rubens 3 graces
Fibromyalgiaface

Burden of disease and disability.
and h
ow it changed History -
by
drdoc on-line

 

The book “Team of Rivals 1 ” – written by Doris Kearns-Goodwin contains within its pages, a very interesting tale.
The book outlines the political lives and rivalries of Lincoln and his Secretary of State William Seward.

 

Team of Rivals


team of rivals

William Seward was the man who ultimately purchased Alaska for the USA from Russia.
In the process known as Seward’s folly, Alaska was purchased for 7.2 million dollars.
At the time they thought he was completely insane.

In fact, Seward had been Lincoln’s greatest rival for presidential nomination years before.

William Seward was married to a lady named Francis Adeline Seward.

Francis was troubled by a mystery illness.
This is detailed in the masterpiece "Team of Rivals" written by Goodwin
on the political rise and endurance of Abraham Lincoln..

 

“Burdened with a fragile constitution, Francis was increasingly debilitated by a wide range of nervous disorders – nausea, temporary blindness, insomnia, migraines, mysterious pains in her muscles and joints, crying spells and sustained bouts of depression…A flashing light, a bumpy carriage ride or a piercing sound was often sufficient to send her to bed”…. “Doctors could not pinpoint the physical origin of the various ailments that conspired to leave Francis a semi-invalid"

 

 



William Seward


sewardPerhaps, if it had not been for the illness of Francis Adeleine Seward, who was Seward's greatest inspiration and advisor, Abraham Lincoln may never have reached the Presidency. Seward was his main rival in the elections that led to Abraham Lincoln ultimately securing the Republican Party vote. However, potentially diverted and with illness plaguing his wife, Seward potentially lost his opportunity for his greatest ambition – to become President of the United States and thereby, the mystery disease changed the history of America. 

Therefore history may well have changed because of this strange and unusual condition

If we analyze the actual symptoms suffered by Francis Seward, the mystery illness is almost certainly revealed as classical fibromyalgia.

Fibromyalgia is a condition that has fought for some years to attain recognition as a specific entity.
However, most people in the medical and Rheumatology fraternity would now acknowledge that fibromyalgia is a real and a very disabling condition.



Francis Seward

adeleine seward
Essentially, Fibromyalgia, causes a syndrome of diffuse body pain, usually striking females aged thirty to sixty. These patients complain of pain, such that they hurt from head to toe and often feel that "they have been run over by a bus" on waking in the morning.

The main complaint is of pain and discomfort especially in the neck and shoulder girdle and low back and they suffer from significant morning stiffness and are beset by ongoing fatigue, insomnia, a ongoing "brain fog", memory impairment and to complicate matters, suffer from widespread somatic symptoms that include headaches, irritable bowel, irritable bladder, jaw pain and become quite significantly dysfunctional.

The problem is that, other than the finding, on examination, of tender points, all tests are non-specific, and there is nothing that further characterizes the problem on the examination.

This is in stark contrast to inflammatory arthritis, such as rheumatoid arthritis, where the presence of swelling and the clinical finding of an inflammatory joint arthropathy define the problem. In such inflammatory arthritis cases, tests may reflect inflammation and also the presence of antibodies.

In fibromyalgia, all tests and investigations are NORMAL.

Because fibromyalgia reveals little on the examination, as a consequence, there are many misconceptions that arise.

Patients have been dismissed as depressed or anxious, and simply as having a failure to cope in society.

There is a misconception that the diagnosis requires the exclusion of all other possibilities and in the past it was simply not recognized as a specific condition.

This has resulted in numerous dissertations, such as the eloquent Nortin Hadler who has published widely on the subject.

Papers such as: “If you have to prove you are ill, you cannot get well: The object lesson of fibromyalgia.2 Fibromyalgia and the Medicalization of misery.”and  Labelling woefulness: The social construct of fibromyalgia.”

In such eloquent papers, discussion in broad terms transmit the opinion that fibromyalgia constitutes a syndrome which is largely a diagnosis “of want of another name.”

George Erlich widely recognized Professor of medicine at the University of Pennsylvania, wrote similar articles.

“Pain is real; fibromyalgia isn’t”. In an article he wrote “I am suggesting that chronic persistent pain is an ideation a somatization if you will” …..

“I am further suggesting that these people choose to be patients because they have exhausted there where withal to cope.”

manto

But as has been seen in the South African experience, denial of disease even as radical as the denial of the presence of HIV – AIDS has been a lesson for us.

 

Our own former President,Thabo Mbeki and his now late Minister of Health Manto Tshabalala Mnsimang, for years verbalized their belief that vegetables - lemons, african potato, garlick, and lemons and diet alone, could cure the “non existent disease” called AIDS. However, we all know that the presence of the virus has been fully defined as the cause.

Similarly, in fibromyalgia now, we now know that in reality, the syndrome is a neurological pain disorder, characterized by central nervous system dysfunction with central sensitization of the actual input of nerve transmission to the brain.

 

We know that neural origin pain is perhaps the most severe pain that patients can suffer.

These patients are non-responsive to standard anti-inflammatory drugs or analgesics, and they search from healthcare provider to health provider undertaking unnecessary tests, investigations, procedures and even surgery for no good cause.

 

This amounts to enormous medical costs and little wonder that stress or depression can be associated with the condition. These factors can further contribute to the downward spiral and may well bring the condition to a head.

 

The diagnosis is a specific diagnosis. It is not a diagnosis of exclusion.

Symptoms of fibromyalgia include:

 

Pain all over

70%.

Irritable bowel

36%.

Widespread pain

98 %.

Headache

53 %.

Thoracic pain

72%.

Prior history of depression

31%.

Lumbar pain

79%.

Anxiety

45%

Cervical pain

85%.

Urinary urgency

26%.

Sleep disturbance

76%.

Dysmenorrhea

40%.

Fatigue

78%.

Raynaud’s phenomena

17%.

Morning stiffness

76%.

Paresthesia

67%

 

The American College of Rheumatology defined criteria for this problem in 1990.

The problem termed “criteria for fibromyalgia” included:

 

A history of widespread pain for more than three months on both sides of the body – above and below the waist and axial skeleton (cervical spine, anterior chest, thoracic pain or low back pain).

Association with the presence of 11 out of 18 tender points on physical examination.

Of note the presence of second clinical disorder does not exclude the diagnosis of fibromyalgia.

The tender points are located as follows:

 

Lower cervical – C5/6/7.

The second costochondral junction.

The lateral epicondyle.

Supraspinatus.

Occiput

Trapezius.

Gluteal.

Trochanteric bursa.

The medial knee.

 

This gave a sensitivity of 88.4% and a specificity of 81.1%.

However, the ACR criteria where never intended to be applied to individual patients for the purpose of diagnosis.

Their use has been misinterpreted. They are in fact, really for research purposes.

For example: The pain may wax and wane and migrate. the tender points measure not only how tender individuals are, but also how distressed they are. The tender point sensitivities influenced by gender, age, aerobic fitness and mood disorder.

The diagnosis is a clinical one.

It is made on listening to the patient, plus clinical examination of the patient.

 

A good examination will help to exclude other obvious underlying disease, such as inflammatory arthritis, and thereafter one can do with a minimal amount of tests, required to exclude perhaps, thyroid abnormalities, inflammation with an ESR and CRP and blood count, and as few further radiological investigations as possible.

 

As US Supreme Court justice, Potter Steward was often misquoted in the supreme court of America in 1964 regarding the description of pornography: “I shall not attempt to define the kind of material to be embraced within that description – and perhaps I could never succeed in intelligibly doing so, but I know it when I see it.”

 

Most rheumatologists would suggest that the diagnosis is easy to make.

The patients are easily recognized if one is aware, educated, and looks out for it.

Yet this is a diagnosis that is usually missed by most primary practitioners and many specialist physicians.

In numerous studies that have been undertaken, it is quite common to find a long delay in the making of this diagnosis. In a survey of 368 patients of arthritis to evaluate impact on daily life, rheumatoid arthritis patients had a mean of 2.01 years, before diagnosis was made, compared to fibromyalgia, which had a delay to diagnosis of 6.67 years.  This is similar to experience widely noted around the world. Clearly, primary physicians require education to recognize the condition.

 gotlieb survey

Fibromyalgia will constitute between 5 and 6% of all patients presenting to general practice.

10 to 27% of patients seeing a Rheumatologist have fibromyalgia.

It is 6 to 7 times more common in females.

Genetic relationships are noted.

The average age of the patient is between 30 and 60 years.

In fact, it may well occur in childhood as well.

 

20 to 30% of patients, who have fibromyalgia, will have noted that the problem may have been precipitated by trauma or surgical or emotional distress or a catastrophic event.

Co-existent rheumatic disease is possible.

As many as 25% of patients with rheumatoid arthritis and 80% with Lupus and 50% of Sjogrens syndrome have been shown in some studies to have fibromyalgia as co-existent problems.

 

Etiology:

 

We would define pain as an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.

The pain may be affected or influenced by the situation where or when the pain arises. Fear relating to the underlying issue, and emotion or depression or even optimism of the underlying individual will have a major impact on pain perception. Cultural factors therefore play a major role in how an individual interprets pain.

 

Types of pain

 

There are different types of pain.

 

1.      Peripheral or nociceptive pain: relates to mechanical damage in the tissue and is also known as somatic or even visceral pain, where there has been a chemical, inflammatory or mechanical component. These problems include diseases such as osteoarthritis or rheumatoid and are usually responsive to anti-inflammatories or anti-inflammatory or analgesic medication.

 

2.      Neuropathic pain occurs with damage or entrapment of peripheral nerve. This results in sensitivity of the nerve and ongoing firing of the nerve membrane. This causes a poor response to anti-inflammatories or painkillers and would occur commonly in diseases such as diabetes or shingles or post hepatic neuralgia or trigeminal neuralgia.

 

3.      Central or non nociceptive pain. This is the most severe kind of pain. This relates to the central disturbance in pain processing itself and includes conditions such as fibromyalgia, irritable bowel, tension headaches or chronic idiopathic low back pain. These patients have ongoing pain that is non responsive to analgesia or anti-inflammatory drugs or even opiates. Unfortunately, many patients are treated with such drugs and develop dependency on such drugs with their inappropriate use. They do respond however to central neuro-active compounds such as Tricyclic or Norepinephrine-serotonin-reuptake inhibitors and anti-epileptic drugs such as Pregabalin or Neurontin.

 

The pain pathway.

 

The pain neuronal pathway starts at the receptor at the periphery.

The pain signal travels to the spinal cord. In doing so it utilizes either the fast fibres known as the A-delta fibres, which are myelinated or alternatively the unmyelinated and slower C- fibres.

 

At the periphery, the pain receptors maybe triggered by a local insult, resulting in chemical mediators  such as substance P, Potassium ions, Adenosine triphosphate – ATP, histamine and Bradykinin, as well as prostaglandins and Calcitonin gene related peptide.

The signal transmits through the nerve to the dorsal horn of the spinal cord where synapses transmit the signal to the spinothalamic tracts, and up to the brainstem.

At the dorsal nerve root ganglion, the A-delta – rapid fibres- trigger the AMPA receptors, which are Trans membrane receptors for glutamate.

 

The slower C fibers have the potential to trigger both the AMPA and NMDA receptors.

The NMDA receptors however are usually blocked by magnesium ions, which prevent glutamate entering the post synaptic cell and prevent signaling.

It is only when there is constant stimulation with glutamate able to displace the magnesium ions, allowing glutamate to enter the cell and trigger the next neuron.

 

Several mediators moderate what ascends up the spinal cord and this is termed the gate control mechanism.

 

Descending neurons from the brainstem-- descend down the spinal cord and at the level of the synapse, in the dorsal horn release endogenous opiodes, serotonin, noradrenaline and gamma amino butyric acid –GABA. These therefore prevent signals ascending up the spinothalamic tracts.

Disruption of this descending inhibitory pathway results in chronic pain syndromes.

 

Chronic pain is defined as pain for more than three months without any biological value.

In a survey of chronic pain in Europe, it is noted that pain in the form of chronic pain, affects approximately 2% of the population.

 

Of these:

20% had associated depression.

60% were less able or unable to work.

20% were unemployed because of the pain.

66% had visited there doctor between 2-9 times in the previous six months.

50% were using over the counter analgesia

66% were taking prescription medication.

 

Chronic pain is caused by

Sensitization of the pain receptors, which unmask silent pain receptors known as collateral sprouting, where the receptor field widens from the original source at the membrane or skin surface.

Central sensitization. Large scale release of glutamate causes chronic stimulation removing the magnesium block and allowing ongoing stimulation.  This is called windup.

Deficiency of the inhibitory descending fibres from the brainstem. Spreading of the receptor fields occurs therefore to different spinal levels and the problem becomes diffuse and involves the body in general.

 

It is this mechanism that we now believe is the cause of fibromyalgia.

 

The pain of fibromyalgia is severe, ongoing, generalized and chronic.

The patients describe unrelenting and non-responsive pain.

 

Evidence for central pain mechanism of fibromyalgia.

 

Central pain dysregulation.

Peripheral tissues in fibromyalgia are normal.

MRI or biopsy of these peripheral tissues including what is often interpreted by the patients as nodular lesions under their skin at these tender points, are entirely normal.

There is no difference in peripheral tissue pathology.

 

There is an abnormal response however to different stimuli.

There is a normal threshold for sensing normal stimuli but is a lower threshold at which such stimuli becomes painful and therefore these patients feel low level of stimulation to be a pain source.

Multiple trials have been done showing the lower threshold at which pressure becomes painful in these patients.

Similarly, temperature also may be recorded as painful at a lower temperature, compared to that felt by normal subjects.

 

Fibromyalgia is thought to be disordered, sensory processing.

There is a reduction in inhibitory pathways and uncontrolled input of signals to the brain – windup.

There is an uncontrolled spreading and intractable pain.

The smallest stimulation provokes pain – something called allodynia.

 

Functional MRI.

These studies demonstrate blood flow in the brain to different stimuli.  Such changes may be recorded within seconds.

An elegant study, by Gracely et al, showed that a low stimulus of pressure produced a high pain level and there was early triggering of cerebral blood flow compared to triggering of control subjects who required greater pressure to achieve the same pain levels and equivalent cerebral blood flow patterns.

Similar pressure resulted in low levels of pain.

Greater pressure was required to induce cerebral blood flow changes and the perception of pain in normal subjects.

Studies showed that with pain from pressure applied to the thumb nail bed, that there were 13 regions of increased brain activity revealed in a fibromyalgia group, compared with 1 in the controlled group.

However, no statistical difference was identified when increased pressure applied to controls, caused the same amount of pain sensation in the control population compared to the subjective pain response of the fibromyalgia patients.

 

SPECT and PET scanning also demonstrate brain cerebral blood flow and brain activity but are more delayed, compared to functional MRI. Therefore, the functional MRI has provided the most accurate method to-date, of observing cerebral blood flow in response to application of a stimulus.

Mountz and Bradley demonstrated a reduction in baseline thalamic metabolic activity in fibromyalgia patients compared to normal control subjects.

 

NMDA receptor antagonists such as dextromethorphan and Ketamine reduce experimental windup in fibromyalgia patients. Descending inhibitory pathways are dysregulated in fibromyalgia patients as a response to noxious stimuli Spinal fluid levels of 5 hydroxy-tryptamine, serotonin levels, are reduced. 5 hydroxy-tryptamine is a mediator in the inhibitory mechanism of the descending inhibitory pathways.

Substance P, one of the mediators for stimulation of the dorsal horn neurons are increased by almost 3 times, in the spinal cord of fibromyalgia patients.

 

We also note inflammatory cytokines are also increased, as is insulin like growth factor.

 

Autonomic nervous system dysfunction.

 

The second mechanism which separates fibromyalgia from the average subject is that of autonomic nervous system dysfunction. The autonomic nervous system provides our fight – flight response.

It controls the nervous system that is “automatic”, that runs our bodies beyond our control. This would include functions such as our heart rate, bowel, urogenital and temperature homoeostatic responses to the environment.

The sympathetic nervous system persistently remains hyperactive in fibromyalgia patients, and is hypo-reactive to stress.

 

There is an association between stress and enhanced pain.

In fibromyalgia patients, there is chronic hyper-stimulation of beta adrenergic receptors, leading to receptor desensitization and down-regulation.

 

Therefore such patients are less able to respond to the surrounding stress or homeostatic requirements to our surrounding environment.

Tilt - table testing has been shown to increase the incidence of orthostatic hypotension compared to controls and there is a reduction in heart rate variability on tilt table testing.

 

The autonomic nervous system supplies nerve supply to the visceral organs.

Dysregulation of this system, may well be the cause of the headaches and migraines that these patients are noted to have.

In addition, it is associated also with the bladder problems, bowel problems, temperature dysregulation, visual focus symptoms and oesophageal symptoms, as well as the problems of fatigue, tiredness and “brain fog”.

It also aggravates the temperomandibular TMJ jaw syndrome.

 

Sleep dysfunction

 

Fibromyalgia patients frequently describe poor sleep pattern and feel unrested on waking.

Abnormal sleep patterns on the electroencephalography EEG, with fibromyalgia, were noted by Maldofsky years ago.

He demonstrated that patients deprived of stage four sleep developed musculoskeletal symptoms and irritability.

Studies in fibromyalgia reveal an abnormality in the continuity of sleep and sleep architecture.

Normal patients have a slow wave sleep pattern.

Fibromyalgia patients have alpha or alert wave intrusion in stage 4 REM sleep.

The consequence is increased wakening, non restorative sleep, daytime somnolence, brain fog and irritability.

 

The genetics of fibromyalgia.

 

There is definite familial aggregation.  28% of children of fibromyalgia subjects will develop fibromyalgia – this is equal to an 8.5 times risk of the problem.

Similarly, family members revealed increased mood disorders and eating disorders as well as irritable bowel, back pain and migraine. 

Genetics would appear to provide a predisposition to developing the condition.

 

Role of psychiatry

 

There is increased psychiatric co morbidity.  Of patients with primary depression, more than 50% will present with somatic symptoms.  Depression will worsen pain outcome, and vice versa.  Antidepressants normalize serotonin and adrenalin levels.  However, only 20% of fibromyalgia patients are clinically significantly depressed, but up to 60% may have low levels of depression.

20% of fibromyalgia patients had increased rates of anxiety. 7% will have panic disorder and phobias will occur in 12% of patients.

Therefore, whilst depression and stress may be considered part of the pattern, they are by no means the cause of the syndrome alone.  They certainly can influence the clinical picture however.  In her dissertation on depression and fibromyalgia in South Africa, Govender, showed 65% of patients had minimal to mild depression and 35% had moderate to severe depression.

Secondary psychological factors.  And because of constant illness frequently without diagnosis, patients fear the unknown.

Secondary stress and depression will occur in 33% of patients.

Patients endure unnecessary procedures and have difficulty finding appropriate medical care.  They experienced huge health costs and are frequently abandoned by healthcare providers.

The consequent loss of hope results in pessimism, and they become increasingly labeled as psychiatric or psychologically disordered.

 

Epidemiology.

 

Studies in various communities around the world showed similar prevalence between urban and rural communities as well as first world and Third World communities.

The condition is not just a disease of the rich or avant-garde.

In South Africa, a prevalence of fibromyalgia of 3.2% was noted in Cape rural workers in a community in Bedford by Lyddell and Meyers.  (Scandinavia Journal of rheumatology 1992; supplement 94:8).

In New Zealand, fibromyalgia was noted in 1.1% of Maori population, compared to Caucasians 1.5%.

In a study of 178 Amish adults in London, Ontario, the prevalence of fibromyalgia amongst the Amish was 7.3% in the rural population, compared to 3.8% in the Amish urban population, and 1.2% of non-Amish rural dwellers.

 

The condition is six times more prevalent in females compared to males.

It can occur in children.

 

Financial cost of disease.

 

Financial costs are increased.  These include direct costs of health care, and indirect costs affecting work or domestic life.  Penrod et al looked at health service costs in women with fibromyalgia.  They noted visits to specialists and physicians were increased.

 

All physician visits over six months

7.12

Specialist visits

3.83

Imaging or laboratory procedures

4.56

General practitioner visits over six months

3.29

Alternative practitioners,

7.09.

Number of medications

6.98.

Drug doses per day

 6.63.

 

Berger et al showed healthcare costs equal to $ 9573 compared to $ 3291 in and fibromyalgia patients over a 12 month period. Health care costs were three times higher with fibromyalgia patients compared to non-fibromyalgia patients.

Absence from work was greater in fibromyalgia patients.  Fibromyalgia patients, on average were absent, 15.83 days per year compared to 6.98 days of control population per year.

 

Fibromyalgia and disability.

 

Impairment is defined as the anatomical or physiological or psychological loss leads to a disability.

Disability is a limitation of function that compromises an individual’s ability to perform an activity of the range considered normal.

Work disability is the inability or diminished potential to engage in full-time gainful employment.

Wolfe et al looked at 1604 patients from six centers in the United States.  26% received at least one form of disability payment.  16% received Social Security patients compared to 2.2% of the US population and 28.9% of patients with rheumatoid arthritis. The steady illustrated that fibromyalgia was as disabling, as an inflammatory arthritis such as rheumatoid arthritis.64% were still able to work.

Burkhardt et al showed that quality of life, in fact was lower in fibromyalgia patients than in patients with rheumatoid arthritis or osteoarthritis.

This was despite the absence of physical damage.

 

Clearly, the Health insurance industry has taken issue with the diagnosis and payment of healthcare benefits as well as disability benefits, to fibromyalgia patients.

In a survey of 1363 patients with fibromyalgia by the American pain foundation, 48% had difficulty with coverage for fibromyalgia pain treatment.  15% had problems with copayment, 12% had problems with premium affordability, 11% had delay in pre-authorization processes, 11% had delay in access to FDA approved medication, 8% had repeated denial of covered benefits.

 

Lobby groups have fought this persistent discrimination against fibromyalgia patients.  Lynne Matallana, president and founder of the non-profit National Fibromyalgia Association, wrote in the Pittsburgh Post-Gazette, July 13, 2008, “There have been some insurers who take the stand that if they make it more and more difficult for patients to get new treatments, they will go away.”

 

In South Africa, there has been a slow recognition of the existence and potential for true disability amongst fibromyalgia patients. The illness is now listed in most insurance company confidential medical report resumes to doctors.  Liberty life, one of the largest insurance companies in South Africa, paid R 257 million in total disability payments in 2008.  Of these 18% went to trauma, 18% to cancer, arthritis 4%, cardiac 7%, and skeletal 14%.

 

Association with trauma.

There is a strong association between neck injury and fibromyalgia.  Buskila reported a 10 times increased risk.  There was a strong association with post traumatic stress syndrome, and such patients with secondary fibromyalgia had a worse outcome.  Disability compensation -up to 30% and loss of employment up to 70%.

21% of adults, developed fibromyalgia within one year of neck injuries from motor vehicle accident.  Neck injuries resulted in greater risk, compared to only the 2% of adults who developed fibromyalgia after lower limb extremity fracture.  Of note, that there was no association between work disability and medicolegal or insurance claims.

 

Individual cases have been settled by the Road accident fund in South Africa.  No specific policy has been finalized to assess all patients with post-traumatic fibromyalgia.

 

There is an ongoing controversy with the diagnosis and difficulty regarding perception of secondary gain and secondary incentive...  Because of the minimal signs of examination and lack of radiological damage, there is a bias against the patients with the disease and a bias of the assessment of such patients.  Patients are referred for multiple opinions by the industry until a contradictory position favoring the insurance company is found.

 

Moldofsky et al suggested in their paper, that the studies did not show resolution of fibromyalgia at the conclusion of medicolegal issues.

Nortin Hadler’s  assertion that “if you have to prove you are ill, you can’t get well: the object lesson of fibromyalgia “– is not shown to be really correct..

 

The insurance panel requires appropriate physician selection.  The assessment should be thorough and timely and should be perceived as fear.  The assessor should be independent without conflict of interest. In fact there should be a registry of independent evaluators, who are educated and ask appropriate questions and can examine appropriately without bias.

Any questionnaire used should be uniform.  For a proper assessment of function, one can use several measurements.

 

  1. The tender point score.
  2. The Health assessment questionnaire
  3. The SF36 health survey.
  4. The fibromyalgia impact questionnaire.
  5. A physician global score.
  6. A patient global score.

 

The fibromyalgia impact questionnaire is a sensitive index of change and correlates with the degree of disability.

The average fibromyalgia patient equals 50 and severe is greater than 70.  The maximal score is 100. 

The questionnaire includes 10 questions that reflect on function severity of pain, fatigue, well-being, stiffness, anxiety, and depression.

 

The health assessment questionnaire looks at activity of daily life and includes questions on dressing and grooming, arising, eating, well-being,

 

The SF36 questionnaire: looks at physical limitation, social limitation, daily limitation, body pain, general mental health, vitality and general health perception.

 

The object of the patient – physician intervention is primarily to make a diagnosis and to educate the patient regarding disease and contributing factors.  The physician must be optimistic and sympathetic and encouraging but unbiased.  Exercise must be encouraged.  Unnecessary procedures, investigations, and in particular surgery must be avoided.

Painkillers, anti-inflammatory drugs, and sleeping polls must be avoided.

The patient should be discouraged from actively seeking multiple opinions.  Explanation of the condition should provide the definitive answer to the multiple complaints that have baffled the patient and healthcare providers for so long prior to diagnosis.  It is very important for the patient to understand that the entire multiple listings of complaints, are all from one single diagnosis – fully explainable – fibromyalgia.

 

It is interesting that the diagnosis is in fact an essential component of successful fibromyalgia management.  Goldenberg et al and Fred Wolfe have shown that patient satisfaction improves significantly after diagnosis.

In addition, Hughes et al showed that there is a clear decrease in the visits to physicians, specialists and natural practitioners as well as a decrease in diagnostic testing and procedures after the diagnosis is made.

 

Therapy of fibromyalgia.

 

Non Pharmacological therapy

 

The most important non pharmacological therapy is exercise.

This involves aerobic – cardiovascular exercise.  This is shown to be far more useful compared to strength training or isometric exercises.  There is some evidence for hydrotherapy and hypnotherapy and weak evidence for acupuncture and chiropractic and massage as well as ultrasound therapy, but no evidence for flexibility exercises.

 

Pharmacological therapy.

 

There is no evidence that opioid drugs, corticosteroids, nonsteroidal anti-inflammatory drugs and painkillers, sedatives and benzodiazepines do any help.  The only analgesic has modest evidence is that of tramadol.  This is available in slow release 150mg, or short acting 50 - 100 mg preparations, or even combination therapy with paracetomol as Tramacet. 

It is important for the patient not to overuse anti pain – analgesic –medication.  Even morphine will not help the patient, who will land up addicted and dependent to such narcotic medication that will serve no purpose.

 

However, the greatest evidence is that of the old fashioned Tricyclic antidepressants in low dose, including amitriptyline—Trepiline / tryptanol, starting at 10 mg and possibly increasing to 25 mg.  This is taken, half an hour before bedtime at night. Side effects include dizziness, excessive drowsiness, dry mouth and altered sleep pattern – including an increase in dreams.  I always recommend to the patient, that they will experience side-effects for the first few days, but that they must persist despite these side-effects, in order to tolerate the drug.  Once on the drug, used must be regular rather than an intermittent or “as required use.” These drugs work, by increasing descending spinal inhibition pathways. Mild weight gain can occur.  This is dose dependent.

75% of patients will respond to Tricyclic antidepressants.

 

Some of the serotonin-noradrenaline reuptake inhibitors SNRI’S, such as Milnacipran - Savella and Duloxetine – Cymbalta are also indicated, and now registered, for fibromyalgia in America.

Duloxetine has been studied in several trials, which show clear benefit above placebo. Milnacipran has also been studied and published showing a 60% reduction in pain intensity. Patient global scores are also markedly improved, by 70 to 80%.

Selective Serotonin reuptake inhibitors SSRI’S such as venlafaxine – Efexor and Fluoxetine – Prozac have a lesser role, as co therapy with amitriptyline. These drugs are not as good as mixed serotonin and norepinephrine reuptake inhibitors

The selective serotonin reuptake inhibitors have side effects of somnolence, dizziness, insomnia, constipation, dry mouth and loss of libido.

 

New anticonvulsants including Pregabalin -- Lyrica and Gabapentin – Neurontin are also now registered for therapy of fibromyalgia.

Pregabalin blocks the neurotransmission of nerve signals in pain fibres, by blocking calcium transport across the membrane. Calcium is required to depolarize the membrane and allow release of neurotransmitter such as glutamate, substance P. and norepinephrine. Pregabalin binds to the alpha 2-delta, subunits of the voltage gated calcium channel in the central nervous system. This prevents release of neurotransmitter to the post-synaptic membrane.  Therefore the signal does not progress to the next neuron. This attenuates the pain pathway.lyrica

 Pregabalin is associated with an improvement in function as measured in the fibromyalgia impact questionnaire scores at doses of 450 two 600 mg per day.

Patient global improvements were between 60 and 80% at 150 -- 450 mg per day doses.  This was published by Crofford et al in 2005.

Pregabalin has significant side-effects.  This includes dizziness, in one third of patients, somnolence 20%, and weight gain in 7%...  Rash is described. Aggravation of depression is also described.

In my experience weight gain is a potential problem and is aggravated by the addition of amitriptyline

 

Other drugs:

 

There is very poor evidence for growth hormone and 5-hydroxytryptamine in therapy.

There is also no evidence for the innumerable number of natural therapies that are claimed as miracle cures by the preying vultures and snake oil salesmen.  I term this “the walletectomy” – the surgical or nonsurgical removal of the wallets of the fibromyalgia patients seeking miracle cures to their symptoms that plague their lives.

Benzodiazepines such valium, Ativan, and other sedatives such as alprazolam – Aropax, and Ambien – Stilnox, do not help and cause drowsiness, light-headedness, depression, dry mouth and constipation.

Beta-blockers – non-selective-- such as propranolol, Inderal/Purbloka, when given, in low dose, have a role to play as inhibitors of the autonomic nervous system pathways.  These reduce headache/migraine and bowel symptoms.  I personally find them extremely useful for these autonomic nervous system symptoms and also find them useful to calm the patient without sedatives, which do not work anyway.

 

In summary

 

Fibromyalgia remains the most difficult problem to treat in rheumatology. Patients suffer and are neglected and treated badly, by family, the medical profession and the insurance industry and health insurance industry. They are preyed on by snake oil salesmen – medical and non-medical alike. They are the victim of excessive procedures and investigations and surgical procedures, which are damaging and aggravated the underlying cause. They suffer. They are labeled as neurotics and psychological. The ignorant, including some medical practitioners and a minority of rheumatologists, even deny the existence of the diagnosis.

The Copenhagen declaration in 1990, declared fibromyalgia to be a legitimate diagnosis and granted the diagnosis a specific ICD10 – code – International classification of disease – M.79.0.

 

Patients require expertise. They require reassurance. They deserve help.

They need to understand that their help will not be miraculous. However, understanding the pathology, and the pathogenesis will provide major benefit to the extent of the disease.

 

The practitioner needs to understand that patience is required. Failure to help the patient does not reflect a failure of the practitioner. It simply means that the disease is resilient. This will prevent patient movement from practitioner to practitioner, understanding that the practitioner is simply trying to do the best to help the individual patient concerned.

The problem is the disease and not a deficiency of either the patient or the practitioner.

 

 

David Gotlieb                                     
MB ChB(Cape Town) FCP(SA)
Rheumatologist

 

emancipationThe Emancipation Proclamation - Abraham Lincoln and his cabinet 1865

 

References

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  2. Peter Paul Rubens. The Three Graces. c.1636-1638. Oil on canvas. Museo del Prado, Madrid, Spain
  3. If You Have to Prove You Are Ill, You Can't Get Well: The Object Lesson of Fibromyalgia . Hadler, Nortin M. MD  Spine Volume 21(20), 15 October 1996, pp 2397-2400

  4. "Fibromyalgia” and the Medicalization of Misery 2003. The Journal of Rheumatology Editorial J Rheumatol 2003;30:1668-70

  5. Labeling  woefulness : the social construction of fibromyalgia. Hadler NM & Greenhalgh S. Spine 2004;30:1-4.

  6. Pain Is Real; Fibromyalgia Isn’t The Journal of Rheumatology 2003; 30:8

  7. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia. Arthritis and rheumatism, volume 33, number 2 (February 1990)

  8. US Supreme court justice Potter Stewart  Jacob Ellis v. Ohio, 378 U.S. 184 (1964)

  9. A survey of 368 patients with Arthritis to evaluate Impact on daily life and treatment strategies. J Gotlieb. Eskom Science Expo 2006

  10. Breivik H Collett B, Ventafridda V et al. Survey of chronic pain in Europe.  Prevalence impact on daily life and treatment.  European Journal of pain.  2006:10: 287- 333

  11. Geisser ME, Casey KL, Brucksch CB, Ribbens CM, Appleton BB, Crofford LJ: Perception of noxious and innocuous heat stimulation among healthy women and women with fibromyalgia: association with mood, somatic focus, and catastrophizing. Pain 2003, 103:243-250.

  12. Functional magnetic resonance imaging.Gracely et al. Arthritis Rheum. 2002;46:1333-1343.
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  14. Stress, the stress response system, and fibromyalgia Manuel Martinez-Lavin. Arthritis Research & Therapy 2007, 9:216

  15. SARZI-PUTTINI et al.: SYMPATHETIC ACTIVITY AND FIBROMYALGIA. Ann. N.Y. Acad. Sci. 1069: 109–117 (2006)

  16. Musculosketal symptoms and non-REM sleep disturbance in patients with "fibrositis syndrome" and healthy subjects H Moldofsky, P Scarisbrick, R England and H Smythe  Psychosomatic Medicine, Vol 37, Issue 4 341-351 1975 

  17. The psychological profiles of fibromyalgia.  Dissertation.  Catherine  Govender University of Pretoria. 2005.

  18. Lyddell C, Meyers OL. The prevalence of fibromyalgia in a South African community [abstract]. Scand J Rheumatol 1992;Suppl 94:8

  19. Fibromyalgia in Maori and European New Zealanders. APLAR Journal of Rheumatology. 5(1):1-5, 2002. KLEMP, Patrick, WILLIAMS, Sheila et al

  20. White KP, Speechley M, Harth M, Ostbye T. The London Fibromyalgia Epidemiology Study: The prevalence of fibromyalgia in London, Ontario Arthritis Rheum 1996;39 Suppl:S212.

  21. Fibromyalgia Syndrome in an Amish Community: A Controlled Study to Determine Disease and Symptom Prevalence  KEVIN P. WHITE and JOHN THOMPSON J Rheumatol 2003;30:1835–40

  22. Penrod JR, et al Health service costs and the determinants in woman with fibromyalgia. Journal of rheumatology.  2004; 31:1391 - 1398

  23. Berger et al. Int J Clin Pract. 2007;61:1498-1508; Brandenburg  et al. APS 2007.  
  24. Wolfe at al.  Journal of Rheumatology 1997. 24:11718. Work and disability status of persons with fibromyalgia

  25. Burckhardt et al.  Fibromyalgia and quality of life: a comparative analysis.  Journal of rheumatology 1993; 20:475- 479

  26. Fibromyalgia patients fight insurers over medication coverage Sunday, July 13, 2008 By Steve Twedt, Pittsburgh Post-Gazette Stacy Innerst/Post-Gazette

  27. Buskila  et al. Increased rates of fibromyalgia following cervical spine injury: a controlled study of 161 cases of traumatic injury.  Arthritis and rheumatism 1997; 40:446-552

  28. Moldofsky et al: litigation, sleep, symptoms and disabilities in post accident pain of fibromyalgia.  Journal of rheumatology1935 --1940, 1993)
  29. Goldenberg et al. JAMA. 2004;292:2388-2395
  30. ; Wolfe et al. Arthritis Rheum. 1990:33:160-172
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  32. Arnold. M., et al.  Pain 2005; 119:5 – 15
  33. Milnacipran.  Journal of rheumatology 2005; 32:1975 – 85
  34. Crofford L, et al Arthritis and Rheumatism 2005; 52: 1264 – 1273.
  35. Journal of pain, volume 10, 5, 2009: 542 – 552.
  36. The Copenhagen decleration Lancet:340:663 – 664,1992

 
obamaThe big question
 -
Does Barak Obama owe it all to
Fibromyalgia

?
 
 


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Dr David Gotlieb
drdoc on-line
Rheumatologist
CapeTown
December 2009