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.

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 .