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

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.

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

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!

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:(

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!
 

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:)

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?
;)

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

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:

Eevo61, nothing has actually changed as far as medical science's understanding of CRPS is concerned so this shouldn't be a concern for your upcoming trial. The recent published research relating to the mice which was reported in the linked article (and in lots of other places) is another interesting piece of research but it doesn't change the basic fact that medical science still doesn't know what the cause of CRPS is. It is essential that scientists and researchers spend money on trying to understand the cause of CRPS because unless they understand the causal mechanisms, there is no possibility of finding a way to cure the condition. Without understanding the precise mechanisms that cause a disease, the best that medical science can ever do is to treat the symptoms. In fact, for the vast majority of medical conditions, all that medicine does is treat the symptoms to provide relief.

There are many hypotheses about what causes CRPS. The idea that it is an autoimmune condition is not a new idea, nor has it ever been proven to be the correct answer. Other scientists and medics have quite different opinions about the cause. To further complicate things, many of the leading researchers and clinicians believe that CRPS may well turn out to be multiple, different conditions and not a single one.

In other conditions which have been proven to be autoimmune diseases, physical trauma is a well known trigger for these autoimmune diseases to start. It is not understood why trauma is a trigger and there may be complex genetic, chemical and physical things going on in an individual which cause such an autoimmune condition to be triggered by trauma.

Honestly RSD is getting so hard attacking me everywhere and a dr said suddenly out no where ,might not be rsd after all. Can you guys imagine that, I get surgeries to place scs and all the recovery time, lumbar blocks for nothing, Because I looked ok according to him and I can walk and bend my arms and knees,so disappointed and makes so angry,dr many times are so ignorants ,instead of do research they only talk stupid stuff and believe you will agree.
Yap ,is mental and autoimmune now ,ridiculous ,in certain way many factors determine how the body reacts but been diagnose and having even an AME say rsd is in my body ,a dr saying not ,they where wrong, I don't know what To think now.so sad and also mad.:mad:

Jesika she is right - these "new" studies will very likely have absolutely no bearing whatsoever on your upcoming trial.


This entire post - which is thoughtful and very well reasoned - has no reference to "I" whatsoever. Kudos Neurochic:)

Eevo61
You say you are angry and you do sound upset in your posts - they come across as very emotional. Whatever the circumstances of your upcoming trial one thing is certain - that anger and emotion will be making your CRPS symptoms worse. It is a condition which is physiologically exacerbated by the chemical processes that go on inside your body when you are angry, upset, under lots of stress and so on. It's incredibly important for your own health to try and manage these extremes of emotion.

There are inevitably stressful times in life when that is exceptionally difficult but it is still important to try. Your mental state can have a huge effect on the severity and extent of the pain and other CRPS symptoms. This isn't to say that its all a mental condition or that it's all in your mind, it's just recognising the well evidenced fact that the physical symptoms are affected by your state of mind.

You didn't say what the orthopaedic doctor who doesn't think you have CRPS believes is actually wrong with you. Presumably he is a doctor picked by Workers Compensation or whoever is on the other side of your legal case? In that case it is his job to discredit you and to try and say you don't have CRPS. He is paid to come up with a medical report that disagrees with your own doctors' opinions. That's the way these things work. Although most doctors have little, no or woefully inaccurate knowledge of CRPS, his opinion may be nothing at all to so with his knowledge of CRPS or the current research into the condition and may be more to so with who is paying his fees.

Another reality of CRPS which causes many problems is that because the symptoms can change radically over time, a doctor who diagnoses the condition in a patient initially may see radically different symptoms than a doctor who examines that same patient months or years later. There is a real issue for patients who are in this symptom "limbo" which the medical profession has so far completely failed to address. Although the diagnostic criteria still allow a diagnosis of CRPS to be reached if symptoms which once existed have changed, many doctors don't understand this. Others are not willing to make the diagnosis based on symptoms and signs which existed at a time in the past but which are not present when they actually perform their examination.

It's also important to bear in mind that CRPS can be very difficult to diagnose. There is plenty of conflicting research out there suggesting that it is both under and over diagnosed. Many CRPS experts are concerned that it is becoming used as a dumping ground diagnosis for patients when doctors don't actually know what is wrong. All the individual signs and symptoms of CRPS can exist in other medical conditions.

None of this is an attempt to defend incompetent or lazy doctors - it's just to try and highlight that it's not always an easy condition to diagnose. Try and bear these things in mind. It might not immediately help your current situation but its important for your own physical and emotional health to take a step back and remember that things aren't always clear cut and sometimes a doctor's motivations in giving an opinion which seems unreasonable are not related to your actual health or the facts.

One thing is certain though, the calmer you can try to be when going through going through stressful times, the better that will be for your CRPS and your general health. It's not easy but it is worth it.

I have a lot of different long standing autoimmune diseases of 20 plus years. My CRPS occurred quite suddenly with no known inciting cause 17 months ago (and it's most definitely really CRPS). I believe, and my doctors believe, that in me it's mediated by an autoimmune process. The general label of CRPS/RSD may actually be more than one disease with more than one different cause. I'm happy to see any research that could help CRPS/RSD in any of its forms. It's true the idea that CRPS (at least one kind) can be an autoimmune disease is not a new one.

Exactly well put. I didn't have time to reply but if I did, it would have included some things like this but you said it way way better and more clearly. When I posted the original article, it was to have a conversation, not to say that CRPS is caused by one thing or another. I believe it has many origins, but suspect autoimmune in my case and some others as one contributing factor.

Thanks for your post, it is helpful to a lot of people.

Thanks to all for your replies, I was mad indeed , and such of disappointment was running into my head.
I got injured in 2011 and was diagnosed with rsd soon later ,got all spinal block,scs ,pt, medical treatment that honestly feels like turtute , my insurance switches groups and my original drs of two or more years are not longer part of that network and my attorney had found this ortho dr after three months of looking for one dr who takes my case due to rsd or scs they don't want to deal with that ,this dr was ok but at the time of my appointment ,no records and wasn't even able to gave me my meds until the follow up appointment ,a month later,next month,September , is not fair ,he didn't do anything and I can see him to review my meds ,was ridiculous and obviously a let my attorney and the dr office know my disappointment and unfairness , how come after three months finally I see a dr who won't do anything at all,waisted my time.
My trial is soon,and AME determine my injure right foot and ankle disable but don't consider my rsd,seriously ,not at all, and I'm fighting to get them to correct that ,rsd was part of the whole thing since he beginning ,now he said all the other dr are wrong, makes me so mad.
Is wc the worse thing ever ? Yes it is, and if I don't fight back educating my ignorant dr where I'm going to be and how I'm going to be able to treat my rsd in the future ,I got lay off because they can't accommodate me and I have nothing left but to fight for my rings to get coverage for my rsd that was in facts since the beginning ,I need to keep fighting back and forward every time to get somewhere but I wont accept anything that doesn't include rsd,I will fight no matter what, but this dr is so ignorant for real,I'm tired of this but is life,we all know and deal with same demons but different circumstances , rds is real a case.
Thanks so much and gentle hugs,Jesika .

Neurochic - well thought out post. It will be helpful to many. Thank you!
Burn - thanks for starting the conversation. Its an important one. The more we talk to weach other, the more we learn and can pass on to care providers. So far in my case, I haven't recognized any auto-immune component to my CRPS, but you have raisd my awareness of the possibility.
EEVO - I wish I could make this difficult time easier for you. You are always so kind and supportive to others here. Do you have a person who supports you through the WC process? ~Lottie

Yes I had a law office managing my case ,my old ortho dr was really nice and also recommended me so many other options but unfortunately my pain management dr was not believing rsd travels and give me suck of hard time, even though my ortho keep arguing with him about the treatments and also reports to get corrected ,I trusted my ortho so much and I can still call them for advise ,obviously just between them and me,nothing on record but they really recommending rsd specialist that came afte an AME declare me partial disable without rsd on in, but he told me to insist with the pm dr to get rsd specialist and finally the insurance accepted to pay for rsd visits and also fuehrer care ,so far I had been told that but I can't trust anyone until I see a document stating that .
Rsd is not permanent and stationary, really ,not getting better is ok according with some dr because after all ,you don't get worse,what is that? No getting worse means you are stationary stage when my whole body feels flare everyday and stress makes things worse, I really think money is the only thing everyone care about , I don't , I want my peace of mind, I need to assure I will be cover for the future and yes I will continue this awful episode of my life having hope and wishing only to get the what I can , I can't work because no one wants me with restrictions ,is a hustle but I will make it through,I hope for real.
Thanks for all your encouraging words, I got panic with that rsdsa research about autoimmune systems attacking, I need to be ok and things like that makes me so scare .
Thank you all so much ,Lottie I truly appreciate your kind and thoughtful words as well, I feel many times even though I had help I'm actually battling alone.
Gentle hugs and best wished to all, enjoy a weekend free of pain if not free of pain,at least less pain,take cafe .from Jesika .:grouphug: