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Sunday, June 22, 2014

The Harsh Reality of Migraine and Myofascial Trigger Points and Restless Leg Syndrome by Celeste Cooper



What is a migraine?

Migraine is a type of headache. You can read more about migraine here


One thing of certainly is the uncertainly regarding migraine. Despite the fact that over 30 million Americans live with migraine, we don’t know what causes them. Some studies suggest there is a disruption in brain’s neuro-metabolic pathways, others suggest they are related to hyper or hypo brain cortex activity, take your pick because those studying migraine don’t agree. All we have is theories. There is evidence to suggest that migraine headaches are caused by a nerve disruption in the brain that affects the vessels, but even vascular headaches can differ.

*Warning. If it is a new symptom for you, have it checked out immediately as sudden onset, unusual headache can be an indication of an impending stroke.

Because migraines originate within the central nervous system, they can be a great factor in decreasing our pain threshold making every nerve ending is fresh, raw and exposed. In this article we will discuss an often overlooked, yet harsh, reality to migraine: myofascial trigger points, and comorbidrestless leg syndrome.


The Myofascia and Migraine

It’s difficult to say which came first, the cart or the horse, but suffice it to say, if you have been a migraineur for most of your life, the aging process may contribute to your migraine. What was once a primary migraine, can become a secondary headache or migraine, or both!

As we age, or as an early disease process, our neck bones can develop arthritis and the discs between them can degenerate. For the migraineur, this can be a huge aggravating factor and can precipitate a migraine attack. You know it is a migraine because it has all the same hallmark symptoms. The difference is that the usual abortive medications (if they work for you) only work temporarily. In these instances, it is most important to know if you have myofascial trigger points, and if you do, it is important to address them. Degenerative neck disease can affect the muscles supporting the neck and head. You can learn more about trigger points on my website here, and there is a great book “Migraine Brains and Bodies: A Comprehensive Guide to Solving the Mystery of Your Migraines” by C.M. Shifflett. I have this book in my personal library and have written a review on Amazon.
From Summer Devotions 

If you have experienced a muscle that feels like a golf ball at the base of your skull, or if you find tiny strings of muscle fiber around your temple area (on the same side of your migraine), you have myofascial involvement. Neck and upper body muscles that are tight as banjo strings or hard as rocks that have pea sized knots that you can feel if the muscles isn't too tight can also contribute to, and/or sustain, your migraine. If you have neck disease, TMJ, or grind your teeth, you are at greater risk of developing these knots known as myofascial trigger points.




Migraine and restless leg syndrome (RLS)

Rest Leg Syndrome

Did you know different researchers have made a connection between migraine and restless leg syndrome?  

This is not a new finding, but it is significant to note that research in this area continues. In a case-control study done by Fernández-Matarrubia, et. al, it was found that “RLS patients had higher lifetime prevalence of migraine than non-RLS controls, and active migraine without aura was significantly more prevalent in patients with RLS than in controls… Within the RLS group, patients with migraine had poorer sleep quality than those without migraine.”  Another study done in Italy by Zanigni, et al suggests “shared pathogenic pathway which would implicate new management strategies of these two disorders.”

So, why is this important? As discussed on my website, and in our book, restless leg syndrome (and it’s cohort periodic limb movement during sleep) not only has a central nervous system component, it can also be affected by myofascial trigger points.

There Is Hope

According to the American Headache Society, there is a medication showing promise. “Developed by Alder Biopharmaceuticals, the drug is currently known by its experimental name: ALD403. It works on a small protein in the body thought to play an integral role in migraine headaches. The study involved patients with a history of 5-14 migraine days per month. They received a single dose of the new medicine by intravenous injection.”

Approved by the FDA is a new devise called Cefaly, a transcutaneous electrical nerve stimulation (TENS) unit. Because trigeminal nerve may be involved in migraine, this device may be helpful. It is available in the U.S. by prescription only. Keep in mind, “The proof is in the pudding” and just like medication, cautious optimism is prudent.

If you suspect there is a myofascial component to your headaches, seek the help of a specially trained myofascial therapist, chiropractor, physical therapist  or pain specialist that understands myofascial trigger points and the pain patterns specifically related to migraine. If you also have RLS, talk to your doctor about a sleep study. There are options. Education is power, so take up arms against the harsh realities of migraine.


Conclusion

Disrupted sleep can contribute to both migraine and restless leg syndrome. Periodic limb movement during sleep makes sleep quality insufficient. So if you have migraine and RLS, expect, or suggest that you have a sleep study. Treating RLS and sleep could help. It’s worth a try. As migraineurs, we have no problem reaching for answers. I know I have been through enough trials, and after attending the American Headache and Migraine Association (AHMA) conference in Scottsdale, AZ last year, I know one thing, not all neurologists understand migraine or all available treatments. I am still searching for a headache specialist, and if you don’t have one, I suggest the same for you.

You can read about my personal story with migraines in my blog “My story as a migraineur by Celeste Cooper,” here.

Other blogs on migraine

Migraine Awareness – An exercise that might help when all else fails and some recent research, here.
Scream “4,”Cervicogenic Migraine and Myofascial Trigger points: June Awareness, here.
About migraine from my website by Celeste Cooper, RN, here.
Understanding Migraine and the Role of Myofascial Trigger Points, here.
Neck Pain, Migraines, and Myofascial Trigger Points, here.

Resources:

Ashkenazi A, Blumenfeld A, Napchan U, Narouze S, Grosberg B, Nett R, DePalma T, Rosenthal B, Tepper S, Lipton RB. Peripheral nerve blocks and trigger point injections in headache management - a systematic review and suggestions for future research. Headache. 2010 Jun;50(6):943-52. Epub 2010 May 7.
Bodes-Pardo G, Pecos-Martin D, Gallego-Izquierdo T et al. 2013. Manual treatment for cervicogenic headache and active trigger point in the sternocleidomastoid muscle: A pilot randomized clinical trial. J Manipulative Physiol Ther. [July 8 Epub ahead of print]. 

Boyer N, Dallel R, Artola A et al. General trigeminospinal central sensitization and impaired descending pain inhibitory controls contribute to migraine progression. Pain. 2014. [Mar 12 Epub ahead of print.] 

Fernández-Matarrubia M, Cuadrado ML, Sánchez-Barros CM, Martínez-Orozco FJ, Fernández-Pérez C, Villalibre I, Ramírez-Nicolás B, Porta-Etessam J. Prevalence of Migraine in Patients With Restless Legs Syndrome: A Case-Control Study. Headache. 2014 May 20. doi: 10.1111/head.12382. [Epub ahead of print]

Pinto Fiamengui LM, Freitas de Carvalho JJ, Cunha CO et al. 2013. The influence of myofascial temporomandibular disorder pain on the pressure pain threshold of women during a migraine attack. J Orofac Pain. 27(4):343-349.
Thomas K, Shankar H. 2013. Targeting myofascial taut bands by ultrasound. Curr Pain Headache Rep. 17(7):349.

Watson DH, Drummond PD. Cervical Referral of Head Pain in Migraineurs: Effects on the Nociceptive Blink Reflex. Headache, 2014

Zanigni S1, Giannini GMelotti RPattaro CProvini FCevoli SFacheris MFCortelli PPramstaller PP. Association between restless legs syndrome and migraine: a population-based study. Eur J Neurol. 2014 May 20. doi: 10.1111/ene.12462. [Epub ahead of print]

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  Celeste Cooper, RN

Books:
Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 


All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  


Monday, June 16, 2014

Countdown Book Promotion - Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SUMMER DEVOTIONS, Revised 2014.


The "Kindle Discount Countdown" for Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain SUMMER DEVOTIONS runs for one week.



It works like this:

                                    % Discount
1            June 17, 2014 at 8:00 AM (PST)        48h      $0.99  (84% Discount)
2            June 19, 2014 at 8:00 AM (PST)        48h      $1.99  (67% Discount)
3            June 21, 2014 at 8:00 AM (PST)        48h      $2.99  (51% Discount)
End        June 23, 2014 at 8:00 AM (PST)                    Original list price $5.99         

It is available in the US here 
It is available in the UK here 


~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  Celeste Cooper, RN

Books:
Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 



Saturday, June 14, 2014

My story as a migraineur by Celeste Cooper


As migraineurs, we go through many trials. Not just with pain and other associated symptoms, but also with a plethora of medications. So, I decided to start my story with an encounter. My neurologist decided to change my calcium channel blocker timed released to two times a day. He did this so I would have a constant stream (24 hour release medications do not actually release at the same rate for the full 24 hours), and if I didn't tolerate the higher dose, I could go back to one per day until he sees me again. The clerk told me my insurance denied it, so I asked to speak with the pharmacist. I braced myself for the usual lecture, but something else happened. When I explained to him my neurologist's rational, he looked at me and said...

I UNDERSTAND. I GET IT NOW. YOUR NEUROLOGIST MAY BE ON THE RIGHT TRACK.
I TOO HAVE MIGRAINES.


His words were music to my ears. Here was a healthcare professional that understood exactly why my medications are the way they are. He got it, because he shared this road we all walk. His words made the bitter pill I would not get to swallow easier to bear.



I have suffered with migraines for forty-eight years. I always lived with the hope that my migraines would ease with age as did my paternal grandmother, but quite the contrary has happened. They have become more frequent and now I have not only classic migraine, I also have cervicogenic migraine. You can read more on the types of headaches and migraine on my website here

My life has consisted of unpredictable severe and incapacitating pain, vomiting until breaking all the blood vessels in my face, accompanied by IBS attacks as my body revolts against the enemy within. My blood pressure has dropped out of sight, literally. 

I have suffered with migraines for forty-eight years. I lived with the hope that my migraines would ease with age, as did my paternal grandmother, but it was not to be. Instead, they have become more frequent and now I have not only classic migraine, I also have cervicogenic migraine. You can read more on the types of headaches and migraine on my website here

I have always needed accommodations. I was the kid embarrassed by having to raise my hand to go to the nurse's office, stopping by the bathroom to vomit then laying on the cot waiting until I could get home, hoping I didn't lose my lunch or my bowels on the bus. I was the young adult who had to retreat to a dark room while in college and miss classes that I should not miss. I remember my first REAL job as a young adult and working with a very kind woman, who always made sure I had a dark place to go.

No difference came with age other than the advent of Imitrex, which has made my life more bearable, though it does not work as well as it once did. I have been made to feel that I created this problem. I have lived long enough to be judged as a neurotic middle aged woman who couldn't deal with life, and I have lived knowing the statistics of having a stroke as I age into later life, because I am a migraineur.

My brain has felt ready to explode, I have prayed for a hot poker to relieve the pressure behind my right eye. If you are a migraineur reading this, you know exactly the other things I have prayed for as well. I know what transitioning is. I have lost my vision; have prodromal (early symptoms) of eye lid dropping and my right eye crossing. Sometimes after vomiting, it will move to the left, that is when I know my nightmare will soon lessen. I have tried every drug known to man to prevent them; nothing works. 


I have been poked and prodded, promised miracle injections that didn't work. I have had Botox(T)  in my neck, which rendered me in so much pain I cried every day until it wore off, that was several months. (I will clarify that the Botox was to treat my cervical degeneration, not the migraine protocol.)

Yes, I have lived the migraine life. There is no other pain like it, and I have plenty of other pain conditions to boot. We all know that even after an attack leaves, we do not feel like tripping through a field of flowers as pharmaceutical ads imply—If only. We have come a long way in understanding them, but we have miles to go before we sleep.

Help change the world. Raise awareness for migraine treatment and prevention. Join a group like the AHMA, follow AmericanHeadache Society or others linked on my website. Even if you don't have them often, you know you never want them again.

My first blog of the month is here

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  Celeste Cooper, RN

Books:
Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 


All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  


Thursday, June 12, 2014

Sneak Peek – Revised edition of Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SUMMER DEVOTIONS


Inside the Cover:

“Broken Body – Wounded Spirit is a movable feast of poetry, reflections, coping strategies, educational tidbits, enchanting imagery, and more. For anyone in persistent pain holding a desire to restore physical, mental, emotional, and spiritual balance, Celeste and Jeff offer help, hope, and a path to self-empowerment.” Myra J. Christopher, Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics, and Principal Investigator of the Pain Action Alliance to Implement a NationalStrategy.


Summer 
Day One

The Power of Summer
               
Today is the day to begin our summer growth, a time to mature into a different way of thinking about how we can use and improve on what we learned from the Spring Devotions in this series. As we embrace the summer season and feel the warmth of the sun, we learn to rise up in the face of summer power and empowerment despite our personal adversities. The benefits of the season are bountiful...

Spending 20 minutes in the sun can:
  • Boost vitamin D levels (having many health benefits).
  • Provide an opportunity to get up and get going.
  • Improve our mood...
and more.


Things we can do while we are enjoying the outdoors: 
  • Appreciate the detail of a flower by looking at it closely with a camera or magnifying glass.
  • Smell new mown grass and feel it under our feet.
  • Spend time visiting with a friend...

 and more.


What are some other things I could add to these lists?


Promotion for both revised paperback and Kindle Ebook 

Coming Soon!



Saturday, June 7, 2014

Migraine Awareness – An exercise that might help when all else fails. Followed by some recent research. by Celeste Cooper






Because migraine occurs in many patients with fibromyalgia, chronic fatigue syndrome, and chronic myofascial pain and this is migraine awareness month, I felt you might find the following excerpt from our book Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain helpful. Following the excerpt are some more recent research citations on migraine if you are so inclined to share with your healthcare provider.

Before the advent of medications to treat migraine, I had to find ways of working through them in other ways. Some not so pleasant, but I learned early in my life how to meditate through pain.


Excerpt:
From Integrative Therapies for Fibromyalgia, Chronic FatigueSyndrome and Myofascial Pain: The Mind Body Connection, pgs. 285-286.

I combine body scanning with progressive muscle relaxation for dealing with migraine, chronic pain, and tension...I lie down on my back in a comfortable, quiet place, usually my bed.

  • I allow my eyelids to gently close while feeling the softness of their flowing movement across my eyes.
  • I practice diaphragmatic breathing, focusing on the sound of each breath as the air moves in and out of my nose or mouth.
  • I begin progressive relaxation by starting at the top of my head and proceeding down my body to the tips of my toes, paying close attention to each individual segment.
  • I contract the muscles around the area I am concentrating on, and allow the tension to release as I relax the muscles.
  • If I have a hard time releasing the tension, or find my mind keeps drifting back to this area after I have left it, I go back to it.
  • For resistant areas, I visualize something comforting as I release the tightened muscles. I might imagine my head full of gelatin that starts to melt as I release the tension in my head. I imagine multiple colors blending into one, full of the strength needed to push out the resistant toxins.
  • As I leave each area, I take a deep breath and blow off the cellular waste that had been allowed to accumulate there.
  • I allow myself to recognize different sensations, like pain, numbness, tightness, or coldness.
  • I move along my body parts, from eyebrows to nose, to mouth, to neck, to shoulders, to arms, to fingers, and so on.
  • If the soreness or sensation is deeper, perhaps lodged in my organs where I cannot intentionally contract and release, I visualize something internally soothing, like warm herbal tea or chicken broth flowing from my mouth down my throat, then coating my stomach and comforting me.
 If I’m still awake by the time I get to my toes, I take a deep breath and allow my body to cleanse itself as a whole.

You can find more on migraine on my website here.



Some recent research from the NIH, Pub Med

Bashir A, Lipton RB, Ashina S et al. 2013.  Migraine and structural changes in the brain: A systematic review and meta-analysis. Neurology. 81(14):1260-1268. “This review and meta-analysis was conducted: “To evaluate the association between migraine without aura (MO) and migraine with aura (MA) and 3 types of structural brain abnormalities detected by MRI: white matter abnormalities (WMAs), infarct-like lesions (ILLs), and volumetric changes in gray and white matter (GM, WM) regions….These data suggest that migraine may be a risk factor for structural changes in the brain. Additional longitudinal studies are needed to determine the differential influence of migraine without and with aura, to better characterize the effects of attack frequency, and to assess longitudinal changes in brain structure and function.”

Bodes-Pardo G, Pecos-Martin D, Gallego-Izquierdo T et al. 2013. Manual treatment for cervicogenic headache and active trigger point in the sternocleidomastoid muscle: A pilot randomized clinical trial. J Manipulative Physiol Ther. [July 8 Epub ahead of print].  Twenty patients. “The preliminary findings show that manual therapy targeted to active TrPs in the sternocleidomastoid muscle may be effective for reducing headache and neck pain intensity and increasing motor performance of the deep cervical flexors, PPT (pressure-pain threshold), and active CROM (cervical range of motion) in individuals with CeH (cervicogenic headache) showing active TrPs in this muscle. Studies including greater sample sizes and examining long-term effects are needed. “

Boldingh MI, Ljostad U, Mygland A et al. 2013. Comparison of interictal vestibular function in vestibular migraine vs. migraine without vertigo. Headache. [May 15 Epub ahead of print]. This study found vestibular abnormalities in all migraine patients tested. 

Boyer N, Dallel R, Artola A et al. General trigeminospinal central sensitization and impaired descending pain inhibitory controls contribute to migraine progression. Pain. 2014. [Mar 12 Epub ahead of print.] 

Castaldo M, Ge HY, Chiarotto A et al. Myofascial trigger points in patients with whiplash-associated disorders and mechanical neck pain. Pain Med. 2014. [Mar 18 Epub ahead of print.]  “Active MTPs are more prominent in WAD (whiplash associated disorders) than MNP and related to current pain intensity and size of the spontaneous pain distribution in whiplash patients..." 

Cvetković VV, Strineka M, Knezević-Pavlić M, Tumpić-Jaković J, Lovrencić-Huzjan A. Analysis of headache management in emergency room. Acta Clin Croat. 2013 Sep;52(3):281-8.

Evans RW, de Tommaso M. 2011. Migraine and fibromyalgia. Headache. 51(2):295-299

Gerwig M1, Rauschen L, Gaul C, Katsarava Z, Timmann D. Subclinical cerebellar dysfunction in patients with migraine: Evidence from eyeblink conditioning.Cephalalgia. 2014 Feb 24. [Epub ahead of print]
CONCLUSIONS: Reduced acquisition of CRs in the cohort of female patients studied here supports findings of a cerebellar dysfunction in migraine.

Kashikar-Zuck S, Zafar M, Barnett KA et al. 2013. Quality of life and emotional functioning in youth with chronic migraine and juvenile fibromyalgia. Clin J Pain. [Feb 26 Epub ahead of print]. “Chronic pain in children is associated with significant negative impact on social, emotional and school functioning.” …“Youth with JFM (juvenile fibromyalgia) had significantly higher anxiety and depressive symptoms, and lower quality of life in all domains. Among children with CM (chronic migraine), overall functioning was higher but school functioning was a specific area of concern….Results indicate important differences in subgroups of pediatric pain patients and point to the need for more intensive multidisciplinary intervention for JFM patients.”

Küçükşen SGenç EYılmaz HSallı AGezer IAKarahan AYSalbaş ECingöz HTNas OUğurlu H. The prevalence of fibromyalgia and its relation with headache characteristics in episodic migraine. Clin Rheumatol. 2013 Feb 27. [Epub ahead of print] “This study indicates that the assessment and management of coexisting FM should be taken into account in the assessment and management of migraine, particularly when headache is severe or patients suffer from widespread musculoskeletal pain.”

Laursen JC, Cairns BE, Kumar U et al. Nitric oxide release from trigeminal satellite glial cells is attenuated by glial modulators and glutamate. Int J Physiol Pathophysiol Pharmacol. 2013. 5(4):228-238. “…these findings suggest that targeting SGCs (satellite glial cells) may provide a novel therapeutic approach for management of craniofacial pain conditions such as migraine in the future.”

Lovati C, Mariotti C, Giani L et al. 2013. Central sensitization in photophobic and non-photophobic migraineurs: possible role of retino nuclear way in the central sensitization process. Neurol Sci. 34 Suppl 1:133-135. “Overall, these findings suggest that light stimulation may contribute to central sensitization of pain pathways in migraineurs, possibly contributing to progression into chronic forms. The possible connections underlying this type of sensitization are offered by the recently published data on a non-image-forming visual retino-thalamo-cortical pathway which may allow photic signals to converge on a thalamic region which is selectively activated during migraine headache.”

Pérez C, Villalibre I, Ramírez-Nicolás B, Porta-Etessam J. Prevalence of Migraine in Patients With Restless Legs Syndrome: A Case-Control Study. Headache. 2014 May 20. doi: 10.1111/head.12382. [Epub ahead of print]

Pinto Fiamengui LM, Freitas de Carvalho JJ, Cunha CO et al. 2013. The influence of myofascial temporomandibular disorder pain on the pressure pain threshold of women during a migraine attack.  J Orofac Pain. 27(4):343-349. Conclusion: Migraine attack is associated with a significant reduction in PPT [pressure pain threshold ] values of masticatory muscles, which appears to be influenced by the presence of myofascial TMD pain.”  [This was a very small sample size. While TMJ can have an MPS component, it is not synonymous, and I suspect the migraine with TMJ group would also have had MTrPs located in pain referral patterns. This very likely contributes to the reduction of PPT as well. Cc]

Silva-Néto RP, Peres MF, Valença MM. Accuracy of osmophobia in the differential diagnosis between migraine and tension-type headache.  J Neurol Sci. 2014 Feb 6. pii: S0022-510X(14)00064-1. doi: 10.1016/j.jns.2014.01.040. [Epub ahead of print]

Watson DH, Drummond PD. Cervical Referral of Head Pain in Migraineurs: Effects on the Nociceptive Blink Reflex. Headache, 2014... [Mar 25 Epub ahead of print.] “Our findings corroborate previous results related to anatomical and functional convergence of trigeminal and cervical afferent pathways in animals and humans, and suggest that manual cervical modulation of this pathway is of potential benefit in migraine.”

Yun DJ, Choi HN, Oh GS. 2013. A case of postural orthostatic tachycardia syndrome associated with migraine and fibromyalgia. Korean J Pain. 26(3):303-306. “Postural orthostatic tachycardia syndrome (POTS) refers to the presence of orthostatic intolerance with a heart rate (HR) increment of 30 beats per minute (bpm) or an absolute HR of 120 bpm or more. There are sporadic reports of the autonomic nervous system dysfunction in migraine and fibromyalgia. We report a case of POTS associated with migraine and fibromyalgia. The patient was managed with multidisciplinary therapies involving medication, education, and exercise which resulted in symptomatic improvement. We also review the literature on the association between POTS, migraine, and fibromyalgia.”


~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  Celeste Cooper, RN

Books:
Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 


All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  







Saturday, May 31, 2014

Fibromyalgia - The Past, Present, and Future. Part II — The Present and Future by Celeste Cooper


           
If you missed "Fibromyalgia — The Past, Present, and Future:
Part I —The Past"
 
You can read it HERE!

 
*If you wish to read more on specific topics, there are links to Celeste's website
and blogs that will help give you more in-depth information
and other citations and links to follow.
Just click on the highlighted links.



The Present
                       
According to the National Fibromyalgia and Chronic Pain Association (NFMCPA),  approximately ten million Americans have been diagnosed with fibromyalgia. There is no doubt that awareness has increased over the past few years. Could it be that the FDA approving medications for fibromyalgia and the constant media attention for these medications has done this? Read fellow advocate Cort Johnson's thoughts here, and the results of a survey done by the National Pain Report here.

Even though these medications may not be what we were hoping would work, there is no denying that media attention has raised awareness, despite advertisement for boosting pharmaceutical companies bottom line. Think about the credibility fibromyalgia would have if our families, friends, peers, and even doctors knew there is scientific proof that fibromyalgia is biological syndrome and that it's not all in our heads?

It's coming. Never give up hope!



 
biomarker – a test done on the body that indicates a specific physical trait used to assess the effects or evolution of a disease or disorder.
   
Widely accepted primary symptoms are:

  • Body-wide pain — no longer confined to 18 tender points
  • Non-restorative sleep — not feeling rested even when eight hours are achieved
  • Malaise—lack of zest or energy, fatigue
  • Cognitive deficit —difficulty finding words, adult onset dyslexia, and short term memory problems.


According to the 2013 AltCr (Bennett et al., 2014) other things to consider for diagnosis include;  stiffness and tenderness to touch; balance problems; depression and anxiety; sensitivity to lights, odors, and cold; and symptoms lasting three months or more.

  

I feel very fortunate to have lived long enough to see the FM/a blood test developed, tested, and researched well. Thanks to the determination of the scientists, we now have a biomarker that shows "Unique Immunologic Patterns in Fibromyalgia." (Behm, et al.) This should come as no surprise because of the comorbid disorders.  
   
comorbid  –  pertaining to two or more conditions that occur together more frequently than others.
   
Let's talk a bit about comorbid disorders. Irritable bowel syndrome, widely recognized as comorbid to FM is thought by many to have an immune component and that it is an organic disorder, meaning there is a biological reason that the bowel function is disrupted. Irritable bladder, interstitial cystitis, and other pelvic disorders have been closely associated with fibromyalgia, some autoimmune. Leaky gut syndrome (LGS) has been associated with FM, and we now know LGS plays a role in many autoimmune diseases, even psoriasis.

According to both the National Institute of Health  and the Center for Disease Control  fibromyalgia occurs as a comorbid disorder in rheumatoid arthritis, systemic lupus erythematosus,  and ankylosing spondylosis. These are autoimmune diseases. In addition, did you know that osteoarthritis (thought by some to have a connection to FM) could have an immune component? Research also continues to suggest that thyroid disease  is prevalent in a subset of fibromyalgia patients.

Included in the Wolfe, et al criteria (2010) was a list of  "polysymptomatic and fibromyalgianess" complaints. Though it may not have been intentional, consideration of symptoms without investigating other causes, could suggest that fibromyalgia is a psychosomatic mental illness (now defined in the DSM-5 as somatic symptom disorder). Because of this, it is possible we will not get the tests, diagnosis, and treatments we need. So if you have unusual symptoms that don't respond to treatments or medications, be persistent. If you doctor is not receptive, get a second opinion.
 
Also not a surprise is that the sympathetic (SNS) and the autonomic nervous (ANS) systems may be in on the action. This could explain the involvement of Raynaud's,  IBS,  and irritable bladder.  Raynaud's is thought to occur due to SNS disruption, and both IBS and irritable bladder are thought to have an immune AND sympathetic system involvement.  For all the migraineurs with fibromyalgia, you will be interested to know that migraine may be due a sympathetic nervous system that has gone haywire.

Fibromyalgia has an effect on the autonomic nervous system as evidenced by research on post exertional malaise, postural orthostatic tachycardia syndrome (thought by some to also have an immune component, Li, et al.), and neurally mediated hypotension,  also seen in myalgic encephalomyelitis/chronic fatigue syndrome  (ME/CFS). 
 
All these things might explain why the trigger points of myofascial pain syndrome, a peripheral pain generator in many chronic pain conditions, don't sustain treatment in fibromyalgia patients.
 
The following excerpt is from correspondence I had with Dr. Frederick Wolfe regarding the omission of linking comorbid conditions in the Preliminary Proposed Diagnostic Criteria. 
 
Dr Wolfe stated: I don't share that concern or agree with you. However, the physician can certainly chose to exclude symptoms of known diseases if she chooses. That's why we ask physicians to analyze the symptoms and make a judgment.  You misread the ACR criteria when you write the criteria “define symptoms of several autoimmune disorders to be considered.” The criteria refer to symptoms that are present in humans irrespective of disease. There is no clustering between FM and the diseases and syndromes you cite. FM occurs in all diseases and illnesses, but more often in diseases that cause pain or are worrisome. And it is common in osteoarthritis and back pain syndromes, which are not autoimmune at all.  
Full article here.
   
I take issue with Dr. Wolfe's remarks because fibromyalgia is being used interchangeably with the term centralization/amplification of pain. If this is true, then Dr. Wolfe's comment makes perfect sense. However, in my opinion, fibromyalgia is NOT synonymous with centralization when centralization is considered as amplification of pain. While there is a centralization/amplification component to FM, just like there is with all chronic pain conditions, not all persons who experience chronic pain have primary symptoms of fibromyalgia or the comorbid disorders that have been identified in other research, research that Dr. Wolfe and some others fail to recognize. Also frequently neglected is the presence of myofascial pain syndrome in most, if not all chronic pain disorders. We should not be confused regarding the differences between FM and MPS. (You can watch my interview with Anthony Castelli from my website here. And, you can take a look at the plethora of research to back up my thoughts here. This is purely my opinion, and it could change, but bring me the proof.

Both the NIH and the CDC agree that fibromyalgia is prevalent in certain autoimmune disorders. You can read more on my thoughts on why Dr. Wolfe and his peers are missing important pieces to the puzzle in my blog "A Comprehensive Review on the Proposed and Modified Diagnostics for Fibromyalgia."   
 
The proof is in the pudding


Dr. Wolfe once rebuffed the research of Dr. Albrecht, et al in his blog, Junk Science, Junk Ethics. It will be interesting to see the response to the follow up study on the Behm study, which has been done and is to be published. This follow up study shows the FM/a test is 93% effective in distinguishing fibromyalgia independent of other comparative autoimmune disorders. More importantly, the NFMCPA tells us the NIH will be using the FM/a test  in fibromyalgia studies to verify diagnosis. This means that our future holds the distinction of having a biomarker, just like the other immune disorders that frequently occur with it.
 
Doctors Alan Light and Kathleen Light have been leading studies that show there is a specific "Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome." They believe they are close to also having a biomarker for fibromyalgia, and I understand that Dr. Robert Bennett is doing research along these same lines. 

Therefore, it is with great delight that I say:

"2014 is the year that has proved without a doubt  FIBROMYALGIA IS REAL!"
 
 
What does this mean for the future?
 
In the past, there was no biomarker, nor was there advancing research on genetic expression. 

We can expect:

  • Fibromyalgia will no longer be used as a wastebasket diagnosis (yes, it still happens).
  • We won't have to endure publicized terms such as "Fibromyalgianess."  
  • Improvement of meeting the guidelines for disability benefits.
  • Better tracking by the World Health Organization.
  • Better funding for research into the biology of fibromyalgia.
  • Target rich treatments.

 


While  having a biomarker is important until we find a cure, we will still need to use approaches for coping with chronic illness and pain. Many disorders have biomarkers, such as MS, SLE, RA, diabetes, etc., but these patients still struggle to maintain, and many of them are also fibromyalgia patients. In every case, patient outcome is based on learning to live life the best we can despite illness.
 
My suspicion is that once we understand the pathophysiology behind autoimmune disorders, we will be able to make great strides for prevention. It's not just about us, it's about future generations.

That's what gives us courage, determination, and hope.
 
 

Resources
 
Ahmad J1, Tagoe CE.  Fibromyalgia and chronic widespread pain in autoimmune thyroid disease. Clin Rheumatol. 2014 Jan 18. [Epub ahead of print]
 
Alonso-Blanco C, Fernández-de-las-Peñas C, Morales-Cabezas M, Zarco-Moreno P, Ge HY, Florez-García M. Multiple active myofascial trigger point reproduce the overall spontaneous pain pattern in women with fibromyalgia and are related to widespread mechanical hypersensitivity. Clin J Pain. 2011 Jun;27(5):405-13.
 
American Psychiatric Association (APA) - DSM-5. Characteristics of Somatic Symptom Disorder.
 http://www.dsm5.org/Documents/Somatic%20Symptom%20Disorder%20Fact%20Sheet.pdf (Accessed 5-30-2014).

Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.
 
Bennett RM, Goldenberg DL. 2011. Fibromyalgia, myofascial pain, tender points and trigger points: splitting or lumping? Arthritis Res Ther. 2011 Jun 30;13(3):117.
 
Bennett R, Friend R, Marcus D, Bernstein C, Han BK, Yachoui R, Deodar A, Kaell A, Bonafede P, Chino A, Jones K. Criteria for the diagnosis of fibromyalgia: Validation of the modified 2010 preliminary ACR criteria and the development of alternative criteria. Arthritis Care Res (Hoboken). 2014 Feb 4. doi: 10.1002/acr.22301. [Epub ahead of print]
 
H C Chandola and Arunangshu Chakraborty. Fibromyalgia and Myofascial Pain Syndrome-A Dilemma. Indian J Anaesth. Oct 2009; 53(5): 575–581.PMCID: PMC2900090
 
Cho KI1, Lee JH. The impact of thyroid autoimmunity on arterial stiffness in postmenopausal patients with fibromyalgia. Int J Rheum Dis. 2014 Jan 11. doi: 10.1111/1756-185X.12257. [Epub ahead of print]
 
Cooper C and Miller J. (2010). Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Vermont: Healing Arts Press.
 
da Cunha Ribeiro RP, Roschel H, Artioli GG, Dassouki T, Perandini LA, Calich AL, de Sá Pinto AL, Lima FR, Bonfá E, Gualano B. Cardiac autonomic impairment and chronotropic incompetence in fibromyalgia.  Arthritis Res Ther. 2011 Nov 18;13(6):R190.
 
Fernandez-de-Las-Penas C, Penacoba-Puente C, Cigaran-Mendez M et al. Has catechol-O-methyltransferase genotype (Val158Met) an influence on endocrine, sympathetic nervous and humoral immune systems in women with fibromyalgia syndrome? Clin J Pain. 2014.30(3):199-204.
 
Giovanni Barbara,corresponding author Cesare Cremon, Giovanni Carini, Lara Bellacosa, Lisa Zecchi, Roberto De Giorgio, Roberto Corinaldesi, and Vincenzo Stanghellini. The Immune System in Irritable Bowel Syndrome J Neurogastroenterol Motil. Oct 2011; 17(4): 349–359. Published online Oct 31, 2011. doi:  10.5056/jnm.2011.17.4.349 PMCID: PMC3228974
 
Kitagawa Y, Kimura K, Yoshida S. Spectral analysis of heart rate variability during trigger point acupuncture. Acupunct Med. 2014. [Mar 7 Epub ahead of print.]
 
Küçükşen S, Genç E, Yılmaz H, Sallı A, Gezer IA, Karahan AY, Salbaş E, Cingöz HT, Nas O, Uğurlu H. The prevalence of fibromyalgia and its relation with headache characteristics in episodic migraine. Clin Rheumatol. 2013 Feb 27.
 
Lepus CM1, Song JJ, Wang Q, Wagner CA, Lindstrom TM, Chu CR, Sokolove J, Leung LL, Robinson WH. Brief report: carboxypeptidase B serves as a protective mediator in osteoarthritis. Arthritis Rheumatol. 2014 Jan;66(1):101-6. doi: 10.1002/art.38213.
 
Li H1, Yu X, Liles C, Khan M, Vanderlinde-Wood M, Galloway A, Zillner C, Benbrook A, Reim S, Collier D, Hill MA, Raj SR, Okamoto LE, Cunningham MW, Aston CE, Kem DC.
Autoimmune basis for postural tachycardia syndrome. J Am Heart Assoc. 2014 Feb 26;3(1):e000755. doi: 10.1161/JAHA.113.000755.
 
Light KC, White AT, Tadler S, Iacob E, Light AR. Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome.  Pain Res Treat. 2012;2012:427869. Epub 2011 Sep 29.
 
Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print]
 
Doctors Alan Light and Kathleen Light from the Anesthesiology Department at the University of Utah. Sufferers of chronic fatigue, fibromyalgia have hope in new diagnostic tool.
 
Magdy El-Salhy, Doris Gundersen, Odd Helge Gilja, Jan Gunnar Hatlebakk, and Trygve Hausken Is irritable bowel syndrome an organic disorder? World J Gastroenterol. Jan 14, 2014; 20(2): 384–400. Published online Jan 14, 2014. doi:  10.3748/wjg.v20.i2.384
PMCID: PMC3923014
 
Martínez-Martínez LA1, Mora T, Vargas A, Fuentes-Iniestra M, Martínez-Lavín M. Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. J Clin Rheumatol. 2014 Apr;20(3):146-50. doi: 10.1097/RHU.0000000000000089.
Peroutka SJ. Migraine: a chronic sympathetic nervous system disorder.Headache. 2004 Jan;44(1):53-64.
 
Wolfe F, Walitt BT, Katz RS et al. Symptoms, the nature of fibromyalgia, and diagnostic and statistical Manual 5 (DSM-5) defined mental illness in patients with rheumatoid arthritis and fibromyalgia. PLoS One. 2014. 9(2):e88740.
 
Wolfe F, Brähler E, Hinz A, Häuser W.Arthritis Care Res (Hoboken).Fibromyalgia prevalence, somatic symptom reporting, and the dimensionality of polysymptomatic distress: Results from a survey of the general population. 2013 Feb 19. doi: 10.1002/acr.21931. [Epub ahead of print]
 
Wolfe F1, Michaud K, Busch RE, Katz RS, Rasker JJ, Shahouri SH, Shaver TS, Wang S, Walitt BT, Häuser W. Polysymptomatic Distress in Patients with Rheumatoid Arthritis: Understanding disproportionate response and its spectrum. Arthritis Care Res (Hoboken). 2014 Feb 4. doi: 10.1002/acr.22300. [Epub ahead of print]

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10.
 
Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB: Fibromyalgia Criteria and Severity Scales for Clinical and Epidemiological Studies: A Modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol 38;1113-1122, 2011.

Frederick Wolfe. Fibromyalgianess. Arthritis Care and Research. DOI: 10.1002/art.24553 Article first published online: 28 MAY 2009
http://onlinelibrary.wiley.com/doi/10.1002/art.24553/full
  
Yun DJ, Choi HN, Oh GS. 2013. A case of postural orthostatic tachycardia syndrome associated with migraine and fibromyalgia. Korean J Pain. 26(3):303-306.


"Adversity is only an obstacle if we fail to see opportunity."  Celeste Cooper, RN
Books:
Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 

Website: http://www.TheseThree.com

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All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  


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