Thursday, June 23, 2011

We’re Hunting Wabbits: Labels, Research and Doctors

This is a blog I resurrected from the archives because I felt it needed a face lift.

Questions from one of my FM/CFID/CMP friends.“I am on a hunt for the right diagnosis.”

My friend has genuine and valid concerns for understanding why the labels/names have changed over the years and what it really means, why the doctors that treat us seem to have less information than we do, and how to sort through the cross over symptoms of FM, CFID, now known as CFS/ME, and CMP.

My response:Ah, yes. It is the research, and we are moving in the right direction. Newer research shows that possibly all people with fibro also have chronic myofascial pain (CMP) from trigger points (TrPs). CMP is also known as MPS, (myofascial pain syndrome). Why do Devin Starlanyl and I switch terms? MPS suggests a syndrome and we know now that TrPs are caused by excessive release of acetylcholine (a chemical messenger between the brain and the peripheral nervous system) at the nerve to muscle junction, moving it out of the syndrome classification and into a disease classification. What we don’t know about chronic myofascial pain (CMP) from myofascial trigger points is why in some people TrPs keep recurring, when in the patient with acute injury TrPs can be treated and they remain gone unless a re-injury occurs. I hypothesis that this could be because of poor cellular healing in FM, and the excessive release of pro-inflammatory cytokins in the absence of inflammation and cellular injury, which in turn creates a hypoxic state (not enough cellular oxygen), and creates an ion channelopathy, and the domino effect begins, and repeats itself over and over again. This is where CMP comes in. It is believed to be and research is beginning to support that people with FM also have chronic myofascial trigger points, yielding chronic myofascial pain. I speak to this frequently, and a great deal of research into this went into the book, which was published in 2010, and the research continues to bear fruit in this direction.

Trigger Point (TrP) or Myofascial Trigger Point(MTrP): A hypersensitive bundle of muscle fiber in a taut band of muscle that causes dysfunction of the muscle involved, pain, and a referral pattern that is consistent among all patients for that specific trigger point. Anywhere there is muscle, a trigger point can occur.

Why is research yielding this? We know more now about CMP than we did when the FM model erected (a tool for selecting FM patients in some of the first studies, it was not meant to be a diagnostic tool, but evolved into one). I kept wondering why all my pain docs thought FM was part of the TrP component, when the tender point model has never suggested the presence of myofascial trigger points. Could it be that they were there all along but we didn’t take the time or know how to assess or feel for the knotted up muscle fibers? Possibly, the taut band of muscle was too tight in these participants to feel the trigger point (TrP). I suspect, that those with FM diagnosis without TrPs (if that turns out to be true, replication studies are needed) may have been misdiagnosed, OR there is a subset of FM patients that has both FM and CMP. With better participant screening we will be seeing better study results. We do know that people can and do have myofascial trigger points but do not have FM.

In FM/CMP complex it is the dysfunctional HPA axis that (central sensitization) that bombards the periphery (nerve to muscle) with the wrong messages, or possibly the message for pain relief from the trigger point (in response to the excessive release of the neurotransmitter chemical acetylcholine) never reaching the brain.

In research, things take time and funding is needed. Despite all of the recent controversy, I still suspect that XMRV related viruses will be in a subset of CFS/ME, (chronic fatigue syndrome/myalgic encephalomyelitis) patients like neutrally mediated hypotension (NMH) and postural orthostatic tachycardia (POTS).

There are many cross over symptoms between FM and CFS/ME. You should be able to sift through and determine which are attributable to you. If you are having difficulty because it seems you have them all, it is possible you have all three, FM, CFS/ME, and CMP, as I do. Research may also yield that there is more than a casual connection to FM and ME/CFS and other neuroendocrineimmune (NEI) disorders. Though not published the WPI did find XMRV in their samples of FM patients. As we know it now though FM and CFS/ME are similar they are different, and the differences in the science are discussed in the book.

The WPI study and other studies suggesting a biological marker for CFS/ME, have not only stimulated the research, the term CFS is no more. Scientists and the CFSAC (an action committee on CFS/ME that reports directly to the Secretary of Health in the administrative branch of the US government), now agree there is a biological cause and the need for the name change. For those of us who have dealt with this and screamed out for a name change this inspires hope.

See my blog Hope for ME/CFS a Possible Biological Marker

Symptomatology and quality of life.

How are your symptoms affecting your life? And, have you found a doctor that listens to and takes your symptoms seriously? In their defense, this is new science. Some filters down to their individual specialty journals, and not. I doubt many subscribe to Science, as this is for scientists mostly. Docs are clinically minded. A GOOD doctor wants to learn, but all are intimidated by patients and mention of the internet. It is in the way you approach them. If your doc isn’t willing to be part of your care (it should be a trusting collaborative relationship), try to find a new one. Ask, why do pharmaceuticals have an edge? The answer is they contact doctors and educate them about their new cutting edge product.

Suggest to your doctor, “You are probably already aware of this, but I was not, and wanted to share this article with you.”

I think if we were educating them regularly about FM, CFID and CMP they would know more about it. That is why I wrotea letter to the editor of The American Academy of Pain Management, which will be published in July issue. Don't expect your doctor to sort through it all as we are all still learning. Have patience if he/she seems interested in learning. If not, GET A NEW DOCTOR!

Things are changing. This is an exciting time for us. Push and support research.
“Bestowed on me is strength from those who exemplify the possibilities of hope, not only believing in the right thing, but putting a megaphone to their voice and action behind it” Harmony and Hope,  Celeste

Share Care Expert
Website http://TheseThree.comTwitter!/FibroCFSWarrior
Author: Integrative Therpies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-author Jeff Miller, PhD
Available at book stores with direct links at: Sharecare, this blog and my website


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About XMRV – Whittemore-Peterson Institute


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