Wednesday, September 28, 2011

Weird or Wonderful Comrades: Neurontin and pain in fibromyalgia and myalgic encephalomyelitis

Neurontin® was originally used to treat epilepsy, and later approved to treat diabetic neuropathy, and since has been used for treating fibromyalgia and chronic pain.

It’s efficacy in treating fibromyalgia pain gets mixed reviews.

My concern is the side effects. Neurontin® (gabapentin) functions therapeutically by blocking new excitatory synapse formation in the brain, (Cell), therefore, it could make brain fog worse. The target of any medication should be improve function, and in our case relieve pain and improve cognition so that we can participate in therapy, and interact with others. Many complain of a disconnection with reality when using Neurontin®, I am not sure this is considered improving function.

“You know you have brain fog when you walk back into the same room 5 times and still can't remember what you are doing there, but have that nagging sensation there’s a reason, and you do it several times a day, everyday.”
Since fibromyalgia has been related to central nervous system hypersensitivity, and a centralization effect also occurs in ME/CFS, it makes sense that a drug affecting the brain might help with blocking pain impulses. Fibromyalgia is aggravated by a common co-existing condition called myofascial pain syndrome (MPS), AKA chronic myofascial pain (CMP). This neurological imitator, could also explain some of the myalgias in ME/CFS. The associated neuralgia (nerve pain) is due to the presence of myofascial trigger points. Myofascial therapies and body work is the only thing that will affect a myofascial trigger point. This might help explain why Neurontin® is not as effective for treating pain in some patients.

Because impaired cognition and altered proprioception can be present in both FM and ME/CFS there are some red flags. Concern for impaired reasoning and risk of injury should be considered. Both postural orthostatic tachycardia (POTS) and nuerally mediated hypotension (NMH) are mediated in the brain, and since Neurontin ® crosses the blood brain barrier it is possible it could exacerbate these syndromes.

Improved function is the goal of all therapies and medications. if you are not seeing improvement, see a trained therapist that follows the teachings of Dr. Janet Travell and Dr. David Simons and report any dizziness, feelings of disconnection, worsening in ability to reason, word finding, sudden drops in blood pressure, or palpitations to your doctor. We don’t always have the “usual” side effects.

This blog is based on my answer to “How does Neurontin work to treat fibromyalgia pain?” As Fibromyalgia expert at

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press are for educational purposes and not meant to replace medical advice.


Bou-Holaigah I, Calkins H, Flynn JA, Tunin C, Chang HC, Kan JS, Rowe PC. Provocation of hypotension and pain during upright tilt table testing in adults with fibromyalgia. Clin Exp Rheumatol. 1997 May-Jun;15(3):239-46.

Eroglu C, Allen NJ, Susman MW, O'Rourke NA, Park CY, Ozkan E, Chakraborty C, Mulinyawe SB, Annis DS, Huberman AD, Green EM, Lawler J, Dolmetsch R, Garcia KC, Smith SJ, Luo ZD, Rosenthal A, Mosher DF, Barres BA. Gabapentin receptor alpha2delta-1 is a neuronal thrombospondin receptor responsible for excitatory CNS synaptogenesis. Cell. 2009 Oct 16;139(2):380-92. Epub 2009 Oct 8.

Galland BC, Jackson PM, Sayers RM, Taylor BJ.A matched case control study of orthostatic intolerance in children/adolescents with chronic fatigue syndrome. Pediatr Res. 2008 Feb;63(2):196-202.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

Giamberardino MA, Affaitati G, Fabrizio A, Costantini R. Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia. Curr Pain Headache Rep. 2011 May 5. [Epub ahead of print]
Staud R, Craggs J G, Perlstein W M, Robinson M E, and Price, DD, “Brain activity associated with slow temporal summation of C-fiber evoked pain in fibromyalgia patients and healthy controls,” European Journal of Pain (March

Hubbard JE. Myofascial Trigger Points: What Physicians Should Know about these Neurological Imitators. Minn Med. 2010 May;93(5):42-5.2008).

Ocon AJ, Messer Z, Medow M, Stewart J. Increasing orthostatic stress impairs neurocognitive functioning in Chronic Fatigue Syndrome with Postural Tachycardia Syndrome. Clin Sci (Lond). 2011 Sep 15. [Epub ahead of print]

Staud R. Autonomic dysfunction in fibromyalgia syndrome: postural orthostatic tachycardia. Curr Rheumatol Rep. 2008 Dec;10(6):463-6.

Wednesday, September 21, 2011

Aren’t we a motley crew? The diversity of chronic pain and its relationship to fibromyalgia.

Chronic pain differs from acute pain in that chronic pain has worn out its job as an alarm system, and our body doesn’t send in the firemen to put out the fire. Instead it becomes disrespectful to treatments that otherwise work for an acute pain process. As a result our brain and body shuns input from the autonomic nervous system, especially in fibromyalgia, our brain fails to play nicely.

It appears there are similarities of fibromyalgia to other chronic pain in sharing the phenomenon of pain centralization. Chronic pain becomes diffuse and makes it difficult for the patient to relate their symptoms on the pain scale devised to assess acute pain. There is no tool for assessing chronic pain, but one is greatly needed. I wish the “acute pain 1-10 scale” and questions like, “where do you hurt today?” would go by the wayside. Assessment for response to treatments and medication should be directly related to ability to function. This holds true for all chronic pain patients. Once the pain becomes centralized, the pain scale presently used doesn’t document success or failure of therapeutics and in my opinion is a disservice to the patient.

A recent article “Evidence for Shared Pain Mechanisms in Osteoarthritis, Low Back Pain, and Fibromyalgia” (Staud, 2011) suggests that chronic pain from these sources share the effect of centralization. This means that the peripheral pain input to the brain causes hypersensitivity and the normal orchestration for homeostasis is disrupted. Keywords of the article are peripheral stimulation and centralization. Where there are diseased joints or vertebrae pulling on muscle, myofascial trigger points can develop. We know myofascial trigger points occur at an alarming rate in fibromyalgia, activation requires little stimulation, but they can occur in any person, any sports medicine specialist will tell you MTPs are not specific to fibromyalgia.

Management of fibromyalgia includes identifying aggravating and perpetuating factors. This includes bringing co-existing conditions under control, including the presence of myofascial trigger points, metabolic disturbances, sleep dysfunction, anxiety, restless leg syndrome, multiple chemical sensitivities, migraine and other comorbid conditions.

Centralization of pain is part of the chronic pain process and we need to do as much as we can to diminish harmful input to the brain that keeps it in this sensitized state. This should include treating the centralization in the brain itself, and bringing pain under control by whatever pain measures work for one particular patient.

This blog is based on the question and my original answer to “How is fibromyalgia related to chronic pain,” at ShareCare.

View my other answered questions as fibromyalgia expert

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.


A. M. Abeles, M. H. Pillinger, B. M. Solitar, and M. Abeles. Narrative Review: The Pathophysiology of Fibromyalgia. Ann INter Med. May 15, 2007 146(10):726-734

Affaitati G, Costantini R, Fabrizio A, Lapenna D, Tafuri E, Giamberardino MA.Effects of treatment of peripheral pain generators in fibromyalgia patients. Eur J Pain. 2011 Jan;15(1):61-9.

A. M. Castro-Sanchez, G. A. Mataran-Penarrocha, N. Sanchez-Labraca, J. M. Quesada-Rubio, J. Granero-Molina, and C. Moreno-Lorenzo. A randomized controlled trial investigating the effects of craniosacral therapy on pain and heart rate variability in fibromyalgia patients. Clin Rehabil January 1, 2011 25(1):25-35

D. Clauw, M. Schmidt, D.Singer, A. Singer, P Katz∗, J. Bresette
The relationship between fibromyalgia and interstitial cystitis. Journal of Psychiatric Research. Volume 31, Issue 1, January-February 1997, Pages 125-131

J. E. Helms and C. P. Barone. Physiology and Treatment of Pain. Crit Care Nurse December 1, 2008 28(6):38-49

Kindler LL, Bennett RM, Jones KD. Central sensitivity syndromes: mounting pathophysiologic evidence to link fibromyalgia with other common chronic pain disorders. Pain Manag Nurs. 2011 Mar;12(1):15-24. Epub 2009 Dec 2. Review.

R, Staud. Evidence for Shared Pain Mechanisms in Osteoarthritis, Low Back Pain, and Fibromyalgia. Curr Rheumatol Rep. 2011 Aug 11. [Epub ahead of print]

S. Tang, H. Calkins, and M. Petri. Neurally mediated hypotension in systemic lupus erythematosus patients with fibromyalgia. Rheumatology (Oxford) May 1, 2004 43(5):609-614

Friday, September 16, 2011

Volcanic Activity: What we should know about cellular healing in fibromyalgia and myalgic encephalomyelitis

Repeated research suggests there is deregulation of the hypothalamus-pituitary-adrenal axis (HPA) in FM and ME/CFS, cavalcading a dysfunctional cortisol release.

Cortisol, the stress hormone, responds to both physical and emotional stress. Our brains are powerful tools, and we know it helps us think but it is also affected by what we think, what we do, and how we react to physical and emotional stressors. The key is to identify our perpetuating factors and manage symptoms as best we can.

Micro cellular healing takes place during sleep; hijacked because of prevalent sleep dysfunction. Though the disruptions are thought to be different between fibromyalgia and myalgic encephalomyelitis patients, it is present in both, and impairs micro healing. Treating sleep with good sleep hygiene, (discussed at length in chapter 4) sleep routine is important, but many times the FM and ME/CFS patient needs help. Discuss your sleep problems with your physician, there are medications to help in addition to behavior changes. Will treating sleep cure you, no, but it will help with your ability to cope.

Sneak Peek: My body is Matter and It Matters, “Improving sleep.”©

Sleep retraining may be indicated when your internal clock is off kilter. Melatonin is a brain chemical produced when the brain receives a signal from the eye that daylight is ending. In contrast, when your brain perceives the light impulse, melatonin production shuts down and
allows you to awaken. This is why it is important to maintain regular sleep

Preparing for bed: ………………….(Cooper and Miller, 2010)
Identifying known physical and emotional stressors is the first step, but so is managing comorbid or co-existing conditions.

Positive feedback to the central nervous system is important for homeostasis and well-being. This includes treating the peripheral pain generators, myofascial trigger points, prevalent in FM, and viral or other known perpetuators in ME/CFS. Addressing life in a more positive manner can be difficult to do without help when are mired down in pain, fatigue, and cognitive dysfunction.

Sneak Peek: Crisis Management—Dealing with Major Life Events, Chapter 6, “Dealing with Circuit Overload” ©

1. We forget we are on a team. ….
2. Focus on the doable, not the impossible…
3. Things Take Time (TTT). Get this engraved on your watch crystal or the back of your cell phone….
4. Some things can’t be fixed….
5. In Chinese, the symbol for “crisis” literally translates as “dangerous opportunity.”…
6. “Get mean.” Understand that light and dark, rain and shine, birth and death are two sides of the same dance……. (Cooper and Miller, 2010)

“Initially we struggle to accept, and we may backslide from time to time, but acceptance is key to forward momentum, coping, and energy to define and defend our new life.” --Celeste Cooper

This blog is based on my original answer at ShareCare, What can I do to improve my fibromyalgia? View my other answered questions as fibromyalgia expert

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press
Direct links at


Castro-Sanchez AM, Mataran-Penarrocha GA, Granero-Molina J et al. 2011. Benefits of massage-myofascial release therapy on pain, anxiety, quality of sleep, depression, and quality of life in patients with fibromyalgia. Evid Based Complement Alternat Med. 2011:561753.

Crofford, E. A. Young, N. C. Engleberg, A. Korszun, C. B. Brucksch, L. A. McClure, M. B. Brown, and M. A. Demitrack, “Basal circadian and pulsatile ACTH and cortisol secretion in patients with fibromyalgia and/or chronic fatigue syndrome,” Brain, Behavior, and Immunity 18, no. 4 (2004): 314–25.

E. Kasikcioglu, M. Dinler, and E. Berker, “Reduced tolerance of exercise in fibromyalgia may be a consequence of impaired microcirculation initiated by deficient action of nitric oxide,” Medical Hypotheses 66, no. 5 (2006): 950–52.

S. B. McMahon, W. B. Cafferty, and F. Marchand, “Immune and glial cell factors as pain mediators and modulators,” Experimental Neurology 192, no. 2 (2005):444–62.

K. J. Maher, N. G. Klimas, and M. A. Fletcher, “Chronic fatigue syndrome is associated with diminished intracellular perforin,” Clinical and ExperimentalImmunology 142, no. 3 (2005): 505–11.

M. Martinez-Lavin, “Biology and therapy of fibromyalgia. Stress, the stress response system, and fibromyalgia,” Arthritis Research & Therapy, no. 4 (2007): 216.

Mense S. 2010. How do muscle lesions such as latent and active trigger points influence central nociceptive neurons? J Musculoskel Pain. 18(4):348-353.

H. Moldofsky, “The assessment and significance of the sleep/waking brain in patients with chronic widespread musculoskeletal pain and fatigue syndromes,” Journal of Musculoskeletal Pain 15 Suppl. no. 13 (2007): 4 [Myopain 2007 poster].

Kishi A, Natelson BH, Togo F et al. 2010. Sleep stage transitions in chronic fatigue syndrome patients with or without fibromyalgia. Conf Proc IEEE Eng Med Biol Soc.1:5391-5394.

Wieseler-Frank, S. F. Maier, L. R. Watkins, “Glial activation and pathological pain,” Neurochemistry International 45, no. 2–3 (2004): 389–95.

Monday, September 12, 2011

Legs come to me, be still: Fibromyalgia and Restless Leg Syndrome are they Bed Buddies?

If you have restless leg syndrome (RLS) you understand the creepy crawly sensation, the inability to keep your legs still, the nocturnal interrupter of peace and sleep, the unwanted bed buddy.

Restless leg syndrome, like fibromyalgia is believed to be caused by a disruption in the central nervous system. It frequently occurs with FM and is considered in the preliminary proposed criteria for diagnosing FM. Though not generally considered painful, it is quit annoying and rears its ugly head in the evening and bedtime hours.

Like many centralization disorders, RLS most likely has a myofascial component which initiates the event and disturbs the normal nighttime neurotransmitters (messengers to and from the brain), interrupting our normal stages of sleep. You know, the ones we don’t get, the ones that keep us from feeling refreshed even if we do sleep eight or nine hours.

Check it out:

Massage your legs; see if you feel any bumps that hurt when you press on them. If you do feel a trigger point, massage it with short strokes in one direction, holding about 80%pressure as you do. Because of the central nervous system component, the presence of trigger points may be an aggravating factor not only to FM, but to RLS also.
Periodic Limb movement (PLM) is its cohort. You may wake yourself in the night because of it, and these jerking, kicking, tear up the sheets movements are looked for in a sleep study. Periodic limb movement interferes with sleep quality and disrupts the sleep cycle, or it could be the other way around, the out of balance brain chemicals makes us move our legs in sleep 100's of times. Either way, if you have RLS you should have a sleep study done to “check for PLM.” You can have PLM without RLS, but frequently they are in cohabitation.

There are medications to treat RLS/PLM, some are affective, some not. We are all different, and just as a patient with hypertension, you might have to try several different ones, from several different classes of drugs before you find one that helps you. Paradoxically, some medications can cause RLS, and medications used to treat RLS may interfere with other medications you are taking . Be sure to talk this over with your doctor and pharmacist.

Harmony and Hope, Celeste

This blog is based on my original answer as fibromyalgia expert at ShareCare to the question, "Is Fibromyalgia Related to Restless Leg Syndrome?” View other answered questions on my profile at


Viola-Saltzman M, et al High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study. Journal of Clinical Sleep Medicine ,2010; 6: 423-427.

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. Rheumatol. 2011 Feb 1. [Epub ahead of print]

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.

Tuesday, September 6, 2011

Fatigue: Not all symptoms are attributed to fibromyalgia

Fatigue is a common symptom of fibromyalgia; however, it can be caused by comorbid conditions, disorders that occur more frequently in FM. These might include hypothyroidism, nuerally mediated hypotension, postural orthostatic tachycardia, depression, or sleep disorder (including lack of slow wave progression.) Fibromyalgia can coexist with myalgic encephalomyelitis too.

It is important to know if you have a condition accompanying fibromyalgia that causes fatigue so it can be appropriately treated. For instance, you may have a co-existing condition (one that doesn't necessarily occur at a higher rate in FM) that causes fatigue, such as adrenal disease, anemia, mononucleosis, Lyme’s disease, narcolepsy, infection, heart disease, diabetes, hypoglycemia, insulin resistance or other metabolic/endocrine disease. There are a plethora of disorders that can cause fatigue.

Medications or drug interactions can also be the culprit. All of these should be ruled out or ruled in so appropriate action can be taken.

Be sure to report to your doctor if you also have:
• Anxiousness or feeling blue
• Blood in your stool or urine
• Breathlessness
• Changes in your stool
• Changes in your skin
• Chest Pain
• Dizzyness
• Excessive thirst and urination
• Fall asleep suddenly while doing a task
• Fainting when standing up too quickly
• Fever
• Flu-like symptoms that don’t go away
• Hair loss
• Heart rate changes, such as slow or palpations when you change positions
• Insomnia
• Lightheadedness when you bend over
• Night sweats
• Pale mucous membranes in the nose and mouth or skin
• Shortness of breath
• Started a new medication or supplement
• Swelling of the hands, feet or face
• Swollen lymph nodes
• Weight change

Keep a log of ALL your symptoms, not just those listed here. There are many helpful forms in our book for tracking and reporting symptoms, communication with your doctor, and providing documentation for your medical record. Use the tools to help track the benefits of new medications and treatments. All of these are important for you and your doctor or other healthcare provider.

This question is based on my original answer at ShareCare, “How Do I Know If My Fatigue Is Caused By Fibromyalgia?”

View my other answered questions as fibromyalgia expert

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.

Thursday, September 1, 2011

Exercise with FM and ME/CFS, claiming your domain.

Exercising when you have fibromyalgia is the epitome of right kind, amount, and time. So, what is too much, and what is enough? Stretching and aerobic exercise are a must, but going too fast or trying to exercise a muscle riddled with myofascial trigger points (see ) will only set you back, give you feelings of defeat and most likely cause you to quit.
Start low and go slow.

Exercise when you have chronic fatigue syndrome (ME/CFS) can cause more harm than good. Older studies have suggested a step program, however, if in a flare or if you are confined to bed, we now know it is contraindicated, and puts the already stressed out immune system in haywire mode. Movement should be based on tolerance. Know your body and its experiences from previous flares, move when you can to prevent atrophy of your muscles. There are many exercises that can be done in bed or with the assistance of a care giver.

Finding the right fitness routine for you is important; imagine the oil lubricating stiff muscles allowing them to flow freely as you move, instead of jerking and resisting one another like a sputtering car nearly on empty. In FM and ME/CFS, we do not seem to fit in our space, (lack of proprioception) walk into things, etc. so use care. Some days aren’t as good as others, identify perpetuating factors, such as trying to work in a routine on a physically or emotionally challenging day. Blame driven exercise is NOT productive. Heed the warning signs.

Certain times of the day have been identified; generally, the best time is late morning, early afternoon. Do your movement during your peak hours and not before going to bed. “If you drain your car battery completely, you cannot get enough energy to recharge it. The body, mind, and spirit work much the same way.” (from Integrative Therapies…..)

Remember, you are not in a marathon, doing more on Monday to make up for a Sunday is disaster. If exercise is a nasty word for you exchange the word with movement. T’ai Chi, stretching, walking, or bouncing on a yoga ball are all good ways to increase movement. It is important to enjoy the type of movement you select so you will stick to it.

"My second favorite household chore is ironing. My first being hitting my head on the top bunk until I faint."--Erma Bombeck
This blog is based on the question, What if my fibromyalgia causes too much pain to exercise? my original answer as fibromyalgia expert at ShareCare. View other answered questions on my profile at

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press, and is not meant to replace medical advice.

Celeste's Website

Celeste's Website
Click on the picture