the site as well as circulating body-wide. If the immune system is already overstressed, these cannot be neutralized.

There are more but those are the basics as I see it.

For those that experience RSD from other triggers, I would say that much depends on the vitality of the immune system as a whole. As we know, RSD "builds on itself" by the compounding nature of its symptoms. As you guys have stated, there are lots of connections between RSD and many other conditions.


And I agree - Torturing other living creatures in an effort to find a cure for ourselves does not help the overall state of the human race:(


eevo61 07-31-2014 08:47 PM

No wonder now my new ortho dr said I don't have RSD after all :mad: , I'm really so mad and also so confuse ,my case will go to trial soon and now RSD is autoimmune that won't help me at all, but yes understand how its works now I have to convince my ignorant dr that all the surgeries I had were really necessary and RDS is in fact real.:confused:


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