The Top 10 Things You Don’t Know About Pain…

How can you say that Arthritis does not cause pain?

There are over 100 different types of Arthritis. Are you going to tell a six month old baby that the JRA they have isn’t caused by Arthritis? Or someone with Lupus, RA, etc?

Where did you get your information?

Perhaps sometimes, some of the forms of Arthritis don’t cause pain but your blanket statement does nothing but perpetuate the public’s view on the different forms of arthritis as all being the same kind.

I live with Rheumatoid Arthritis and I can guarantee that the RA is directly responsible for much of my pain.

Please retract and/or reword your statement. The ignorance regarding arthritis must be stopped and someone in your field of work should know better.

Melissa,
I appreciate the response. My statement is based off of my expertise in literature analysis of pain. Research has indicated that there is not a causative relationship between any form of arthritis and pain. Pain is 100% an output from the brain based upon the brains suspician of actual or potential tissue damage. If the brain does not percieve an afferent input as threatening, then an output (pain) will not occur. Pain is merely an associated symptom of RA. RA does not cause pain.

I understand that this may be difficult to understand or accept but there have been loads of literature produced in the past few years to support this concept. I think that the void is that many medical practitioners are unable to grasp that pain is originating from a process occuring within the neuromatrix. This is likely because much of the research has occured within the past 10 years and it takes a while for the medical community to catch up. And you can contest that you are still in pain…correct? Treating peripheral tissues or rheumatic factors may not have been successful in terms of controlling pain because the pain is a central process. If you would like any research regarding this, feel free to email me @ joseph.brence@physiocorp.com and I would be happy to send any your way.

That’s how pain works, your brain tells you that you’re in pain. By that logic, having your leg chopped off doesn’t cause you pain, because it’s just your brain telling you that you’re in pain. Telling people that it’s just their brain that’s causing them to be in pain is a slap in the face to people who suffer from real pain from their real conditions every day. Most people know that it’s the brain that signals the nerves to tell you that something hurts – but what is it that is causing the brain to do that?

You’ve taken a subject that is more complicated than most people will ever know and broken it down into three sentences and expect people to understand what you mean and understand your side of this?

All you’ve done is angered a bunch of people who are in pain every day because of their disease(s), who don’t care that it’s their brain telling them they’re in pain because they have a condition that has caused a problem and you’re there telling the world that their Arthritis isn’t causing them pain.

So for everyone who has RA, Lupus, Psoriatic Arthritis, JRA, Anklyosing Spondylitis or Sjogren’s Syndrom – all you’ve accomplished is provided a source for others to say them, “Oh it’s not your Arthritis causing you pain – it’s your lack of exercise”.

You’ve done more harm than good with this article – hopefully one day you will see that.

Melissa,
The statement is not based off of opinion. Its based off of neuroscientific research. Let’s use your example of having your leg chopped off…Why do individuals who lose a limb, experience pain in a “phantom limb” for years following the trauma? This is due to the brain not recognizing that the limb is no longer in place. There is a mismatch between the brains virtual representation of the body and their actual body. How do we diminish this? We bring the limb back to life through use of mirrors to create a visual illusion to trick the brain by seeing that limb when its actually the unaffected limb.

I believe the medical community has failed individuals such as yourself by trying to correct issues peripherally when that is not the issue. Chronic pain is the #1 cost to the United States healthcare system, and this is likely due to the medical community treating the wrong systems. I am not denying that individuals with arthritis can experience pain. Many live with pain everyday. But many with various forms of arthritis are painfree. There is not a causative relationship between the two. I believe there is hope for treating people who live in pain, but to do so, the medical community must understand that the pain is a descending output from the brain and the neuromatrix must be the area which we attempt to inhibit.

There is alot of good research to indicate that secondary variables such as psychological variables including depression, anxiety, pain catastrophizing, kinesiophobia, decreased activity increase your ability to develop chronic pain. There is research indicating that educating the public about pain neuroscience is beneficial in reducing pain. That was the goal of this piece.

I want you to understand that despite a diagnosis, there is hope in diminishing your pain. Obviously the medical community has influenced you otherwise but I would like to offer any resources to you that I can in helping you.

I would really like to help you out Melissa by providing you some literature that explains some of these concepts. Again, my email is joseph.brence@physiocorp.com

Here are some abstracts you can review in the meantime:

http://onlinelibrary.wiley.com/doi/10.1002/acr.20587/full

http://informahealthcare.com/doi/abs/10.3109/03009742.2011.594963

http://www.sciencedirect.com/science/article/pii/S0304395911000042

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2946080/

According to the National Institute of Health, the origin of all pain is inflammation and the inflammatory response. RA, Lupus, ankylosing spondylitis, and other autoiummune arthritis illnesses are all inflammatory arthritis diseases. The pain from these illnesses is derived from the inflammation, as well as from the damage to the tissue that is caused from the joints that are broken down over time by the disease. Please refer to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2771434/, where they state, in summary “The biochemical mediators of inflammation include cytokines, neuropeptides, growth factors and neurotransmitters. Irrespective of the type of pain whether it is acute or chronic pain, peripheral or central pain, nociceptive or neuropathic pain, the underlying origin is inflammation and the inflammatory response. Activation of pain receptors, transmission and modulation of pain signals, neuro plasticity and central sensitization are all one continuum of inflammation and the inflammatory response. Irrespective of the characteristic of the pain, whether it is sharp, dull, aching, burning, stabbing, numbing or tingling, all pain arise from inflammation and the inflammatory response. We are proposing a re-classification and treatment of pain syndromes based upon their inflammatory profile.”

Further, I think part of the problem that we in the autoimmune arthritis community find both offensive and misleading in your article is that you did not, as you infer in your response to Melissa, say that the pain from arthritis was a direct result of responses coming from the brain; you instead implied that the pain is often more directly the result of other factors such as “depression or lack of exercise.” This is both unfair and an inaccurate representation of the disease and the disease activity.

The International Autoimmune Arthritis Movement believes strongly in providing the true and accurate facts regarding autoimmune arthritis diseases to the public, and we would ask again that you please restate this portion of your article to provide the facts in their true light.

Thank you.

Tami,
The article as well as comments I have provided are based upon what literature is telling us regarding pain. The International Association for the Study of Pain is the leading authority on telling us what pain is. They define pain as “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.” In the case of RA, I am not denying that inflammation is sending affarent information to the brain which is causing it to send a descending output of pain to the joint. What I am stating is that there is not a causative relationship in which any form of arthritis causes pain. Pain is based upon a suspician that a tissue is in danger, and this is the brains mechanism of protecting it. I provided a few abstracts in my last comment which support my arguement that when you modulate secondary variables, you modulate pain. And this is true for any condition. If rheumatoid arthritis caused pain, and you cannot eliminate RA, then you cannot eliminate pain. The results in the few abstracts I provided indicate that by changing secondary variables such as activity level, pain appeared to decrease.

The article that you cited was published as free access by the NIH, but is not an article published by the NIH. It was published in a low impact journal called Medical Hypothesis. There have been countless articles in high impact journals, such as Pain, which would refute the origin of pain symptoms as described in that article, and follow the concept of the neuromatrix.

My comments are not my opinion and are based upon high-quality scientific literature. They are facts based upon neuroscientific research regarding pain. If you are an advocate for improving the treatment of RA, I would be willing to share published literature on pain with you. My goal is to improve the outcomes of anyone living with pain and believe the medical community has failed so many people by blaming the wrong cause. Pain, 100% of the time, in any medical condition, is an output from the brain based upon actual or percieved tissue damage. You may not be able to cure RA, but I believe we can do a much better job at controlling an associated symptoms such as pain but altering our approach.

Joseph, I do understand your point, and I’m really not trying to argue the facts in terms of the science. I think we are speaking at cross-purposes here and I apologize if I am not communicating my point clearly.

What I see as the problem here is that, while in this forum you are openly sharing your opinions and you state, “Research has indicated that there is not a causative relationship between any form of arthritis and pain. Pain is 100% an output from the brain based upon the brains suspician of actual or potential tissue damage. If the brain does not percieve an afferent input as threatening, then an output (pain) will not occur. Pain is merely an associated symptom of RA. RA does not cause pain.” This is understandable and something most of us could probably agree upon, especially with scientific evidence to back it up if we so requested.

But in your article, that’s not how you phrase it at all. You say, “Arthritis does not cause pain. Despite the two being related, not all individuals with arthritis experience pain. Pain from arthritis is often correlated to secondary variables such as inactivity, depression, etc.” This does not give a complete explanation that the average reader will understand (they will not put 2-and-2 together and understand that you mean the pain is coming from signals from the pain making the pain an associated symptom of RA). All they will hear is that you feel mainly the pain from RA is correlated to variables such as depression and inactivity.

I hope you can understand…it’s basically a matter of semantics. What’s important to us, and to you, I should hope, is that the public understands your message, and that they are hearing and learning from it. And you, like IAAM, would want them to learn what is true and factual. So all we are asking is that you reword your statement to make it a bit clearer so that there will not be the misconception out there that you believe the pain from RA is from people being depressed and not exercising.

We (IAAM) would like to email you to request further information for our resources. Thank you for your kind offer.

Thank you again for your time and for sharing with us.

Here are some references for your organization. They are published literature in high impact journals over the past couple of years in regardings to pain neuroscience and rheumatic disorders. Please at least read the abstracts I have provided. The article you provided is a hypothesis–not research. I have provided high-level pieces of literature. Again, my goal is to help anyone in pain :

http://www.mendeley.com/research/pain-neuromatrix-approach-patients-chronic-pain-1/

http://biblio.physiotek.com/sites/biblio.physiotek.com/files/Woolf%20CJ%20Pain%202010.pdf

http://www.sciencedirect.com/science/article/pii/S0049017211002204

http://www.sciencedirect.com/science/article/pii/S152169420700040X

http://www.biomedcentral.com/content/pdf/ar3306.pdf

http://psycnet.apa.org/journals/hea/26/3/241/

http://www.nature.com/nrrheum/journal/v6/n4/abs/nrrheum.2010.22.html

http://onlinelibrary.wiley.com/doi/10.1002/acr.20251/full

Tami,
I appreciate the response and believe we were typing responses simultanously. My statement, as written, is factually correct based upon the evidence I have provided. If I were to redact it, I would go against what research is telling us. As a few of the articles I shared demonstrate, increasing activity levels and treating psychological factors, are correlated with decreased pain in people with RA. These secondary variables are treatable and can affect disability and outcomes.

I would be more than happy to provide literature for you (full-text), help you and your organization understand what is coming out in regards to chronic pain and rheumatic disorders, and occasionally write a blog or article describing how to better undetstand what literature is teaching us about how to modulate pain when living with a rheumatic disorder.

By telling someone that they will be in pain, when given a diagnosis, will often cause that person to hurt more. Perceptions and expectations have a large influence over pain. We shouldn’t say something will cause something unless we have evidence showing a true causative relationship which cannot be altered. I believe the first step to treating chronic pain is to give individuals hope that there are ways to control it.

Joseph,

I believe what the IAAM team is trying to explain to you is that while your statement, as written, may be “factually correct based on the evidence you provided”, the way it is phrased is what is causing the issue- NOT your position on pain. IAAM is requesting that you find an alternative way to explain your facts because your choice of wording is, frankly, poor. Clearly it must be due to the overwhelming reaction in the autoimmune arthritis community. As an organization, we are appreciative for your resources and information, and again, we are not intending to combat your research. Our role is to correct misinformation OR, in this case, to help correct any wording that could be misleading.

We have some facts as well- they involve dozens upon dozens of patients furious with your posting. But please understand, none of them are upset with the facts of your published research; all of them are upset because of the way you chose to present those facts. In addition, while we appreciate your offer to provide information regarding chronic pain and rheumatic disorders to help us “better understand” the literature, this issue here is not inclusive of our lack of understanding…the issue is that your choice of verbiage creates misunderstanding.

I would be more than happy to help you an alternate statement that would not compromise the purpose or intent of your article, but rather shed some light on interesting research in a way that is not potentially offensive to the parties it targets.

Please feel free to email me if you would like to work on revised text that would not only lessen the outrage in the arthritis community, but in addition would shed a positive light on this factual, and helpful research.

Many thanks,

Tiffany Westrich
Founder & CEO
The International Autoimmune Arthritis Movement
tiffany@IAAMovement.org
I would be more than happy to provide literature for you (full-text), help you and your organization understand what is coming out in regards to chronic pain and rheumatic disorders, and occasionally write a blog or article describing how to better undetstand what literature is teaching us about how to modulate pain when living with a rheumatic disorder.

I resubmitted the post as soon as I sent the published one, deleting the text under my name, which I was using to reference a response. Seemingly the one that passed through moderation was the one with the reference text, so please disregard that portion. My apologies if it lent to any confusion!