The researchers noted in their abstract that:

"Pain is a unique personal experience showing variability where gender and sex related effects might contribute. The mechanisms underlying the differences between women and men are currently unknown but are likely to be complex and involving interactions between biological, sociocultural and psychological aspects."

They say in their article that painful experimental stimuli are generally reported to produce a greater intensity of pain in women than in men, and that clinical pain is often reported with higher severity and frequency, longer duration, and present in a greater number of body regions in women than in men. Women are also more likely to experience a number of painful conditions such as fibromyalgia, temporomandibular dysfunction, migraine, rheumatoid arthritis and irritable bowel syndrome. With Fibro, 80-90% of sufferers are women.

The researchers note that with regard to biological factors, quantitative and qualitative differences in the endogenous pain inhibitory systems have been implicated as possible causes of these differences, as well as an influence of gonadal (sex) hormones. Psychosocial factors like sex role beliefs, pain coping strategies, and pain related expectancies may also contribute to the differences. The researchers also note that "being exposed to repeated painful visceral events [e.g. period pains and childbirth] during life may contribute to an increased sensitivity to, and greater prevalence of, pain among women."

The researchers concluded that:

"When assessing the outcome of pharmacological and non-pharmacological therapies in pain treatment, the factors of gender and sex should be taken into account as the response to an intervention may differ. Preferably, treatment recommendations should be based on studies using both women and men as the norm. Due to variability in results, findings from animal studies and experiments in healthy subjects should be interpreted with care."

Other research has suggested that repeated or severe exposure to pain can cause a change in the way the brain works, leading to a lower pain threshold and hypersensitivity to pain. It is one of, or part of, the theories about what causes Fibro - the traumatic trigger event causes the brain to effectively "re-write" how it works. It is an interesting idea that the reason more women get Fibro and other chronic pain conditions may be because women are exposed to much more pain from their own bodies throughout their lives. Possibly in the future, it could lead to options of trying to prevent the onset of Fibromyalgia in girls & women who have been found to have a genetic susceptibility to the condition by aggressively managing period pains and the pain from injuries from puberty onwards. 

People who have worked with the ME community will recognise the name of Simon Wessely amongst the researchers - Dr Wessely is not thought of highly amongst the ME community because of his theories on the psychological basis of ME.

The study aimed to "evaluate the use and costs of medical resources before and after a diagnosis of fibromyalgia syndrome [Fibro] in a large primary care population in the UK."

The researchers applied an existing data set for medical resource use among patients with a Fibro diagnosis. The patients in the dataset were observed to use 157 types of medical resource and the quantities of these medical resource use, both before and after the Fibro diagnosis, were multiplied by their costs in order to calculate the cost of care within the National Health Service, excluding hospital costs. These costs included general practitioner [GP] visits, drugs, referrals, and diagnostics.

A trend analysis was applied to the costs before diagnosis in order to predict what the later costs would have been if the Fibro diagnosis had never been made. These predicted costs were then compared with the observed costs after diagnosis.

The researchers found that, following a Fibro diagnosis, a decrease in costs was observed, as compared with the predicted costs if the diagnosis had not been made. In the 4 years after diagnosis, the average difference between the observed cost and the predicted cost if the diagnosis had not been made was £66.21 per 6 months per patient. The researchers noted that this "suggests that making the diagnosis leads to savings and a decrease in resource use."

The main cost saving effect was observed for tests and imaging (£24.02 per 6 months), followed by pharmaceuticals (£22.27), referrals (£5.56), and GP visits (£4.36).

The researchers concluded that:

"Failure to diagnose a true case of FMS has its own costs, largely in excess GP visits, investigations, and prescriptions."

This study should be used by the NHS to prove the need, in purely financial terms, for better diagnosis of Fibro. However the study, like others before it, does not take into account the number of patients who were given a Fibro diagnosis and then told that there was nothing that could be done for them. I have heard this has happened many times from other patients and it happened to me - all the tests leading up to a rheumatology appointment at which you get given the Fibro diagnosis, maybe told of a few drugs to try if you are lucky, and are then discharged with a statement along the lines of "there is nothing else I can do for you" or "I don't treat Fibromyalgia". Not treating Fibromyalgia is obviously a huge cost saving for the NHS and this may actually be a factor in why it is so hard to get specialist services for Fibro from the NHS - the cost of paying for it could cripple the NHS singlehandedly.

FightingFatigue has got an article up with good information about Multiple Chemical Sensitivities (MCS). MCS is something that most people with Fibro deal with it - even if they don't realise that it has a name! It's yet another part of having a hyper-sensitive nervous system.

 "...in the future, with new insights and therapies on the horizon, we will no longer need to refer our fibromyalgia patients to the rheumatologist.

That's my opinion. I'm Dr. George Griffing, Professor of Medicine at St. Louis University and Editor-in-Chief of Internal Medicine for eMedicine."

 The tips are:

1. Do educate yourself.
2. Do prepare for your appointment.
3. Don't whimper and whine.
4. Don't go in with a chip on your shoulder.
5. Do have realistic expectations.

For the full article, please click here.

For more useful info on how to get on proactively with your doctor, check out 'Are You An Obnoxious Patient?'.

I have noticed in the past that the main body of the publication is often filled with articles lifted bodily from the internet, but I was horrified to see yesterday that the front page article was the controversial New York Times article by Alex Berenson that calls into question whether Fibro is real. Not an editorial on how shocking the article is, or even how it is helping to raise awareness despite it's outdated view. No, a re-print of the actual article. Never mind the possible illegalities of this; the article was shocking and digusting in the first place, but its prominent position in such a renowned and well-read publication as the New York Times meant that no matter what the article said, its mention of Fibro would help to raise awareness. Publication of the article in FaMily magazine has no such silver lining: it is merely helping to perpetuate out of date myths about the condition and should upset readers no end. I was furious and still am.

The FaMily magazine editor didn't even publish any of the official responses to the article: from experts, from the  American National Fibromyalgia Association or from FMA UK. He published a few responses from regular Americans instead. He didn't even comment on how shocking the article was.

I find it disgraceful that any publication that is supposed to promote awareness of Fibromyalgia and is supposed to help people with Fibromyalgia in the UK could do anything so ridiculously stupid and demeaning. I would cancel my subscription if it wasn't for the fact that I want to know what other horrors are going to be published in future.

1. Non-restorative sleep: interruptions to the deep, restorative Stage 4 sleep - leading to poor sleep quality - are a classic symptom, and insomnia is also often a problem. Without enough restorative sleep, your body cannot repair the damage done on a daily basis which has a huge impact on people with ME-CFS and FMS. Over at butyoudontlooksick.com I'm always telling people new to managing FM or ME-CFS that IMO sorting sleep should be the number one priority as without good sleep even otherwise healthy people will start to show symptoms! To improve sleep quality, Dr. Podell recommends behavioral training, herbs and medicines, and nutritional supplements. A stronger sleep medication - I always used to use zopiclone - for a short period of time was always the best way I knew of nixing a flare (this is personal experience and may not apply to everyone). For Dr. Podell’s lecture on improving sleep quality, click here.
2. Disordered breathing rhythms: according to Dr Podell it is common for Fibromyalgia and ME-CFS patients to develop disordered breathing, taking small rapid breaths using only the small muscles of the chest. I know I tend to do this and it is either (in my case) partly caused by CMP (Chronic Myofascial Pain) or leads to it worsening.
3. Deconditioning: although Fibromyalgia and ME-CFS are not caused by a lack of physical fitness, it is usual that the symptoms of either condition prevent people from exercising and a decrease in physical fitness doesn't help the situation. I'm now working on improving my fitness, having become deconditioned over years of severe, untreated Fibromyalgia.
4. Magnesium loss in the urine: physical pain and mental distress both lead to magnesium being lost in the urine and a magnesium deficiency then increases the hypersnesitivity to pain that is a symptom of FM, and increases vunerability to stress. Magnesium malate (which supplies malic acid as well as magnesium) is often recommended for FM patients and you need to be careful to choose an easily absorbed form of magnesium as some forms are so indigestible that they act as laxatives. The supplement Malic Relief from CountryLife helped me for many years, but some people need infusions or injections, such as the modified Myers Cocktail used by Professor John Davies at his FM Clinics to kick-start their way out of this vicious cycle.
5. Hormonal imbalances: FightingFatigue says "Both physical and mental distress trigger the release of hormones such as cortisol that promote tissue breakdown. At the same time, distress depresses the output of hormones that promote growth (e.g., DHEA growth hormone). Thyroid and sex-hormones may also be affected. These hormonal disturbances undermine healing, which then leads to further hormone disruption"
6. Blood sugar instability: All of the above cycles have a poor effect on the body's blood sugar and insulin systems and reactive or dietary hypoglycaemia is a problem that FM and ME-CFS patients have to consider. It is certainly something that I suffered from quite badly. For Dr Podell's article on the subject, click here or see Devin's Diagnostic from Devin Starlanyl. There is more information on this subject in "The First Year: Fibromyalgia" by Claudia Craig-Marek.
7. Mind and body tension: It is hard to not feel mental tension and to tense physically when you are in pain, but doing so only leads to more pain, especially if CMP is a factor, and mental tension leads to feelings of anxiety and loss of control, which will lead to more tension. Relaxation techniques can help with this and Dr Podell teaches them to his patients.
8. Losing perspective and losing hope:  when you are ill for a long time, especially with an illness like Fibromyalgia or ME-CFS where you may have to fight for recognition, diagnosis and treatment, it is not unusual to lose hope and to catastrophise (when small setbacks seem like catastrophes). People in this situation are often also angry and may lose hope entirely and give up trying. All this suppresses the immune system, possibly worsening symptoms and certainly making you more susceptible to infections that could then worsen your illness. Also, unless you are one of the lucky few with a very good support network icluding a helpful doctor, then giving up as a Fibromyalgia or ME-CFS patient will usually mean that you do not get any treatment as it is usual to have to fight to see the right doctors and to get the right treatments, especially in the UK. Dr Podell recommends Cognitive Behavioural Therapy (CBT) for this problem and I would also say that more standard counselling can also help.

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help."

That is the modern version of the Hippocratic Oath written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today. Although the Hippocratic Oath does not actually contain the phrase "Do no harm" as many people believe it does, such an intention can be gathered from the many forms of the oath, including this one above.

 Something that occurred to me a couple of months ago is that, in their treatment of Fibromites, many doctors do not uphold the Hipppocratic Oath. How often do support group leaders hear someone say:

"The doctor said they didn't know what to do to treat Fibromyalgia, but said that they would consult other doctors and refer me to specialists in order to try and find treatments, as well as reassurring me that even if nothing was yet available to completely manage my Fibromyalgia, advances are being made all the time"?

 Never, is my experience. What you do hear, and depressingly often is:

 "The Doctor said there was nothing to be done for Fibromyalgia."

This statement simply isn't true: there are many treatment and management options available for Fibromyalgia, including some medications that are now "on-label" for Fibromyalgia with the US FDA. But many doctors tell patients the above statment and many patients then suffer unneccesarily, sometimes for years, believing that the doctor must know best. Patients become depressed as this attitude kills hope and who would not get depressed at being told, possibly when you are young, that excruiating agony, the need for care and diminishing health is all you have to look forward to?

 Even if a doctor does not know anything of all the options now available for the treatment of Fibromyalgia, they should never, ever, ever say this to a patient. They should do as the Lasagna Hippocratic Oath says and "not be ashamed to say "I know not," nor...fail to call in... colleagues when the skills of another are needed for a patient's recovery". They should "apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism" and remember that they "treat... a sick human being, whose illness may affect the person's family and economic stability."

Above all, doctors should remember to "prevent disease whenever [they] can, for prevention is preferable to cure". A doctor causing depression and causing stress that could easily lead to the worsening of a patient's condition, is violating their Oath. But so many doctors do so when faced with Fibromyalgia patients. Why do we let them? Why aren't they held to account?

In the study, 33 men with fibromyalgia admitted to a multidisciplinary pain rehabilitation center, at a tertiary referral medical center, were matched to 33 women with fibromyalgia for age, treatment dates, and program completion status. The patients were put through a 3-week outpatient multidisciplinary pain rehabilitation program based on a cognitive-behavioral model that incorporates analgesic medication withdrawal.

The Multidimensional Pain Inventory (MPI), Short Form-36 Health Status Questionnaire (SF-36), Coping Strategies Questionnaire-Catastrophizing subscale (CSQ-C), and the Center for Epidemiologic Studies-Depression scale (CES-D) were administered before and after treatment. The numbers of patients using opioids, nonsteroidal anti-inflammatory drugs (NSAIDs), and benzodiazepines before and after treatment were compared.

The study found that prior to treatment, the MPI and SF-36 scores revealed that men had lower health perception and more physical limitations while women had greater life interference due to pain. The overall differences between all pre- and post-treatment outcome measures demonstrated the patients had a statistically significant response to the treatment. However, men had lower post-treatment scores on the SF-36 health perception, role limitations-physical, and social functioning subscales. Significant within-gender reductions in opioid analgesic, NSAID, and benzodiazepine use were observed but no significant between-gender differences were identified.

 The authors concluded that the study results "support the hypothesis that pretreatment gender differences are present among fibromyalgia patients undergoing multidisciplinary pain rehabilitation and post-treatment gender differences persist despite improvements in physical and emotional functioning."

At the recent meeting of the All Party Parliamentary Group (APPG) on Fibromyalgia, which I was fortunate enough to attend (retrospective blog post coming soon), the eminent rheumatologist and head of the EULAR Taskforce on Fibromyalgia, Dr Ernest Choy, said something that stuck with me in particular. He said that prompt diagnosis of Fibromyalgia saves the NHS money because use of health resources falls dramatically after diagnosis. I was thinking about this at the meeting and afterwards and came to the conclusion that this isn't a good thing.

It isn't that people with FM use health resources less after diagnosis because they need them less, but that after diagnosis no-one wants to know. All exploratory tests stop, often no treatment is offered and sometimes treatments are even taken away. For many people this is the end of the line and they just fall off the medical radar.

In some cases, a definite FM diagnosis means the restriction of narcotic painkillers, which many doctors believe, incorrectly, do not work for FM - they do work, just not as they should, meaning they should only be used as first-line treatment if there is nothing else. If nothing else is going to be given, then no-one should be left in pain with nothing to even take the edge off. In other cases, individual symptoms are no longer managed with pharmacological options, but no overall treatment is given. How often do I hear from patients "well I got the diagnosis and then my doctor turned round and said there was nothing he could do for Fibromyalgia"? An out-of-date notion and one that should never have been uttered by any doctor who has, presumably, taken the Hippocratic Oath, whether or not they were stumped for ideas. But that's another idea for another blog post...

Two scientists (Malterud, Undeland) at the Department of Neurology, Buskerud Hospital Trust, Norway have recently published an article in the Scandinavian Journal of Primary Health Care, is which they propose that the Fibromyalgia diagnosis is hardly helpful to patients.

The small study they undertook aimed to "explore experiences and consequences of the process of being diagnosed with fibromyalgia". Eleven women diagnosed with fibromyalgia, from two local self-help groups were asked to describe their  experiences and the consequences of the process of being diagnosed with fibromyalgia. The study found that many of the participants had been suffering for years, and that an initial response of relief was common. They said:

"For some, the diagnosis legitimized the symptoms as a disease, for others it felt better to suffer from fibromyalgia rather than more serious conditions. Nevertheless sadness and despair emerged when they discovered limitations in treatment options, respect, and understanding. Some patients keep the diagnosis to themselves since people seem to pay no attention to the name, or blatantly regard them as too cheerful or healthy looking. The initial blessing of the fibromyalgia diagnosis seems to be limited in the long run. The process of adapting to this diagnosis can be lonely and strenuous."

They went on to conclude that generally a "diagnosis may be significant when it provides the road to relief or legitimizes the patient's problems", but that with a Fibromyalgia diagnosis the social and medical consequences are more complex and propose that the diagnosis was hardly helpful for these patients.

The research also discusses whether having migraines is what causes the neurological changes, rather than the other way round.

I have been thinking lately about what comes first in FM - the pain or the neurological changes? Could CMP (Chronic Myofascial Pain) for example, cause the neurological changes of FMS because of the pain it causes? It is well documented that other, more widely diagnosed, conditions, such as Rheumatoid Arthritis and Systemic Lupus, often lead to Fibromyalgia and many experts have hypothesised that this is because of the pain and other stresses (bodily as well as mental) that the primary conditions cause. Could it be possible that everyone with Fibro actually had another condition first, even if they didn't know it (the most likely candidate in that case seemingly being CMP)?

 The dopamine theory (as proposed by Patrick Wood and supported by Andrew Holman) is that physical and mental stresses cause an abnormal reaction in the brains of people with FM, leading to a lack of available dopamine, which then causes the hypersensitivity, fatigue and cognitive fog (among other symptoms). The changes in the brain associated with this theory have been documented and trials of dopamine agonists for FM are extremely promising. Could it be that the dopamine theory and the neurological changes are FM, but that people with FM have a primary condition (e.g. CMP) that leads to the changes? I know that even when my FM is under control with the dopamine drugs, I still have CMP and need to get that treated or the FM symptoms come back or get worse. I also know that, even without the drugs, getting the CMP treated makes a big difference.

And in my experience most, if not all Fibromites with "primary" Fibromyalgia (i.e. they do not have a separate "primary" condition like RA or SLE) have CMP, although many do not realise it. Could CMP be the primary condition?

Some people say that CMP is FM, but experts in the field (Travell, Simon, Starlanyl) all talk about the differences between CMP and FM.

Perhaps all Fibromyalgia is what is now called secondary Fibromyalgia?