I'm not sure what your time frame is for defining "new", however, Dr. Jacob Teitelbaum has, in the last couple of years, added D-Ribose to his treatment protocol (5 g/day). I've just started using it myself and am finding it helpful for energy. Also very helpful for energy, though again not perhaps "new", is Co-Enzyme Q10 (100 - 900 mg/day). Both of these supplements are thought to support mitochondrial function. What I notice in my response to them is that as my energy level rises, my pain level moderates.

Thank you for your input. I meant new as being within the last five years.

Personally, I have used wheat grass juice, bee propolis, juiced fruits and vegetables, such as kelp, beets, carrots, apples, grapes, watermelon, celery, ginger root, lemons, and limes. I will keep your recommendations in mind when I try new supplements.

Hi Susan, my research group focuses on exercise intervention. Several studies show that is an effective way to decrease the severity of symptoms. If you are interested, an example is: http://www.hindawi.com/journals/ecam/2012/614196/abs/

I hope this information would be useful for you.

All the best.

I would suggest reviewing the article Mitochondrial Myopathy Presenting as Fibromyalgia: a Case Report which has a protocol of non-pharmaceutical supplementation that resulted in a resolution of FM symptoms. http://www.jmedicalcasereports.com/content/6/1/55 It would bear further research into whether FM is actually a disease of mitochondrial dysfunction (either acquired or inherited) and/or if a portion of sufferers with FM have an incorrect diagnosis. In the scientific literature can be found research on the presence of ragged red fibers found via muscle biopsy in some people with FM and is also a clinical feature in cases of mitochondrial myopathy. Interestingly the non-pharmaceutical supplementary protocols that seem to benefit FM sufferers are also used to help those with mitochondrial myopathy. I don't believe this is a coincidence. Another correlation is that there is a 2:1 ratio of women to men who have FM. Could this be related to the fact that any defects of the mitochondrial genes within mtDNA inherited solely from the mother might express more often in female offspring? One other parallel seems to be the problem with exercise intolerance in both cases of FM and those with disorders of mitochondrial function.

I agree with Walt Morrey's comments that deep tissue massage is counter-productive when it is too painful, causes more damage and more pain leading to over-facilitation of the nervous system which then makes treatment unsuccessful as muscles lock up and can set back someone with FM for weeks or months. Part of the dilemma with FM is that the nervous system is already receiving a lot of pain signals so the last thing to do is to be the cause of more.

The body can be over-stimulated by too aggressive a massage approach and causes more trouble as the body already has built in compensations to cope with the dysfunctions at hand that when disturbed can thereby exacerbate the situation. Something such as a painless deep tissue massage could be very beneficial as it would help calm down the neuro-muscular over-activity and help restore normal function.

There can be dysfunctions at various levels: fascia, muscle, skin, tendons, ligaments including visceral that can cause displacement of organs out of the normal anatomical position which in turn stresses other areas. The location of the most pain may or may not be the originating area of dysfunction but as the problems remain unaddressed can involve many areas. If those with FM have had falls or motor vehicle accidents, then sudden forceful forces acting on the body can cause organs to shift enough to cause what seems like muscular pain, but it originates as a result of the displacement. For example: falling down hard on one side of the body can cause shifting of lower abdominal organs such as bladder and uterus. Such shifting can result in changes to continence and lower back or non-specific pelvic pain.

The only effective treatment that addresses visceral involvement that I know of is Osteopathic technique which is well tolerated and not painful. Overall, a combination of physical therapies may be needed that help get to the core of any soft tissue dysfunctions is of great help to FM sufferers and as mentioned should be gentle yet effective and definitely not aggressive.

I personally vote for the mitochdrial treatment using ribose, Q10, carnitine and the B-complex.This is because the mitochondrial impairment is set off not only in the musculature but also in other parts of the body, relating to the wide interindividual difference of symptoms. The trigger of all this ? Our daily consumption of chemicals such as aspartame, sodium glutamate, BPA, GMOs, triclosan in health care products, Al-salts in antiperspirants etc just to name a few. Thus, detox the patient at the same time is a necessity

Thank you for your comments.

Yes. I do believe in detox. Wheat grass and kale work well for detox, also.

Jan, thank you very much for pointing out this very interesting and valuable research. It appears to have been around for ages and yet because it cannot be pharmaceutically patented has stayed out of the limelight as a sensible treatment of pain conditions such as fibromyalgia. I did some further digging and found out that PEA reduces the expression of cyclooxygenase-2 (COX-2) and inducible nitric oxide synthase (iNOS) and prevents IkB-alpha degradation and p65 NF-kappaB nuclear translocation, the latter related to PEA as an endogenous PPAR-alpha agonist.

Clearly all of this helps reduce inflammation as research into Curcumin has shown which has effects on similar pathways. What is exciting about PEA is that it is an endogenous molecule that is both analgesic and anti-inflammatory which additionally helps turn down nociceptive pain signals and feedback that otherwise can overwhelm a person with fibromyalgia and their ability to cope with the pain signals that from what I have observed seems to lead to hyper-algesia. Again from what I have observed, current treatments have been largely ineffective at getting to the root of the problem and really has left many patients with fibromyalgia untreated or at best not very effectively treated.

The work of Dr Martin Pall PhD in his textbook Explaining Unexplained Illnesses builds a hypothesis for the up-regulation of pain in fibromyalgia as being a vicious cycle of biochemical up-regulation which includes NF-kB, iNOS, peroxynitrite among others. Therefore it is not surprising that PEA that appears to hit on regulation of such molecules and has been shown to be very effective in modulating the pain cycle of fibromyalgia, neuropathic pain etc.

It is becoming clear now that the medical research into the various conditions such as fibromyalgia, that does not fit neatly into our current medical paradigm, needs to be treated through supplementary routes like PEA and others that have been effective at addressing mitochondrial dysfunction. All of these are non-pharmacological supplements that address the various molecular imbalances where drugs seem either limited or non-effective for fibromyalgia sufferers.

Just a thought: I would like to see a way for sufferers of these kind of maladies to be covered under health insurance plans for non-pharmaceutical supplements when they are the frontline treatment for a condition. But the traditional pharmacological coverage is the only thing the plans currently will pay for.

All of these supplements have to be paid for by the patient. Why should one person's treatment for their disease be covered under plans and another's not be? A shift in the medical paradigm is needed and I hope researchers around the world can be at the forefront in bringing about change in this area.

Thank you for your input. I am looking at a holistic fibromyalgia program that incorporates cognitive, herbal, homeopathic, and meditative aspects. I would like to do some research before I could recommend the protocol.

First, let me say that I am not a scientist. I'm a writer, and a fibromyalgia patient who has had to find non-pharmacologic treatments because I don't have insurance. Through a great deal of research and experimentation (using a challenge/re-challenge protocol,) I've found ways to reduce my pain levels and manage my symptoms.

One of the most important things I've discovered is that minimizing chemical exposure as much as possible helps immensely. Eliminating aspartame reduced my pain levels by at least 25%, and avoiding MSG also helps. I've also started making my own cleaning products using non-toxic or minimally toxic ingredients like baking soda, vinegar, essential oils, castile soap, borax, and washing soda.

I use a lot of herbal treatments to manage symptoms as well. I use ginger, turmeric, skullcap, hops, and gotu kola on a regular basis, and other herbs "as needed." I also use several essential oils including lavender, rosemary, chamomile, and tea tree on a regular basis; and plan to experiment with others as I can afford to get them. I've experimented with several supplements as well, such as AlphaLipoic Acid, Acety.-L Carnitine, Bromelain and others; but can't afford to take them regularly. Magnesium citrate is one of the few that I take daily, because it makes the biggest difference for me (and there are quite a few studies showing that fibromyalgia patients tend to have low magnesium levels.)

For anyone who is interested in finding research on natural treatments, I've found an excellent website that links to studies called GreenMedInfo (www.greenmedinfo.com) If an herb, supplement, or essential oil has been studied; you can probably find it on that site.

I actually feel better, have fewer symptoms, and lower pain levels now than I did when I was on multiple medications.

Several interesting suggestions have been proposed ianswering your question. However, after a rapid rand superficial eview of the answers I am surprised that it seems that no-one suggest to follow the evidence-based guidelines. There are agreement in the guidelines devloped in Canada (Ottawa) published in Physical Therapy as well as European guidelines developed by an EULAR group exercise, patient education and cognitive behavioral therapy should be the choice. One can argue, however, that these therapies are better to improve functioning and limit disabilitty, but according tp the guidelines these modalities are also recommended for pain reduction and pain management.

Anne Mengshoel - From my personal experience, patient education is THE most important factor in quality of life. (I don't know about CBT, since without insurance, I don't have access.) However, the issue I've found is that, at least in the US, the medical professionals that treat fibromyalgia tend to know less about what works, what doesn't, and what the latest research says than the patients do.

For example: One doctor told me that I had to go out and start exercising. This is actually great advice, on days that I move around more, I feel better. The problem is, his version of exercising was, "you have to start walking at least a half mile three times a week." Sorry, that's not physically possible to start off with. I started with 5 minutes of walking and was told I was "just lazy," and that I had to push myself. "Pushing through it" did nothing but throw me into flares, which made it impossible to do ANYTHING for days or weeks afterward. (Following my own method of starting slow and adding as I was able, on the other hand, has gotten me to the point that I AM now able to walk a half-mile at the time. I can walk that far, work a job that requires me to spend 5 to 8 hours a day on my feet, then walk another half-mile home 5 to 7 days a week. It's not comfortable, but I can do it when I have to.)

Another doctor told me that I couldn't exercise at all, and that I would just have to accept that I would eventually be completely disabled.

I didn't find out about the idea of pacing until I started participating in patient groups and researching for blog posts and articles. Much of the "patient education" provided focuses entirely on what pills you should be taking and how to reduce the amount of energy used, with no mention of the fact that if you stop doing things that are uncomfortable, before long you won't be able to do them at all. The patient education I received from the medical profession nearly made me a complete invalid. On the other hand, the "patient education" I've gotten from "Dr. Google" and other patients has been a lifesaver.

My most recent experience with doctors was even less helpful. I went to the local "charity hospital" and was referred to a rheumatologist who refused to treat me because I won't take SSRIs or SNRIs. My experience with both has been horrible, and with so many other options available, this kind of physician bullying is both unethical and uncalled for.

I hope that the situation has changed since I've been unable to access healthcare, but from the stories I hear in the patient groups I participate in, I don't think it has.

Thanks for responding to my comments. It is of great interest to me to learn what are the practices in US, and especially as the evidence-based clinical guideline was actually published in an American Journal. I understand there are differences between what is recommended and what is practised. In Norway, my experience is that health providers in a greater extent are accepting fibromyalgia - and they are great consumers of physiotherapy services. One explanation of different practises might be the Health Insurance systems. It is not difficult for people with fibromyalgia to get access to Health services, and I do think that today that the patients get the advice from physicians to stay active - start with what you can manage at the time and add slowly to it.

Anne Mengshoel :

great answer, cannot agree more.

To my personal opinion, especially in fibromyalgia syndrome (FMS) it is necessary to clearly distinguish personal beliefs, subjective interests, anecdotes and ongoing waves of one-dimensional "explanations" ("the" virus/bacteria, "the" molecule/ "the" environmental factors and so on and so on...) that ´without any doubt´ "cause" FMS from evidence-based knowledge. In order to protect patients from senseless therapies and harm (primum nil nocere!) , and, last not least, the private and public purse from wasting money, the consideration of evidence-based guidelines is one of the best ways to come to an reasonable individual decision. In Germany, the S3-guideline concerning "fibromyalgia syndrome" has been published in 2012 (http://www.awmf.org/fileadmin/user_upload/Leitlinien/041_D_Interdisziplinaere_V_fuer_Schmerztherapie/041-004le_S3_Fibromyalgiesyndrom_2012-04.pdf), and there is also a patient guideline available (unfortunately only in German). Against this background, informed patients can know that - up to now - "current data do not identify distinct etiologic or pathophysiological factors mediating development of FMS. The development of FMS is associated with inflammatory rheumatic diseases (EL2b), with gene polymorphisms of the 5-hydroxytryptamine (HT)2receptor (EL3a), lifestyle factors (smoking, obesity, lack of physical activity; EL2b), physical and sexual abuse in childhood and adulthood (EL3a)". Thus, "FMS is most likely the result of various pathogenetic factors and pathophysiological mechanisms".

Concerning "physiotherapy and physical agent therapies for fibromyalgia syndrome" the guideline clearly states: "Low to moderate intensity aerobic exercise and strength training are strongly recommended. Chiropractic, laser therapy, magnetic field therapy, massage and transcranial current stimulation are not recommended". And: "The use of multicomponent therapy (the combination of aerobic exercise with at least one psychological therapy [especially CBT]) for a minimum of 24 h is strongly recommended for patients with severe FMS". Concerning pharmacological treatment, "amitriptyline and—in case of comorbid depressive disorder or generalized anxiety disorder—duloxetine are recommended. Off-label use of duloxetine and pregabalin can be considered in case of no comorbid mental disorder. Strong opioids are not recommended". Focusing complementary and alternative therapies for fibromyalgia syndrome, the guideline states: "Meditative movement therapies (qigong, tai chi, yoga) are strongly recommended. Acupuncture can be considered. Mindfulness-based stress reduction as monotherapy and dance therapy as monotherapy are not recommended. Homeopathy is not recommended. In a minority vote, homeopathy was rated as “can be considered”. Nutritional supplements and reiki are not recommended".

Michael Noll-hussong

Thanks for citing the German recommendations which I find very interesting. Importantly, they seem to be more explicit and nuanced in their recommendations than those I cited. Especially with regard to fibromyalgia, patients are at risk to be offered several kinds of therapies with no or little scientific support. However, I can see that there are several therapies not yet been studied that might be effective. Nevertheless, I think there are several therapies that is hard to understand why should be efficient. This makes the patients wasting their time and sometimes also probably get worse. Thus, it is of great interest that it also exist a German guideline available for patients.

There is emerging evidence that fibromyalgia might be connected to certain dietary elements. Fibromyalgia was originally included in Hudson and Pope’s Affective Spectrum Disorder concept. They proposed that fibromyalgia and other common brain disorders might somehow be connected by a shared pathology. We now believe that these conditions are tied to common metabolic disorders like insulin resistance, obesity and type II diabetes. We now call this condition Carbohydrate Associated Reversible Brain syndrome or CARB syndrome.

CARB syndrome seems to be triggered by long term exposure to processed foods. The brains of people with CARB syndrome don’t filter properly so they end up feeling all the background signals—more of less like static on a radio. They end up with diffuse pain and all their sense become hypersensitive because of this lack of proper filtering. The most effective treatment is eliminating typical processed food.

Several biological changes have been associated with fibromyalgia during the years. However, it is still uncertain whether they are causes or consequences of having long-standing pain, or merely being aggravating factors. Anyway, a healthy life-style including diet and physical activity are certainly important to improve well-being in most chronic illnesses - also fibromyalgia. Some years ago, my collegue and I interviewed women previously suffering from fibromyalgia that had at the time of the interviews got rid of it. Their stories about what they thought were important for their recovery also suggest that diet, reinterpreting the meaning of pain(from sign of bodily harms into a barometer of stress in life) and modification of everyday life were important for their recovery. (paper published in Disability and Rehabilitation 2004; VOL. 26, NO. 1, 46–53). .

Recovery from fibromyalgia is scarce but a rather well known phenomenon. Some researchers underline that recovery seem to be a transitory state. Other researchers have identified recovery from fibromyalgia in thoroughly diagnosed community samples of children or in sufferers with slighter symptoms. I have also been involved in research on recovery from fibromyalgia and what we found was that recovery from fibromyalgia seems to be a recovery "on parole" meaning that the symptom free state had to be safe guarded through ways of living and conditions of life.

A related phenomenon is longer or shorter breaks from pain -”pain gaps". Recovery and pain gaps also show meaningful similarities as far as I can see. Breaks from pain are known to occur in about one third of sufferers and daily breaks in about 15 percent.

One may of course question whether patients who have become healthy from fibromyalgia really had fibromyalgia in the first place. However, in our patients they had been diagnosed by a specialist who had included them into my prior studies about fibromyalgia. Thus, in that case it seemed rather reasonable that they did not differ from the other patients included in these studies - this impression is supported by what I recognized when I later looked into the data of prior studies. Nevertheless, this raises an adequate question about the validity of the diagnostic criteria.However, I have been met by several people, both clinicians, researchers and patients, who are doubting that it is possible to recover from fibromyalgia. It is interesting that when the patients are ill they are regarded that their illness is imagined, and when they have recovered they might be considered to have been either imagined healthy or considered to be healthy all the time. Perhaps, it might rather be the assumptions of the medical society that is wrong?. In spite that it is unexplainable from a medical point of view it might not be a miracle that it is possible to recover from fibromyalgia .

I am very active in the chronic illness community, and have hundreds of aquaintences and friends who have been diagnosed with fibromyalgia. Most of the "recoveries" I've seen among my friends have actually been "remissions." There are many cyclical diseases/disorders that include remission of symptoms for some period of time, whether those remissions are caused by treatments (and end when the treatment protocol is no longer followed) or are due to unknown causes.

Any recovery that must be maintained by strict adherance to a particular way of living, a particular diet or exercise program, or any other lifestyle change or "treatment" is not a true recovery, but a remission of symptoms.

Perhaps if those in the medical community could set aside their predjudices and actually examine fibromyalgia as a "real" illness, rather than assuming that it is psychological in nature, or imagined, or something else entirely; it would start to make more sense . . .

In the United States there has been very little evidence-based research on the benefits of CranioSacral Therapy with fibromyalgia. I am attaching a link for a Spanish study conducted demonstrating significant improvement in pain levels up to one year after treatment.

http://www.ncbi.nlm.nih.gov/pubmed/20702514

Our group is working with different interventions based on exercise in the last 4-5 years. Now we are involved in a huge project based on the treatment of fibromyalgia through exercise (http://www.ncbi.nlm.nih.gov/pubmed/22336292) . Under our experience, the Tai-Chi practice, as well as multidisciplinar interventions with exercise in warm water obtained the major improvements on symptomatology and quality of life in these patients. Find below some examples (request me the full text if neccesary)

http://www.ncbi.nlm.nih.gov/pubmed/24203799

http://www.ncbi.nlm.nih.gov/pubmed/20542976

http://www.ncbi.nlm.nih.gov/pubmed/23348113

http://www.ncbi.nlm.nih.gov/pubmed/23258608

http://www.ncbi.nlm.nih.gov/pubmed/22649476

http://www.ncbi.nlm.nih.gov/pubmed/22243556

http://www.ncbi.nlm.nih.gov/pubmed/21406488

http://www.ncbi.nlm.nih.gov/pubmed/21348799

http://www.ncbi.nlm.nih.gov/pubmed/21058885

I totally agree with what you write regarding multidisciplinar interventions. From my point of view it seems as though interventions need to compensate for dysregulated stress responses through several "gateways". In a study that I made a few years ago concerning breaks from pain in fibromyalgia this was an obvious pattern. The women that I interviewed regarding "pain -gaps" related that the gaps occured in a context of either physically favourable conditions (paced exercise or warmth) or more often in a context of environmentally regulated relief from stress (closeness to partner, socialising , a vacation away from home etc).

www.degruyter.com/view/product/205804‎

..check for gluten sensitivity, however, consider that this kind of sensitivity involves autoimmune reactions without any intestinal signs. You will see changes in your lab work such as the antigliadin antibody test (for more info see Lab Cyrex Array 3 & 4). Forget the other common tests for gluten made in the clinical lab they all show up neg. Thus, a number of brain issues (due to these antibodies with silent inflammation) can possibly be related to gluten sensitivity. If no such test is available just put the pat on a gluten-free diet for 2 months and observe any effect. Especially in FMS keep an open mind because there is data starting to explode andf people are just starting to publish. Besides there is no such simple thing as chnaging the diet with no med. involved

Fibromyalgia is multifuctorial in nature and there is a big variation how patients respond to different treatments. I have seen excellent effect of biofeedback, hot pool, low energy exercises/stretching. jacuzzi, chiro, physio, acupuncture, massage help patients. Nothing works as a magic, so I suggest trying one by one, to detect which one helps more.

1. Continuous activity like walking, aquajogging or whatever is preferred: being active not against pain but for living well with pain.

2. Being aware of dysfunctional stress.

3. avoiding medicalisation.

Biofeedback, relaxation techniques, physical activities, yoga - all can help

I fully agree that patients with fibromyalgia respond rather differently to both pharmacological and non-pharmacological treatments. But I would suggest to try out the therapies being recommended first. I highly agree with dr Schittenwolf in his way of ranging therapies, and most of all his statement that being active is not mainly a palliative treatment, but a health promoting behaviour.

I have to be aware that medicalisation worsens many chronic pain conditions.

Feelings are based upon our perceptions. We can not change how we feel unless we change our perceptions. Our perceptions, in turn, depend upon what we think (beliefs, attitudes, expectations). If we are willing, we can change what we think through CBT techniques and many patients improve functionality- recreational, vocational sphere without necessarily changing their self reported pain measures. Other researchers, (see Ken Griffiths ) have found that self efficacy is important in predicting multiple outcomes in patients with a variety of chronic illness.

Ultimately, many patients will feel better, despite our ability to detect the improvement with a surrogate marker. Mosts patients prefer that outcome, than an intervention leading to improvement in a surrogate marker (think bone density) and no improvement in outcome (think fracture)

As for any chronic disease, the treatment approach has to be individualized. The non pharmaceutical treatments with more volume of evidences are exercises, in special, aerobics (in my opinion it shall be associated with other modalities) and cognitive behavioral therapy. Although, the ideal would be a multiprofessional team, the decision to prescription has to take in account the individual patients characteristic and the access of patients to medical attention.

In peer-reveiewed research published by Behm, et al in BMC Clinical Pathology and per a subsequent study of nearly 500 patients presented by Prof. Daniel Wallace at UCLA at the recent American College of Rheumatology convention, fibromyalgia(FM) patients were repeatedly proven to have immune system dysfunction that did not occur in matched control patients nor in patients with other rheumatologic diseases such as lupus(SLE) or rheumatoid arthritis(RA). The latter forms the basis of an objective diagnostic test in FM. These findings demonstrate that treatment of any type must first be based on confirming the diagnosis of FM via these test measurements. Only then can a treatment modality be proven to be indicated and only then can a treatment be monitored to determine its efficacy as one's FM test score changes in response to that treatment intervention. Otherwise, the treatment may only prove to be of a placebo reaction.

Bruce--Very interesting. Do you have any published links on this?

Yes. http://www.biomedcentral.com/1472-6890/12/25

I cannot agree: All cross-sectional data are not proven to be more than epiphenomena. We have done a lot studies on cytokines in FMS: they were different to controls, but in longitudinal observation they had no association to pain, function and mood.

One of the first peer-reviewed published researchers regarding cytokines in fibromyalgia was Prof. Daniel Wallace of Cedars-Sinai and UCLA and he and others used methodology that failed to see particular pathways. Subsequent and far more sophisticated methods regarding chemokines and cytokines which have been repeatedly validated prove the objective basis of the findings of Behm, et al. You cannot depend on simply measuring circulating cytokines, as previous researchers relied upon. Wallace has since demonstrated the high sensitivity and specificity of the methodology Behm, et al discovered in follow-up research, as was detailed at ACR 2013 and which is about to be published. It again reveals the immune system pathways that are distinctive to fibromyalgia(FM) based upon reliable data.

Clin J Pain. 2009 Jan;25(1):1-4. doi: 10.1097/AJP.0b013e31817e13a3.

The role of IL-8 in patients with fibromyalgia: a prospective longitudinal study of 6 months.

Wang H, Buchner M, Moser MT, Daniel V, Schiltenwolf M.

Abstract

OBJECTIVE:

In this prospective longitudinal clinical study, we evaluated the role of proinflammatory cytokine IL-8 and its clinical relevance in patients with fibromyalgia (FM) who fulfilled clearly defined inclusion and exclusion criteria and underwent a 3-week inpatients multidisciplinary pain therapy.

METHODS:

IL-8 in sera was measured in 20 patients with FM and 80 healthy participants at 4 fixed time points: at the beginning of the study, at 10 days, 21 days, and 6 months, respectively. Pain intensity, back function, depression, nicotine/alcohol consumption, and medication were assessed in the patient group and correlated with IL-8 levels.

RESULTS:

Before and during the inpatient therapy, the serum level of IL-8 was significantly higher in patients with FM compared with controls (P

The Fibromyalgia syndrome is a complex condition. Any clinical syndrome whose disease mechanism is not fully known takes us to several theories as how the symptoms are produced. While there is no disease mechanism really proven, no true answer will be known to the question "how to treat?". Fibromyalgia is a big challenge to the physician. It is teaching us how to be doctors again. Science and medical art are necessary to approach this patients.

It is less the medical art but the art the approach the patients to manage their complaints themselves

That's right.

Good clinical practice is based on both science and medical art. In this case we have to admit that effect studies have shown limited effects on fibromyalgia symptoms. If we turn to qualitative studies exploring how it is like to live with fibromyalgia from a patient's perspective I think these studies show some challenges having to be met and addressed in clinical encounters. My view is that these different needs claim that health professionals are attentive to each patient's story in an attentive way and collaborate with the patient to find creative ways to find ways leading to wellness. To me, this is the art!

Thank you. Perhaps I will - however, at the present I am not on Facebook

CranioSacral Therapy is an excellent non-pharmacological approach to alleviating pain in Fibromyalgia. Unlike massage therapy, CranioSacral Therapy uses an extremely light touch (approximately 5 grams of pressure). This therapy which was borne out of the osteopathic tradition is effective in assisting the body in removing restrictions within the body.

I am including a link to a specific study on the benefits of CranioSacral Therapy in treating Fibromyalgia.

http://www.upledger.com/pdf/CST%20and%20Fibromyalgia%20Study%20-%20Full%20Article.pdf

Importantly, the original ACR criteria for FMS Classification Purposes in 1990 and the more Recent Criteria 2011 and revised by Dr Fred Wolfe are often used for diagnostic criteria by clinicians treating individual patients. This is neither the intent nor the optimal manner to use criteria developed for classification purposes. I have found that many of my patients with FMS, including those meeting ACR old and/or newer classification criteria have CO-MORBID Trigger points that are palpable and reproducible (in addition to their Tender Smythe points. I am aware of only one study that ever looked into the inter and intra observer variability in palpating trigger points and concluded that palpation of trigger points was "not reliable". I question whether that study was powered adequately and therefore potential for type 2 beta error.

The pragmatic distinction is obvious to myself and to my patients (once I locate the "knot" , for lack of a definitive term.

Now, to answer your question specifically, ie what non pharmacological modalities work? I find that myofascial release techniques performed upon the patient is very painful initially (during the treatment) but great relief is experienced by the patient, albeit for variable periods of time. Therefore, I teach the patient how to utilize several inexpensive devices e.g, the body stick with individual rollers or a single roller held in one hand is easier to use for the patient but often sold for self management of plantar fasciitis. Once these are under control, the daily chronic pain diminishes, patients learn self efficacy and are active in their management and increase function.

We have a paper accepted for publication coming out soon in Arthritis Care and Research that looks at Wolfe's modification of the new criteria and measures sensitivity and specificity in consecutive samples of patients with chronic pain syndrome with and without FMS as diagnosed by clinician.

If you look at literature since 1990 , all FMS trials, by design , included individuals who met the 1990 ACR criteria. However, no methods section that I ever read specifically discusses the confounding variable of palpable trigger points !

We will be formally putting this together for future publication as well.

My apologies for making this so long.

I have personally observed several hundred patients with FMS who benefited greatly once myofascial release techniques, education on applying self techniques for maintenance. It is a true joy to see folks improve with less suffering and better QOL and control.

Psychology Professor at SUNY SB who have done some studies with myself, find that those who take a passive "fix me" approach have low self efficacy (perhaps for a variety of reasons). It is a significant issue in those "refractory" cases that get sent to rheumatologists . How best to change their feelings, based upon their perception is a challenge but brief CBT in office can hopefully engage some to be part of their own management team. It takes alot of empathy, goal sharing, flexibility on the providers part.

Those cases of FM caused by carbon monoxide poisoning are easily tested, treated and reversed when treated as such. The unique hallmark of cases by CO is multi-sensory [hyper]sensitivity to stimuli of all kinds. In FM cases caused by CO poisoning, this is expressed most prominently as sensitivity to touch [patients commonly cut all the shirt tags out of their collars], but it also includes hypersensitivity to normally tolerated levels of lights, sounds, odors, flavors, etc.

I've posted more on CO theory, testing and treatment at

https://www.researchgate.net/post/What_are_the_autism_risk_factors_maternal_inflammation_infection_diabetes_and_toxicant_exposures?exp_tc=tprc

Cases of FM not caused by CO poisoning do not report multi-sensory sensitivity.

I just recently stopped taking my Levothyroxin which is a thyroid medication. It was not on purpose, but when I went to my first residency I forgot my thyroid pills. I don't feel any different. I'm feeling better. I also drink shungit stone water from Russia. What do you think of Fulverines in this water?

Susan

Based on this, we have completed a study couple of years back; funded by a research body on 30 patients for selected mutations, didnot find any- hoping to communicate- unfortunately , there is usually no takers.

my response above was after Janett Strong's comment above and I was seriously believing same way after I did a review literature on mitochondrial disorders esp myopathies in 2001-2002 while doing my advance training in Rheumatology in Australia- came back to India in 2004 and have been brooding over such a study .

Jan and Alan—As a clinician seeing a broad range of patients, I do see both types of fibromyalgia patients. I just discharged one from the hospital yesterday and she drove the staff and physicians crazy. In my experience the passive aggressive types of patients are more aligned with metabolic problems like insulin resistance, obesity and type 2 diabetes. They also tend to be co-morbid with other psychiatric disorders. Hudson and Pope from Harvard were the first to see the connection with other psychiatric disorders in their Affective Spectrum Disorder concept.

http://www.ncbi.nlm.nih.gov/pubmed/1558082

http://www.ncbi.nlm.nih.gov/pubmed/15576066

We expanded the Affective Spectrum Disorder concept and connected to metabolic problems, renaming it Carbohydrate Associated Reversible Brain syndrome or CARB syndrome. In my opinion treating patients with CARB syndrome who seem to have significant brain dysfunction requires aggressive management. Long term exposure to processed food seems to play a major role in these patients so dietary changes are critical for therapeutic success. CBT techniques can be helpful to stimulate them to participate in other treatment modalities.

William , you are absolutely correct. Don Goldernberg a rheumatology colleague of mine was the rheumatologist and was with BU, then Tufts and had a tertiary center for FMS patients. The limitation , as he describes in the article you mentioned, is only 33 consecutive patients were the sample and all referred into his tertiary center may bias findings and therefore the validity of extrapolating their findings to those FMS patients seen in primary care or secondary rheumatology care.

You are quite observant that CBT can be utilized pragmatically by the provider to help patients modify their thoughts and subsequent perceptions and then feeling, attitudes and beliefs. Hopefully this will enable a more solid provider-patient relationship as co-managing the illness without creating a dependency on further medicalization of the illness.

The second reference I saw talked about the ASD concept. I did not see data pertaining to CARB or dietary changes in that particular paper. Although I did not have access to full text , the MeSH terms did not mention CARB or processed food or dietary. Since the article is 2004 publication with Ro-1 grant and NIH funded, it should be freely available via PMC (pubmed central) but it is not via NLM, NCBI or Pub Med; The MeSh terms scouted out by professionals at NLM are MeSH Terms

Adolescent

Adult

Aged

Aged, 80 and over

Case-Control Studies

Family

Family Health*

Female

Fibromyalgia/complications

Fibromyalgia/epidemiology

Fibromyalgia/genetics*

Humans

Logistic Models

Male

Middle Aged

Mood Disorders/complications

Mood Disorders/epidemiology

Mood Disorders/genetics*

Odds Ratio

Prevalence

PS I would be very interested in seeing that data published or not as I am very interested in the notion of CARB syndrome and potential for dietary modifcation.

Jackie, our culture in the past, unfortunately institutionalized lots of folks without psychotic disorders who may harm others or themselves. Sometimes mentally challenged individuals were included among these. Also metabolic, diagnosable and treatable conditions that had neuropsychiatric manifestations e.g. Wilson's syndrome, Acute Intermittent Porphyria , hyper and hypo thyroid patients were not properly diagnosed and would be committed to institutionalization.

It was not that long ago, but fortunately, society and medicine have improved- although we all still have a long way to continuously improve.

FYI

A PubMed Search of FMS and subheading dietary therapy yielded 16 results

http://www.ncbi.nlm.nih.gov/pubmed?cmd=historysearch&querykey=9

Also PubMed search of CARB syndrome (not a MeSH) term but searchable as Text Word.

Display Settings:Summary,20 per page,Sorted by Recently AddedSend to:

Results: 12

Filters activated: Humans, English. Clear all to show 18 items.

Select item 23676592

1.

Dilated cardiomyopathy as a presenting feature of Cushing's syndrome.

Shibusawa N, Yamada M, Hashida T, Hashimoto K, Satoh T, Horiguchi J, Oyama T, Takeyoshi I, Mori M.

Intern Med. 2013;52(10):1067-71. Epub 2013 May 15. Review.

PMID: 23676592 [PubMed - indexed for MEDLINE] Free Article

Related citations

Select item 22318132

2.

Posterior reversible encephalopathy syndrome as a revealing manifestation of Guillain-Barré syndrome.

Etxeberria A, Lonneville S, Rutgers MP, Gille M.

Rev Neurol (Paris). 2012 Mar;168(3):283-6. doi: 10.1016/j.neurol.2011.06.006. Epub 2012 Feb 6.

PMID: 22318132 [PubMed - indexed for MEDLINE]

Related citations

Select item 22217617

3.

Unusual case of intra-arterial doxorubicin chemoembolization-associated posterior reversible encephalopathy syndrome.

Pawar PS, Noviawaty I, Zaidat OO.

Neurologist. 2012 Jan;18(1):49-50. doi: 10.1097/NRL.0b013e318235a06d.

PMID: 22217617 [PubMed - indexed for MEDLINE]

Related citations

Select item 22197403

4.

Neuroimaging findings in a case of fluoxetine overdose.

Szólics M, Chaudhry M, Ljubisavljevic M, Corr P, Samir HA, van Gorkom KN.

J Neuroradiol. 2012 Oct;39(4):254-7. doi: 10.1016/j.neurad.2011.10.006. Epub 2011 Dec 22.

PMID: 22197403 [PubMed - indexed for MEDLINE] Free Article

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Select item 20154432

5.

Reversible alcohol-related dementia: a five-year follow-up study using FDG-PET and neuropsychological tests.

Asada T, Takaya S, Takayama Y, Yamauchi H, Hashikawa K, Fukuyama H.

Intern Med. 2010;49(4):283-7. Epub 2010 Feb 15.

PMID: 20154432 [PubMed - indexed for MEDLINE] Free Article

Related citations

Select item 19564586

6.

Brain lesions are most often reversible in acute thrombotic thrombocytopenic purpura.

Burrus TM, Wijdicks EF, Rabinstein AA.

Neurology. 2009 Jul 7;73(1):66-70. doi: 10.1212/WNL.0b013e3181aaea1b.

PMID: 19564586 [PubMed - indexed for MEDLINE]

Related citations

Select item 17923638

7.

Potassium channel antibody associated encephalopathy presenting with a frontotemporal dementia like syndrome.

McKeon A, Marnane M, O'connell M, Stack JP, Kelly PJ, Lynch T.

Arch Neurol. 2007 Oct;64(10):1528-30.

PMID: 17923638 [PubMed - indexed for MEDLINE]

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Select item 17356570

8.

Regional brain activity correlates of nicotine dependence.

Rose JE, Behm FM, Salley AN, Bates JE, Coleman RE, Hawk TC, Turkington TG.

Neuropsychopharmacology. 2007 Dec;32(12):2441-52. Epub 2007 Mar 14.

PMID: 17356570 [PubMed - indexed for MEDLINE] Free Article

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Select item 15708700

9.

Serial analyses of N-terminal pro-B-type natriuretic peptide in patients with non-ST-segment elevation acute coronary syndromes: a Fragmin and fast Revascularisation during In Stability in Coronary artery disease (FRISC)-II substudy.

Lindahl B, Lindbäck J, Jernberg T, Johnston N, Stridsberg M, Venge P, Wallentin L.

J Am Coll Cardiol. 2005 Feb 15;45(4):533-41.

PMID: 15708700 [PubMed - indexed for MEDLINE]

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Select item 11697848

10.

Reversible posterior leukoencephalopathy syndrome following CHOP chemotherapy for diffuse large B-cell lymphoma.

Edwards MJ, Walker R, Vinnicombe S, Barlow C, MacCallum P, Foran JM.

Ann Oncol. 2001 Sep;12(9):1327-9.

PMID: 11697848 [PubMed - indexed for MEDLINE] Free Article

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Select item 2760434

11.

D-lactate-associated encephalopathy after massive small-bowel resection.

Scully TB, Kraft SC, Carr WC, Harig JM.

J Clin Gastroenterol. 1989 Aug;11(4):448-51.

PMID: 2760434 [PubMed - indexed for MEDLINE]

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Select item 2460212

12.

Paraneoplastic limbic encephalopathy with testicular carcinoma. A reversible neurologic syndrome.

Burton GV, Bullard DE, Walther PJ, Burger PC.

Cancer. 1988 Nov 15;62(10):2248-51.

PMID: 2460212 [PubMed - indexed for MEDLINE]

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Would love to see article on renaming and dietary processed food, I presume, avoidance. That would be great !!!

After 35 years of MD in New York, I had a handful of lupus neuropsychiatric patients who had been institutionalized and once correct dx made, treatment enabled them to return to community and occasionally vocational social roles.

I have fibromyalgia - believe me, pain intensity is not the only thing to consider for intervention! It's fatigue, disability and distress that are the most important aspects to consider. Pain intensity and disability are poorly correlated, and it's the disability and distress that most strongly influences treatment seeking.

I think the most useful approaches continue to be good information (to normalise the symptoms and reduce distress), exercise (for mental wellbeing, and to maintain general fitness - it does not have to be a gym based fitness programme! I personally like to garden, cycle, and dance), and cognitive behavioural approaches such as goal setting, problem solving, developing mindfulness, positively reframing the experience, and self regulation especially diaphragmatic breathing. Nothing much has changed in terms of effective, evidence-based approaches for FM.

BTW this concept of cause-effect of mood and FM must be abandoned. Who cares which came first - just TREAT the mood, and support self management of improved function.

I think that Jackies answer on alleviation of symptoms in fibromyalgia is very important. Her observation is in line with research findings on quality of sleep prediciting both onset of fibromyalgia and in case of a relatively better quality of sleep during fibromyalgia also predicting improved health/alleviation of symptoms. The key issue from my point of view as a researcher in this area and as a psychologist is to create conditions of life that allows good or improved sleep. Another important dimension in good sleep also should be to be able to switch of stress. It should be very interesting to read some kind of description from Jackie on how she thinks that these matters could be handled.

Do I understand it right when I read that your experience regarding promoting good sleep is from pharmaceuticals?

I also had trouble with sleep - refreshing sleep. This was compounded for a while when I had postconcussion following mTBI. I used CBT for insomnia, good sleep hygiene, deep relaxation with binaural beats and ultimately, mindfulness. Remembering not to exercise too late in the day, eliminating coffee after 4.00pm, maintaining a good routine before bed, and ensuring I don't get over-tired helps.

I did try gabapentin for about 12 months. My sleep was better, but it made no difference to my pain. I've since stopped it, and haven't noticed any difference in my sleep.

For some time you may try antidepressants. But they are not the solution. The solution is self efficacy.

In general, I propose several and simple measures for three months:

• Sleep well (everyday)
• Mild physical exercise, if tolerated (everyday)
• Stretching, if tolerated (everyday)
• Mild physical therapy, if tolerated  (once per week)
• Psychological therapy -cognitive behavioral therapy- (once per week)
• Amitriptyline 10 mg (every night)
• Detox measures
• Classical Yoga (once per week)
• Spa, if tolerated (once per week)

If these measures don't work, we can try with;

• Rule out mitochondrial myopathy
• Rule out brain disorders
• Rule out food intolerance or allergy disorders (gluten , lactosa...) 
• Rule out viral diseases (Epstein–Barr virus,influenza virus....)