Spiritual Stability?

People who are spiritual are more likely than atheists or the religious to be mentally unwell, according to a new study by University College in London.

They are also more likely to have used or abused drugs, to experience anxiety, neurosis or phobias and have ‘abnormal eating attitudes.’

Nearly 7,500 randomly selected men and women (average age of 46) were interviewed. They were asked about their spiritual or religious beliefs and their psychological state.

Of the participants, 35 per cent had a religious understanding of life, 19 per cent were spiritual but not religious and 46 per cent were neither religious nor spiritual.

Religious people and atheists were on par in regards to prevalence of mental disorders, but the religious were less likely to have ever used drugs or be a heavy drinker.

However, the spiritual people  were 50 per cent more likely to have an anxiety disorder, 72 per cent more likely to suffer from a phobia and 77 per cent more likely to have a drug dependency.

But, it is not all bad news for believers: other studies that have found performing religious or spiritual practices provides physical and psychological benefits and helps people to integrate intellectually and emotionally.

“Transcendent spiritual and religious experiences have a positive, healing, restorative effect, especially if they are ‘built in,’ so to speak, to one’s daily, weekly, seasonal, and annual cycles of living,” said Ellen Idler, acting  dean  of  Social  and  Behavioural  Sciences  at  Rutgers  University, in a paper titled The Psychological and Physical Benefits of Spiritual/Religious Practices.

As for the latest study, published in British Journal of Psychiatry, the researchers concluded that: “People who have a spiritual understanding of life in the absence of a religious framework are vulnerable to mental disorder.

“The nature of this association needs greater examination in qualitative and in prospective quantitative research.”

 

Fibro CONTROVERSY

There is much debate about both the usefulness and safety of opioids as a medication for FM sufferers. Many health care professionals and researchers feel that there is little evidence that opioids actually provide significant pain relief for those suffering with FM. Others are concerned about the potential for tolerance and addiction associated with long-term opioid use. Yet, many of us find that opioids are highly effective pain relievers, and work to relieve persistent symptoms of widespread pain and muscle stiffness.

What are Opioids?
Opioids are a class of drug used to relieve symptoms of severe pain. More commonly known as narcotics, opioids are named after opium, a product found inside of the opium poppy plant. Natural opium has been used for hundreds of years to treat symptoms of severe pain and illness. Some opioids are made from this natural opium, while others are made synthetically from different chemicals.

Most of us associate opioids with the treatment of acute pain, like when you get your wisdom teeth pulled at your dentist’s office. However, opioids can also be used on a regular basis to treat chronic pain. Some types of opioids used to treat FM include:

• oxycodone
• morphine
• fentanyl

Do Opioids Help to Relieve Fibromyalgia Pain?
The efficacy of opioids in FM pain relief is one of the key components to the controversy surrounding opioid use. Though patients claim that opioids provide them with significant symptom relief, some health care providers disagree. There is some research that shows that opioids are indeed helpful for relieving FM pain. A recent study performed on long-acting opioids, including oxycodone, showed that FM sufferers gained great relief from long-term use of opioids. Users reported a 38% average reduction in pain symptoms and also experienced:

• fewer sleep disturbances
• less anxiety and depression
• increased mobility and enjoyment of life

However, another study published discourages long-term use of opioids for treating FM pain. In a review of charts at a multidisciplinary FM clinic, researchers found that 32% of patients were taking opioids (i.e., Vicodin, Percocet, OxyContin,) with more than 2/3 of them on strong ones.

Researchers identified several characteristics that made people more likely to be on long-term opioids: lower education, unemployment, being on disability, current unstable psychiatric disorder, history of substance abuse and prior suicide attempts. They also say they “observed negative health and psychosocial status in patients using opioids.”

The paper supports the current medical opinion discouraging opioid use in fibromyalgia and concludes that prolonged use requires evaluation.

It is very common to hear doctors say that these drugs are ineffective in FM, but so far there is very little (and differing) research to go on. The patient community is divided, with some saying they don’t work and others saying they’re the only drugs that do anything. Response to opioids is variable.

Then the issues of abuse and addiction further complicate the matter, especially with doctors afraid of serious legal consequences for what may be considered improper prescribing.

Do Opioids Cause Addiction?
Despite their effectiveness, many patients and health care providers are concerned about the possibilities that opioids may cause tolerance, addiction and physical dependence in patients. Three major medical societies, the American Academy of Pain Medicine (AAPM), the American Pain Society (APS), and the American Society of Addiction Medicine (ASAM) have issued a joint consensus paper which clearly defines the frequently misunderstood terms addiction, tolerance,and physical dependence, and discusses their definitions in the context of opioid use in the treatment of pain.

“The addiction community was concerned because of inaccurate diagnosis. The pain community was concerned about over-diagnosis of addiction when it didn’t exist, and how this misdiagnosis interfered with treatment with opioids,”  said Edward Covington, MD, Director of the Chronic Pain Rehabilitation Program at the Cleveland Clinic and past president of AAPM, who was one of the paper’s authors. “Also we needed agreement about what is and what is not an addictive disorder.”

Tolerance: Tolerance is actually a typical response to any type of medical intervention. After about two weeks on a medication your body becomes “used to it,” and side effects caused by the medication begin to disappear. Opioid tolerance typically manifests as the disappearance of nausea and other side effects. However, some patients do notice that they begin to develop a tolerance to the pain relief provided by opioids. This does not always indicate that your body is becoming addicted to the medication. Other factors, such as muscle injury and central nervous system activity must also be taken into consideration. Also, tolerance is not the same thing as addiction –  it simply means that you may require a slight increase in the dosage of the opioid you are taking in order to gain the maximum benefits.

Physical dependence and tolerance are often confused with addiction.

Addiction: Addiction is a more worrying side effect of opioid usage. Dr. Covington noted that addiction is a primary, chronic, neurobiological disease that can be identified by the three “Cs” Craving or Compulsive use, loss of Control, and use despite adverse Consequences. Other behaviors that signal addiction include “drug seeking” behavior, taking multiple doses of medications, and an inability to take them on schedule, “doctor shopping,” frequent reports of lost or stolen prescriptions, isolation from friends and family members, and taking pain medications for sedation, increased energy, or to get “high.”  This can result in a multitude of side effects, both physical and psychological.

However, less than 0.5% of chronic pain patients develop a real opioid addiction. In an evidence-based review for Pain Treatment Topics, editor Stewart B. Leavitt, MA, PhD, summarised the findings of major research investigations of 24 clinical studies: the overall rate of prescribed opioid analgesic abuse or addiction in patients with pain was about 3.3%. However, fewer than 2 out of 1,000 (0.19%) patients without a current or past substance-use disorder experienced problems with opioids prescribed for pain.

According to the consensus paper definitions, physical dependence and tolerance are both normal responses to regular use of some prescribed medications, including opioids, and are not in themselves evidence of an addictive disorder.

“Unlike tolerance and physical dependence, addiction is not a predictable effect of [taking] a drug but an adverse reaction in biologically and psycho-socially vulnerable individuals.

“It is also important for healthcare professionals to recognise the difference between true addiction and “pseudo-addiction,” notes Albert Ray, MD, President of AAPM.

With pseudo-addiction, patients whose pain is under-treated appear to behave “like addicts” to get the pain relief they need. They may focus on getting more medication, for example, and appear to be engaging in drug-seeking behavior. But unlike a person with a true addictive disorder, however, once their pain is properly managed, these behaviors stop immediately.”

Withdrawal: Opioid use has also been debated because of the withdrawal symptoms that they often cause. Even patients that are not addicted to an opioid will likely experience disturbing withdrawal symptoms when they stop taking the drug. To avoid serious withdrawal symptoms, opioid use should always be tapered off gradually. Symptoms of opioid withdrawal include:

• yawning
• diarrhea
• goosebumps
• runny nose
• drug cravings
• anxiety
• insomnia

Most withdrawal symptoms should disappear within a week. However, symptoms of anxiety, insomnia, and craving may persist for a longer period of time.

This topic is worthy of further investigation and debate; however, the preponderance of available evidence suggests that establishing
medical policies or practices in pain management on a presumption of high rates of prescribed opioid-analgesic abuse or addiction could be misguided, resulting in added costs for healthcare delivery and the under-treatment of pain.

Healthcare providers should be reasonably assured that only a very small percentage of their patients with chronic pain, if any, will exhibit abuse/addiction when receiving long-term opioid analgesics. And, this would be especially so in those patients who have not experienced substance-misuse problems in the past.

Related articles

• Viewpoint: Are Doctors to Blame for Prescription-Drug Abuse? (ideas.time.com)
• The Accidental Addict (fibromodem.wordpress.com)
• Opioids and the Public’s Health (centerforhealthmediapolicy.com)
• Opioid Pain Relievers (healthcaredocs.wordpress.com)
• Pain Medications and the Risk of Addiction (everydayhealth.com)
• Painkiller addiction sweeping the U.S. (thehindu.com)
• Narcotic Abuse (iamaddicted2.wordpress.com)

 

You’ve Got Mail (Fibro Reminder)

Wake up

Receive wonderful text message from colleague (who read Scary With You is Better Than Scary Without You) full of support

Gotta email him

Check personal Facebook page

Check Fibromyalgia Awareness Day Facebook page

Answer questions and comments

Gotta email him

Check Twitter

Upload all competition entries to Pinterest

Read 56 e-mails

Answer emails

Gotta email him

Finally received email from Photoscramble

Spend 1.5 hours making and cropping screen shots, and trying to make the competition’s problems understood, then follow the short instructions passed to me

Clear browser cache (as instructed) – didn’t help anything except now I can’t get into the FibroModem Fibro Forum (so don’t be looking for me, there)

Fill shop order and walk to post office

Still haven’t emailed my colleague – getting very anxious → too much to do

Return, exhausted, to filthy house → too much stuff EVERYWHERE – really losing it now

32 more emails received while I was out?

Tidy kitchen

Make two comments on Forumotion Forum so I can have permission to ask how to get back into the Forum

Put on load of washing

Gotta email him

Tidy (sort of) bedroom → can’t calm myself down

Close door to spare room – way too much to do in there → can’t even look at it!

Prepared new page for blog to promote competition entries

Feeling extremely stressed out – really no reason to be stressed, I have nothing planned tomorrow at all. I can do all of this tomorrow. Too much in my head! MUST be the competition → really, really hope it all works! Too much!

Emailed colleague! (Not sure how, as I seem unable to put a full sentence together)

Related articles

• Announcing…FibroModem Fibro Forum (fibromodem.wordpress.com)
• Feeling Fibro Fotos TODAY! (fibromodem.wordpress.com)
• Feeling (VERY) Fibro (Fotos Competition) (fibromodem.wordpress.com)

 

Live(r)ly Noises

Today is MRI (Magnetic resonance imaging) day.

I received a phone call, from the place where it is all happening, telling me that, because the MRI is on my liver, I am not permitted to be sedated via IV, although I am permitted to have an oral sedative. (It seems that I have to be awake enough to breathe in when they tell me.)

An MRI is a scan used for a medical imaging procedure. It uses a magnetic field and radio waves to take pictures inside the body. It is especially helpful to collect pictures of soft tissue such as organs and muscles that don’t show up on x-ray examinations.  It is especially loud, too.

That is why I needed to be sedated – I can’t handle the noise. The term for this is “misophonia,” where sounds can cause severe reactions in people. For me it is the clicking of heels on pavement, a lawn mower, too many people talking at once, humming of a motor or heating system, a baby crying, the car radio when I enter a car…the list is endless. Even more alarming is an unexpected loud noise, such as a motorcycle or firecrackers. I realise that most people can find many of these sounds alarming, but for those with misophonia, the auditory nervous system is in overdrive. I believe that those of us with a hyper-aroused nervous system suffer universally from anxiety and not only do we experience a visceral response to violence, but to anything that startles or is grating to the ears and can raise our anxiety level.

Dr Aage Moller, the neuroscientist at the University of Texas who specializes in the auditory nervous system, believes there is “no known effective treatment”. Dr Moller “believes the condition is hard-wired, like right, or left-handedness, and is probably not an auditory disorder but a “physiological abnormality” that resides in brain structures activated by processed sound”.

My strategy (perhaps the only one) is to fill my day with lovely sounds that bring about joy instead of irrational fear, such as certain music, and listen to people who have soothing voices; but, tomorrow, I’m not going to have a choice.

So, half an hour before this MRI, I have been told to take 5 of my Valium by my GP. I think I’ll take a Panadeine Forte, too, for just in case.

How an MRI works

The MRI scan consists of a table that slides into a large cylinder. Inside the cylinder is a magnet that, when operated, creates a powerful magnetic field.

Soft tissue contains water molecules and the magnetic field acts upon microscopic substances (called protons) found in water. The magnetised protons in the soft tissue send out an echo in response to the MRI scan’s radio waves. A computer then organises these echoes into images.

The MRI scan operator (radiographer) will take cross-sectional images of my body from almost every angle.

And then I wait ‘til Monday to find out if a part of my liver goes the way of my gallbladder.

 

My Life has the Tendency to Fall Apart When I’m Awake

Do you think Ernest Hemingway (author of the quote in the title) had FM?

As we all know, even if we are lucky enough to sleep 10 hours a night, we are still fatigued and exhausted.

Research shows that with FM, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles may not heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with FM wake up feeling tired and fatigued.

The result: The body can’t recuperate from the day’s stresses – all of which overwhelms the system, creating a greater sensitivity to pain. Widespread pain, sleep problems, anxiety, depression, fatigue, and memory difficulties are all symptoms of FM (just in case you hadn’t noticed!).

Insomnia takes many forms — trouble falling asleep, waking up often during the night, having trouble going back to sleep, and waking up too early in the morning. Research shows that smoothing out those sleep problems – and helping people get the deep sleep their bodies need – helps fibromyalgia pain improve significantly.

But how?

Medications can help enhance sleep and relieve pain. But doctors also advocate lifestyle changes to help sleep come naturally:

• Enjoy a soothing (warm) bath in the evening.
• Brush your body with a loofah or long-handled brush in the bath.
• Ease painful tender points with a self-massage device (like a tennis ball).
• Do yoga and stretching exercises to relax.
• Listen to calming music.
• Meditate to tame intrusive thoughts and tension.
• Sleep in a darkened room. Try an eye mask if necessary.
• Keep the room as quiet as possible (or use a white-noise machine).
• Make sure the room temperature is comfortable.
• Avoid foods that contain caffeine, including teas, colas, and chocolate.

Therapies to Treat Insomnia When You Have Fibromyalgia

If you’re still having sleep problems, several therapies can help, including biofeedback, relaxation training, stress reduction, and cognitive therapy. A psychologist who specializes in sleep disorders can discuss these therapies with you. The therapies help people handle stress better, which helps control FM episodes, When you’re stressed out, FM tends to flare and you feel worse – that’s when you’re most likely to have insomnia, too.

Medications can also help ease FM pain at night, or directly treat insomnia. Medications to ease pain and improve sleep include certain types of antidepressants, anticonvulsants, prescription pain relievers, and sleep aids.

BUT, as we kept getting told (a lot!), no one therapy will control FM pain 100 per cent. So start to mix it up and use all the tools that are beginning to come to light.

Related articles

• A Magic Pill? Not! (fibromodem.wordpress.com)
• 12 Sleep Tips for Fibromyalgia Sufferers (lifeinthefibrolane.com)
• 32 Solutions for When You Can’t Sleep (greatist.com)

Fibro Fog Explained?

Pain and accompanying depression and anxiety might be reasons for the lack of working memory in patients with FM, according to a recent study.¹

On average, the patients with FM displayed inferior performance compared with controls based on accuracy and response time. These differences were statistically significant, due to a lot of medical gobbledygook (as follows, if you can understand it):

During n-back tasks, researchers utilized functional MRI to study activated and deactivated brain regions. The researchers also found significant relationships between the FM group and the controls when using the Beck depression inventory and Beck anxiety inventory as covariates (P<.01 for both).

Between-group analyses showed that within the working memory network, the inferior parietal cortex was associated with pain ratings that were mild (r=0.309, P=.049) and moderate (r=0.331, P=.034). Two-sample between-group analysis showed significantly higher activation in the controls than the FM group in the ventrolateral prefrontal cortex (VLPFC), the thalamus, middle temporal cortex and inferior parietal cortex (P<.05, FDR-corrected for multiple comparisons at the voxel level). The comparison also showed the left dorsolateral prefrontal cortex, right VLPFC and right inferior parietal cortex were related to depression and anxiety ratings.

Basically, FM patients showed reduced activation in several brain regions which may be associated with impairments in maintenance and manipulation of working memory. The working memory deficit may result from both pain itself and depression and anxiety associated with pain.

 

 

1. Forty-one women were enrolled in the study — 19 with FM and 22 healthy participants. The mean ages of the patients were 38.73 years and 38.27 years, respectively. The control group included volunteers who were screened for chronic widespread pain, generalized weakness, sleep disturbance and specific tender points. The FM patients were recruited from outpatient rheumatic clinics at five hospitals in South Korea. The mean disease duration for FM was 39.41 months, and those patients showed average tender points of 13.37. Seven FM patients reported taking antidepressants: six on 75 mg pregabalin once daily, and one on 75 mg pregabalin and 25 mg milnacipran once daily.

Another Butterfly

 

To save money, Mommy and I are only taking one suitcase (plus two carry-ons, of course!) to Bali. So, today I took my clothes over to her place (with only the normal amount of arguing).

Hmm, I think I’m beginning to get slightly anxious.

I don’t know why: it’s not like it actually matters if I forget anything – they have shops! I’m taking my lap-top, my phone, my camera, a letter to Customs (in case, they think I’m importing all my drugs!), the Fifty Shades trilogy to read by the pool, money and sunscreen. I mean, really? What else do I need?

I’ve painted my toe nails, gotten rid of the appropriate hair and organised some-one to pick up my mail. I mean, really? What else do I need to do?

So, why is my tummy doing flip-flops?

 

Sleep Searching

As most of us are really, really feeling, non-restorative sleep is a core symptom of FM. What would you give to get a good night’s sleep?

While it seems logical to assume that pain leads to disturbed sleep, there is increasing evidence that dysfunctional sleep leads to hyperalgesia (an increased sensitivity to pain) and allodynia (the experience of pain from a non-painful stimulation of the skin).¹ These symptoms are the classical features of FM.²

It cannot be coincidental that FM-like symptoms can be induced in healthy normal people by the deprivation of stage 4 (N3) sleep,³ leading to hyperalgesia, fatigue and bodily hypersensitivity.⁴  As such, it is reasonable to believe that the improvement of sleep patterns will be beneficial to us.

Sodium oxybate (SXB) is thought to reduce non-restorative sleep abnormalities. SXB is another name for GHB, a substance that is often illegally sold and abused. It is prescribed to prevent attacks of cataplexy (episodes of muscle weakness that begin suddenly and last for a short time) in patients who have narcolepsy (a sleep disorder that may cause extreme sleepiness, sudden uncontrollable urge to sleep during daily activities, and cataplexy). Sodium oxybate is in a class of medications called central nervous system depressants. It has been marketed under the name Xyrem, and is approved in the USA, Canada and Europe for the treatment of symptoms in narcolepsy. The way that SXB works to treat narcolepsy is not known.

Results from a recent international phase 3 trial,⁵ combined with findings from previous phase 2 and 3 studies, provide supportive evidence that SXB therapy offers important benefits across multiple symptoms in patients with FM.

573 patients with FM (according to the 1990 criteria) were enrolled at 108 centres in eight countries. Subjects were randomly assigned to placebo, 4.5g or 6g of SXB per night. Assessments were made in the areas including reduction in pain, function, sleep quality, effect of sleep on function, fatigue, tenderness, health-related quality of life and the patients’ impressions of change in overall wellbeing.

The proportion of patients who experienced more than or equal to 30% pain reduction was 42.0% for 4.5g SXB and 51.4% for 6g SXB. Quality of sleep improved by 20% for 4.5g SXB and 25% for 6g SXB. Sounds good, right?

Adverse effects included nausea, dizziness, vomiting, insomnia, anxiety, somnolence, fatigue, muscle spasms and peripheral oedema (the swelling of tissues, usually in the lower limbs, due to the accumulation of fluids) in less than 5% of patients. Nothing we haven’t experienced before, right?

So bring on the clinical trials…

 

 

 

1. Lautenbacher S, Kundermann B, Krieg JC. Sleep deprivation and pain perception. Sleep Med Rev 2006;10:357–69; Kundermann B, Spernal J, Huber MT, et al. Sleep deprivation affects thermal pain thresholds but not somatosensory thresholds in healthy volunteers. Psychosom Med 2004;66:932–7; Roehrs T, Hyde M, Blaisdell B, et al. Sleep loss and REM sleep loss are hyperalgesic. Sleep 2006;29:145–51; and Moldofsky H. Rheumatic manifestations of sleep disorders. Curr Opin Rheumatol 2010;22:59–63.
2. Wolfe F, Smythe HA, Yunus MB, et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum1990;33:160–72.
3. Moldofsky H, Scarisbrick P, England R, et al. Musculosketal symptoms and non-REM sleep disturbance in patients with “fibrositis syndrome” and healthy subjects. Psychosom Med 1975;37:341–51.
4. Roehrs T, Hyde M, Blaisdell B, et al. Sleep loss and REM sleep loss are hyperalgesic. Sleep 2006;29:145–51.
5. Spaeth M, Bennett RM, Benson BA, Wang YG, Lai C and Choy EH. ‘Sodium Oxybate Therapy Provides Multidimensional Improvement in Fibromyalgia: Results of an International Phase 3 Trial.’

Related articles

• Scientists ‘can stop people tossing and turning’ – and finding may offer cure for teeth-grinding while we sleep (dailymail.co.uk)
• 10 Health Conditions That Disrupt Sleep (everydayhealth.com)

Found It! Just When You Thought One was Enough…

There was quite a bit of discussion after the Take A Breath post. One of the questions that arose was about what other conditions did FM sufferers have to endure?

So, I remembered that during my previous research, I had come across some of this information – so, off I went to sift through all my downloads and page histories. And I found it!

There are specific conditions which are frequently comorbid (occurring simultaneously) with FM, including osteoarthritis, autoimmune disease, lupus, myalgic encephalomyelitis/chronic fatigue syndrome, migraines, irritable bowel syndrome, sleep problems, mood disturbances, nueroendocrine disorders, and hypothyroidism.¹ Patients with FM were 2.14 to 7.05 times more likely to have one or more of the following comorbid conditions: depression, anxiety, headache, irritable bowel syndrome, chronic fatigue syndrome, systemic lupus erythematosus, and rheumatoid arthritis.²

A 2007 survey showed the following prevalence of comorbid disorders:³

• Low back pain – 63%
• Recurrent headaches – 47%
• Arthritis – 46%
• Muscle spasm – 46%
• Tingling – 46%
• Balance problems – 45%
• Irritable bowel syndrome – 44%
• Numbness - 44%
• Chronic fatigue – 40%
• Bloating – 40%
• Depression – 40%
• Anxiety - 38%
• Sinus problems – 37%
• Tooth disorders – 32%
• Restless legs – 32%
• Tinnitus – 30%
• Jaw pain – 29%
• Bladder problems – 26%
• Rashes – 25%

Upon examination, no structural changes or muscular inflammation is detectable despite a widespread decreased pain threshold and peripheral sensitization indicative of changes in pain pathways.

Another site I found merely listed comorbid conditions and symptoms, without any statistics or references but, for the sake of completeness, here they are:

• Allergy
• Ankylosing spondylitis
• Autonomic Disturbances
• Blurred vision
• Body temperature changes
• Bowel disturbances, Leaky Gut Syndrome (LGS) and Small intestinal bacterial overgrowth (SIBO)
• Bruising
• Bruxism
• Candidiasis
• Cardiovascular disturbance (POTS and NMH)
• Chemical Sensitivities
• Cognitive Dysfunction
• Cold intolerance
• Constipation
• Depression or anxiety, reactive
• Disordered sleep
• Dizziness
• Fatigue/malaise
• Flu-like symptoms
• Food Intolerance
• Gastrointestinal distress
• Hearing loss,
• Hypothyroidism
• Idiopathic chest pain
• Idiopathic edema
• Impotence
• Insomnia as a primary condition to FM
• Interstitial cystitis
• Irritable bladder
• Irritable bowel syndrome and other abdominal symptoms
• Livedo reticularis (mottled skin).
• ME/CFS (CFID)
• Migraine or severe headache
• Muscle, stiffness
• Muscle Weakness
• Muscles, uncoordinated
• Myofascial pain syndrome
• Neuralgia
• Neuropathy
• Non-restorative Sleep
• Oral ulcers (secondary to dry mouth)
• Pelvic dysfunction
• Piriformis syndrome (causing symptoms of sciatica)
• Shortness of breath (secondary to restricted chest wall motion, or cardiovascular insufficiency)
• Skin Lesions
• Raynaud’s phenomenon
• Rheumatoid arthritis
• Restless Leg Syndrome and its counterpart periodic limb movement during sleep
• Sexual dysfunction
• Seizure
• Sjögren’s
• Systemic Lupus Erythematosus
• Tinnitus
• TMD/TMJ
• Vulvodynia

Scary looking lists, aren’t they? The conditions/symptoms in purple are mine. What’s everyone else got? (but if you name it, you have to explain the condition – another opportunity to learn!)

There are several conditions which mimic FM and should be ruled out and/or treated.⁴ They include hypothyroidism, polymyalgia rheumatica, autoimmune disorders, hepatitis C, sleep apnea, chiari malformation, and celiac disease.

1. Clauw DJ, Crofford LJ. Chronic widespread pain and fibromyalgia: what we know, and what we need to know. Best Pract Res Clin Rheumatol. 2003;17:685-701; and McBeth J, Silman AJ, Gupta A, Chiu YH, Ray D, Morriss R, Dickens C, King Y, Macfarlane GJ.  Moderation of psychosocial risk factors through dysfunction of the hypothalamic-pituitary-adrenal stress axis in the onset of chronic widespread musculoskeletal pain: findings of a population-based prospective cohort study.  Arthritis Rheum. 2007 Jan;56(1):360-71.
2. Weir P, Harlan GA, Nkoy FL, Jones SS, Hegmann KT, Gren LH, Lyon JL. The Incidence of Fibromyalgia and Its Associated Comorbidities: A Population-Based Retrospective Cohort Study Based on International Classification of Diseases, 9th Revision Codes. JCR: Journal of Clinical Rheum. 2006 June; 12 (3): 124-28.
3. Bennett RM, Jones J, Turk DC, Russell IJ, Matallana L.  An internet survey of 2,596 people with fibromyalgia. BMC Musculoskelet Disord. 2007 Mar 9;8:27; and Kato K, Sullivan PF, Evengard B, Pedersen NL. Chronic widespread pain and its comorbidities: a population-based study. Arch Intern Med. 2006;166:1649-1654.
4. Clauw DJ. Fibromyalgia. In: Loeser JD, Butler SH, Chapman CR, Turk DC, eds. Bonica’s Management of Pain, 4th edition. Philadelphia, Pa: Lippincott Williams and Wilkins. 2008.

If You Don’t Ask, You Don’t Get

Many people with FM continue to work full or part-time. But the chronic pain and debilitation (this is the word that was voted the most popular for the fatigue we feel) associated with FM often make working very difficult. If you are employed, it’s important to learn about managing the symptoms and coping with pain and debilitation.

Can People With Fibromyalgia Work?

By self-managing fibromyalgia pain and controlling daily stress, many people with FM can do almost anything they choose, by making simple modifications to your workplace that allow you to continue working.

What Type of Workplace Changes Can Help Someone With Fibromyalgia?

First, openly discuss your condition with your boss. Talk about the symptoms of pain, fatigue, and stiffness. Explain how you may have good days and bad days.

Explaining will give people at work a better idea of what you are feeling each day. Ask your boss if you can take rest periods on bad days. Or ask if you can take work home if you are feeling fatigued. Ask if you can come in on Saturday if you miss a day of work to make up the lost time and income. In addition, ask if you can put a cot in your office for a brief nap at lunchtime. Taking a midday nap helps many people with fibromyalgia and other chronic health conditions function on the job.

Are There Workplace Modification Guidelines for People With Fibromyalgia?[i]

To address concentration issues, employers should consider:

• providing written job instructions when possible
• prioritizing job assignments and providing more structure
• allowing flexible work hours and allowing a self-paced workload
• allowing periodic rest periods to reorient
• providing memory aids, such as schedulers or organizers
• minimizing distractions
• reducing job stress

To address depression and anxiety, employers should consider:

• reducing distractions in the work environment
• providing to-do lists and written instructions
• reminding the employee of important deadlines and meetings
• allowing time off for counseling
• providing clear expectations of responsibilities and consequences
• providing sensitivity training to coworkers
• allowing breaks to use stress management techniques
• developing strategies to deal with work problems before they arise
• allowing telephone calls during work hours to doctors and others for support
• providing information on counseling and employee assistance programs

To address fatigue and weakness, employers should consider:

• reducing or eliminating physical exertion and workplace stress
• scheduling periodic rest breaks away from the workstation
• allowing a flexible work schedule and flexible use of leave time
• allowing the employee to work from home
• implementing ergonomic workstation design

To address migraine headaches, employers should consider:

• providing task lighting
• eliminating fluorescent lighting
• providing air purification devices
• allowing flexible work hours and work from home
• allowing periodic rest breaks

To address issues associated with sleep disorders, employers should consider:

• allowing flexible work hours and frequent breaks
• allowing the employee to work from home

My employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night when I seem to be less distracted) however none of these have worked on a consistent basis. So far, I cannot see how I can maintain employment with FM.

If you have tried different jobs and are unable to work, you might consider applying for disability. It can be a long and arduous journey, dealing with our Human Services departments and disability may be difficult to get because of rules about work capacity.

Can I Get Disability Because of Fibromyalgia?

In Australia, a person must have an impairment rating of 20 or more (under the impairment tables in the Social Security Act (Cth) 1991) to receive the Disability Pension.

The Americans with Disabilities Act has a general definition of disability that each person must meet. Therefore, some people with FM will have a disability under the ADA and others will not.

Because fibromyalgia is extremely hard to diagnose and there are no laboratory tests to prove the ailment to a third-party, it’s important that you do your homework before you apply for disability. And remember that you may be denied but, there are avenues to appeal decisions. Be aware of your rights! And check, and double-check, time limits!

How Do I Apply for Disability?

To apply for disability benefits, call your Social Security/Centrelink office. Much of the information may be provided over the phone, by mail, or the Internet. You will be asked specific questions about how you have trouble with daily activities. And you will need to be as specific as you can, describing your limitations and why you cannot work. You will be asked to give the names and addresses of your doctors. The Social Security office will contact each one for records.

What Other Proof Must I Provide for Disability?

Describing your fibromyalgia symptoms alone will not qualify you for Social Security disability. You have to be specific about signs and physical findings related to fibromyalgia and pain and how that impacts your ability to work. The Social Security staff will consider all your symptoms, including pain.

All of this information considered together must lead to a conclusion that you are disabled before you will be granted disability with benefits.

What if I’m not Approved for Disability?

It is common that fibromyalgia patients are not approved for disability, especially with the first application. If you are not approved, you’ll have the right to appeal. Some patients find it necessary to have the help of a lawyer during the appeal process. Although it may increase your costs, the chance your case will be approved is usually better if you have legal counsel.

I have applied (as some of you may know) and was rejected because it was decided that I do not have an impairment rating of 20 or more. As such, I have started the initial phase in the appeal process.

What Type of Documentation Is Needed to Get Disability?

It’s important to get detailed documentation – reports – from your doctors, including psychologists, at the onset of your illness. Have your doctors submit documentation of all prescribed medications, therapies, and lifestyle remedies necessary to resolve your fibromyalgia symptoms. You should also be evaluated by a fibromyalgia specialist, usually a rheumatologist. This doctor will give a detailed assessment of your impairment along with a list of the many tests and treatments used in your condition.

This seemed to be the hardest part so far. My rheumatologist held on to the incomplete report for 8 weeks before Mommy and I camped out in his office and reported him to the Hospital administration. Finally, it took less than 15 minutes for him to complete the required paperwork. Thanks Doc, for all the stress and worry for no reason.

I sent the requested reports (from him and me), copies of all correspondence between my medical team and a cover letter to Centrelink, on Friday. Although I have linked my letter here, I do not know if it will be successful, so if you choose to use parts of it, I cannot guarantee an outcome.

Wish me luck.

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[i] These lists come from the U.S. Department of Labour’s Job Accommodation Network. I do not believe that there is an equivalent list in Australia (yet!)