Tripping Over your own Legs

Restless leg syndrome is about 10 times more common in people with FM than those without, which might be just one reason we often report difficulty sleeping, according to new research.

RLSRestless leg syndrome is another condition doctors don’t totally understand; it causes people to want to move and stretch their legs constantly to relieve discomfort they feel deep in their thighs and calves.

Researchers at the University of Washington in Seattle describe their study of sleep quality in two groups. The first group consisted of 172 people, 93 per cent of them women, with FM and an average age of 50. The control group consisted of 63 people without FM, 56 per cent of them women, with an average age of 41. Both groups were asked a series of questions to assess their quality of sleep and level of insomnia. The results showed restless leg syndrome in 33 per cent of those with FM and just 3.1 per cent of those in the control group.

“Restless leg syndrome can be associated with a number of primary disorders, such as anaemia and kidney failure. I think this study suggests we should add fibromyalgia to the potential associations of restless leg syndrome,” says Nathaniel F. Watson, MD, one of the study authors and an associate professor of neurology at the University of Washington in Seattle.

“I think this is likely going to be new information to many. Restless leg syndrome is somewhat of an esoteric diagnosis that many providers may not be aware of.  They may not be asking their patients the right questions to get to the right diagnosis, so it may be something people have been experiencing, but didn’t know it was a treatable disorder,” Dr. Watson says.

“We do have good treatments for it,” he adds, such as ropinirole, or Requip, and pramipexole, or Mirapex, which are approved to treat restless leg syndrome. “[Medication] can vastly improve it in some instances. It can go away completely. It just depends on the patient.”

restless_leg_syndromeTheodore Fields, MD, an attending physician in rheumatology at Hospital for Special Surgery in New York City, says (and we know from personal experience) that data going back for years suggests that sleep and FM are tightly connected. He believes restless leg syndrome could be a factor in a subset of people with FM.

“It makes sense to me that any cause of insomnia can be related to fibromyalgia, which has been clearly shown to be related to lack of sleep. Periodic leg movements during sleep have been previously associated with fibromyalgia, and the results of this study are not unexpected,” Dr Fields says.

dogHe points out that the study used a self-administered questionnaire, which can be less accurate than a personal interview. He also says medications were not controlled for and researchers did not gather information on other medical issues or sleep problems, but he still believes the conclusion could be useful for patients and physicians.

“Restless leg syndrome is a condition that physicians may not routinely ask about, so this information may make it more likely they will begin to query patients about it.  Since it’s treatable, that’s an advantage for patients,” Dr Fields says.

People with FM who have leg discomfort that keeps them awake at night should mention it to their doctor to have it assessed and dealt with. “It’s reasonable to think that more continuous, longer, better quality sleep would have a positive impact on fibromyalgia, as it does on many medical disorders,” he says.


Dance of Life

biodance (1)Biodance, more commonly known as biodanza, literally means the dance of life.

It is described in Wikipedia as “a system of self-development that uses music, movement and positive feelings to deepen self-awareness. It seeks to promote the ability to make a holistic link to oneself, emotions and to express them. Biodanza also claims to allow one to deepen the bonds with others and nature and to express those feelings congenially.”

Biodanza was created in Chile in the 1960s and is now practiced in at least 30 countries.

343d9da3-f609-4f36-b258-d5dfcede22c9To analyse the effects of an aquatic biodance based therapy on sleep quality, anxiety, depression, pain and quality of life in FM patients, researchers assigned 59 patients to 2 groups: experimental group (aquatic biodance) and control group (stretching), for 12 weeks.

Significant differences in the experimental group were seen on sleep quality (49.7%), anxiety (14.1%), impact of fibromyalgia (18.3%), pain (27.9%), and tender points (34.4%).

This video discusses and demonstrates what Biodanza is all about.

In this next video, Biodanza is performed in the water.  Although the voice on the video is speaking Portuguese, you can still see what Aquatic Biodanza looks like even if you don’t understand Portuguese.

Anyone tried this one yet?


Free Falling

recent study linked falls in people with FM to poor sleep the previous night.

Frequency of falls in the last 6 months in 48 FM and 32 ‘normal’ subjects were recorded. The number of falls in the last 6 months was significantly higher in the FM group. Worse postural performance and fall risk found in the FM patients were found to be related with the sleep quality in the last 24 hour period and level of fatigue.

falling-10This research supported earlier work suggesting that falls were especially common with our condition and sought to find out why. Researchers determined that there’s a significant increase in fall risk after a bad night of sleep that leaves you fatigued. Is there any other kind of sleep for us?

You should also note that FM is believed to predispose you to osteoporosis, which increases the likelihood of breaking a bone in a fall. Your doctor can help you determine how healthy your bones are and whether you need to make dietary changes or should consider osteoporosis medications.

Do you fall frequently?


More Sleep Confusion

I haven’t ‘met’ (well, I haven’t actually met any of you, but you know what I mean) any one of us who doesn’t suffer from an absolute heap of sleep problems. But it appears, according to a new report from BMC Musculoskeletal Disorders, that link may be worse than previously thought. In fact, patients with FM may be plagued with even more sleep problems than other patients with chronic illnesses.

sleep manThe report found that 88% of patients struggle with sleep, and 66% of those people have more than one sleep problem such as falling or staying asleep. The effects of sleep difficulties on patients’ quality of life appeared to be more severe for FM patients compared to patients with other disorders like back pain or osteoarthritis.

141. sleep deprivationThis suggests that addressing patients’ sleep issues could be a crucial component of managing FM, although another study (that I have reported about previously) suggests that there is absolutely no link between the amount of sleep and level of pain that we experience.

Previous research has also shown that having insomnia or sleep issues may increase your risk of developing fibromyalgia and other chronic pain conditions.

Hmmm…it looks like previous research can show absolutely anything it wants to!!!!


Living Rent-Free in Your Head

To continue, in a more research-mannered way, my recent discussions about headaches – Fibromyalgia sufferers are more vulnerable to headaches as compared to those who do not suffer from this syndrome. Moreover, FM chronic headaches can be disruptive and hamper everyday activities (and don’t we know it!)

Statistics show that about 76% of FM patients who sought treatment reported that they suffered from chronic headaches. Of these, 84% reported severe or significant impact caused by their headaches.

There are three different types of general headaches that are linked to FM: Tension Headaches, Migraines and Combination headaches.

FM tension headaches are the most common. They are caused by muscle spasms or contraction in the head, neck, jaw, shoulders and upper back. The muscle spasm typically originates at the base of the neck and works its way upwards all the way to the temples. FM patients describe these headaches as an extreme tightness encompassing the head that can cause pain upon movement or restrict head movement. These headaches typically last a couple of hours and can range from moderate to severe.

FM Migraine Headaches, also known as vascular headaches, are caused by constrictions of the blood vessels. Fatigue, stress and illness can all cause the blood vessels in the head and neck to dilate and constrict, causing severe pain, dizziness, eye pain and nausea. Migraine headaches also can move around your head at times. They can feel like incredibly painful pressure is building inside the skull in specific location points for no apparent reason.

Combination Headaches, which are a combination of tension headaches and migraine headaches, are also commonly seen in FM sufferers.

Fibromyalgia headaches are caused by several different factors:

  • Sleep Disorders: People who suffer from migraines often show significantly disturbed sleep patterns. FM also often causes sleep related disorders including sleep apnea. This could be one of the reasons who so many FM patients suffer from morning headaches. Moreover, sleep disorders also tend to increase the frequency and the severity of headaches.
  • Low Serotonin Levels: Recent studies that have been done show that migraine headaches and FM may be caused by the same factors. This implies that migraines and FM are in fact concurrent illnesses and it contradicts the previously held theory that migraines are actually one of the symptoms of the syndrome. People who suffer from migraine headaches have reduced levels of serotonin in the brain. This low-level of serotonin impedes the ability to communicate pain signals effectively, resulting in increased and even severe pain.
  • TMJ or Temporomandibular Joint Disorder: A large number of people with FM also suffer from Temporomandibular Joint Disorder or TMJ. This is a disorder that causes bruxism or grinding of the teeth as well as joint and muscle pain in the face, neck and jaw, all of which can also contribute to headaches.
  • Low Magnesium Levels: People who suffer from migraines showed low levels of magnesium.
  • Stress:  Stress is considered to be a primary causal factor in FM and a key component to what causes headaches. Stress can lead to vascular contraction and muscle tightness contributing to both Migraine and Tension headaches.

While there is no conclusive proof regarding FM specific aggravating factors, there are several potential causal relationships. Fatigue, stress, anxiety and sleeping problems are thought to increase the frequency and severity of headaches.  Muscle spasms, myofascial pain and tender points in the neck, which are common symptoms of FM, are also thought to trigger severe headaches.

So, in addition to all over muscle and body aches, it appears that most of us are lucky(?) enough to experience headaches or migraines more often than before the onset of FM.  As many of us know, adding headaches to the already complex dynamics of FM make it even more difficult to deal with. FM headaches exacerbate the existing pain, fatigue and mental distress that characterize the condition.

 Related articles

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.’

Sleep Deprivation Torture

Being a relative newbie to the FM world, I don’t know if this is normal or not – but it seems to be that EVERYONE is discussing sleep…or lack of it, to be more precise. Is this a seasonal cycle? Or is it just coincidental that we ALL are suffering from (and discussing) sleep deprivation right now?

So what happens to our bodies when we don’t get enough sleep?

Dr. Rafael Pelayo of Stanford University’s Sleep Disorder Clinic doesn’t mince words:

This is what happens to your body if it’s deprived of sleep:

  • You have problems with memory and concentration.
  • You have problems finding the right word.
  • You get irritable – you think so?
  • Neurotransmitters in the brain become altered.
  • You become more susceptible to infection.
  • At its extreme, sleep deprivation can lead to death.

Depression and Low Self-Esteem

Sleep-deprived people have longer illnesses, more severe depression, and greater fatigue than those who aren’t sleep deprived. Other studies link sleep deprivation with self-esteem problems. Getting good sleep and curing insomnia helps to fight depression and increase self-esteem.

Weight Gain

If you’re losing sleep your body mass index (BMI) is likely to increase, and so is your waist circumference (hey! where’s the part about my arse?). According to Professor Francesco Cappuccio of Warwick Medical School, your risk of becoming obese is almost doubled.

Sleep deprivation increases appetite through hormonal changes. Specifically, more of the appetite-increasing ghrelin is produced when you’re not getting good sleep; less of the appetite-suppressing leptin is produced. Sleep deprivation causes you to eat more.

Physical Appearance (other than weight)

I can’t believe that I’m publishing this photo – but please, tell me my appearance isn’t changed because of those big black circles under my eyes!

Despite study participants being convinced that their looks were affected by their lack of sleep, Alex Gardner of the British Psychological Society and emeritus Professor of Dermatology Ronnie Marks of the University of Wales found that sleep deprivation did not alter study participants’ physical appearance – tell that to the black suitcases under my eyes! Nonetheless, the study participants who were sleep deprived felt self-conscious about their appearance and thought their skin showed their lack of rest. Getting good sleep makes you feel better about yourself — but doesn’t change how you look.

Memory Loss

Dr. Jeffrey Ellenbogen of the Harvard Medical School found that “sleep protects memories from interference.” The more quickly you fall asleep after studying for a test or learning a new skill, the more likely you’ll remember it later. If you learn new information and then go about your daily business, you’ll have about a 44% lower chance of retaining what you’ve learned. This research could be particularly helpful when you’re learning a new job. Getting good sleep helps your memory, while sleep deprivation damages it.

Intellectual Impairment

Researchers at the University of Virginia have found that lack of sleep can impair IQ and cognitive development. Sleep helps to organize memories, solidify learning, and improve concentration. Getting good sleep increases cognitive ability and the ability to relate to others.

Physical Impairment

According to the National Sleep Foundation, your body suffers when you don’t get enough good sleep. Your coordination and motor functions may be impaired, and your reaction time may be delayed. You could have reduced cardiovascular performance, reduced endurance, and increased levels of fatigue because of sleep deprivation. Tremors and clumsiness can also result.

Immune system

It doesn’t seem fair… Right when you are exhausted after a stressful move or a big project at work, you come down with a cold. That’s no accident – sleep is essential to the immune system. Without adequate sleep, the immune system becomes weak, and the body becomes more vulnerable to infection and disease.

Nervous system

Sleep is also a time of rest and repair to neurons. Neurons are the freeways of the nervous system that carry out both voluntary commands, like moving your arm, and involuntary commands, like breathing and digestive processes.

Recent studies have suggested that sleep downtime of the brain, so active during the day, may replenish dwindling energy stores that cells need to function, repair cellular damage caused by our busy metabolism, and even grow new nerve cells in the brain.

Hormone release

Many hormones, substances produced to trigger or regulate particular body functions, are timed to release during sleep or right before sleep. Growth hormones, for example, are released during sleep, vital to growing children but also for restorative processes like muscle repair.

Sleep deprivation can be dangerous not only to you but others, since it affects motor skills like driving. Chronic sleep deprivation is also thought to cause long-term changes to the body, which contribute to increased risk for obesity, diabetes and heart disease.

When you continuously don’t get the amount of sleep you need, you begin to pay for it in daytime drowsiness, trouble concentrating, irritability, increased risk of falls and accidents, and lower productivity.

So when is some-one going to help us?

Sweet Dreams Ahead?

An investigational insomnia drug, known as suvorexant, is reportedly ‘a new class of drug’ that works in a different way than other sleep meds – and could be THE answer for many of us having difficulty falling asleep or staying asleep through the night.

According to the results of two “pivotal” Phase III effectiveness trials, revealed June 13 at the Associated Professional Sleep Societies annual meeting, suvorexant:

  • Targets insomnia in a different way than other drugs. It was developed to help facilitate sleep by targeting and blocking the actions of the orexins, chemical messengers that originate from the hypothalamus (an important sleep centre in the brain) and help to keep you awake and alert. By blocking the orexin receptors, suvorexant supposedly helps to facilitate sleep.
  • Significantly reduced the time it took insomnia patients to fall asleep and increased the time they stayed asleep as early as the first night and at the three-month time point, compared to placebo.
  • Produced no serious observed drug-related adverse events in either trial with any dose of suvorexant. Reports of next day residual effects on memory, attention, perceptual & motor speed, etc. were not significantly more frequent in treated subjects vs. those given placebo.

Merck plans to file a New Drug Application (NDA) for suvorexant with the US FDA in later this year. If approved, it would be the first medicine approved in the new class of medicines – called ‘orexin receptor antagonists,’ for use in patients with difficulty falling or staying asleep. If approved, it could be your dream come true!

Ten Hours Sleep…and more

I slept 10 hours last night!

Was it the melatonin? Was it the Pilates class (and in case you’re wondering, yes! OW again!)? Was it the afternoon meditation session? Was it babysitting Z for a couple of hours? Was it taking my Lyrica earlier? Was it a mixture of CoQ10, Alpha Lipoic Acid and Eleuthera Root? Was it all my sex and fibromyalgia research? Was it because I had such a bad night’s sleep the night before?

Was it a mixture of all of the above and more?

See? That’s the problem – as FM sufferers, if we hear about something that helps another sufferer, we try it. Nothing wrong with that.*

If we hear about a multitude of things that help, we try them all. Nothing wrong with that.*

The problem arises when we try to work out what actually helps us, and what just happens to be coincidental… You won’t find me having a month in which I take melatonin, then stop to take only the Pilates class for a month, then do a month of Pilates AND melatonin, etc. and recording each result in a methodical and scientific way. I did try this for a short time – but I don’t have the time to waste. I want to feel better NOW!

If something helps some-one, I’m going to try it ASAP – don’t you? If I spent a month trying each ‘remedy’ alone, then a month doing them in pairs, then a month…any-one good at equations?

And, ultimately, it wouldn’t actually help… Somewhere along the line, I would have a night where I slept 10 hours – but this couldn’t be applied to anyone else because, as we all know, everyone’s fibromyalgia experience is different. Lucky us!

My point: don’t give up looking for what might work for you – it might be alternative and wacky, but it might work!

And don’t envy my 10 hours sleep – I woke up still wanting more!

* As long as we consult the appropriate health professional first!

P.S. Can you tell I’m trying to avoid doing the clothes washing? How many posts is that today?

Started One Place…Finished Elsewhere

And back from Pilates

…having first asked them to display some Awareness:

But this post isn’t about the Awareness Campaign, it’s about my lousy night’s sleep last night…you know that sleep where you feel that you’re only ‘drowsing’ (is that a real word?) in and out, where anything can and does wake you, where you open your eyes and you’re still too tired to move or get up but you can’t fall back to sleep properly, where it feels like hours but it’s only been 4 minutes since you looked at the clock, where you never feel refreshed; and where you still have highly vivid dreams.

I am assuming that all of this is because I didn’t take my zolpidem last night and went with the melatonin – but I fell asleep well enough, I just couldn’t stay asleep……And I’m so tired but, at least, I know why.

I have been involved in some very carefully plotted murders, ending up by me running into a court and interrupting, holding a milk carton, and telling them to wait in a very dramatic turn of events.Think black and white movie a la 12 Angry Men, but with loads of action scenes a la NCIS and Criminal Minds; then add strobe.

It’s very difficult to watch and it hurts my head and my eyes, but I can’t really do anything about it as it’s playing on the huge screen in my head.

I always wake up before I know what happens next – no matter how much I fight to get back to that place in the movie. I don’t know if I actually wake up or if I was dreaming in my dream of me dreaming and waking up. All I know is that when I finally wake up (properly), I feel like I have done some big time running and thinking!

It is with that background that I attended Pilates today. On my walk to the gym, my stomach muscles began protesting – how did they know where I was going? It’s been a week since the previous class, so I had thought that any left-over delayed onset muscle soreness would have disappeared – WRONG! the minute I tried to do anything from the table top position (hee! hee! aren’t I the expert?), my transversus abdominus and internal oblique muscles began to scream. I would have thought that I would have been able to do more (as compared the previous class) this week – WRONG again! Not only did everything hurt more but I seemed to be much more uncoordinated. My entire balance was off, way off! And the room was spinning before my eyes after every new movement.

Think this will turn me off it? Not yet, I’m going back Thursday evening – the stretching still felt amazing (at the time, anyway)!