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Specific limb: A brief look at ‘restless legs syndrome’

Those that know me well often comment that I have a general inability to sit still and that I am a ‘fidget’. (This is not necessarily a bad thing and in fact there are some positives to fidgeting that I outlined in a previous blog on bad behaviours that are sometimes good for you). There is certainly some truth to the observation that I fidget but sometimes the fidgeting is out of my control. Every few weeks my right lower leg appears to take on a life of its own and I will get strange (uncomfortable) sensations (such as tingling, itching, and aching, and occasionally cramp-like feelings) that force me to move my right leg and foot around. It only happens when I am in a resting and relaxing state and usually lasts about 30 minutes (but can occasionally last much longer). On occasions it disrupts my work and sleep but I find that just getting up and moving around is sometimes enough to alleviate the uncomfortable feelings.

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A few years ago I Googled my ‘symptoms’ and was surprised to find that I am not the only person who appears to experience such effects and that there is a whole medical literature on what has been termed ‘restless legs syndrome’ although in my case it would be in a singular rather than plural form). I’ve had the condition for about 15 years now and it may be related to some of the medication I take for an unrelated chronic degenerative health condition that I have. According to the Wikipedia entry on restless legs syndrome (RLS):

“The first known medical description of RLS was by Sir Thomas Willis in 1672. Willis emphasized the sleep disruption and limb movements experienced by people with RLS…The term ‘fidgets in the legs’ has also been used as early as the early nineteenth century. Subsequently, other descriptions of RLS were published, including those by Francois Boissier de Sauvages (1763), Magnus Huss (1849), Theodur Wittmaack (1861), George Miller Beard (1880), Georges Gilles de la Tourette (1898), Hermann Oppenheim (1923) and Frederick Gerard Allison (1943). However, it was not until almost three centuries after Willis, in 1945, that Karl-Axel Ekbom (1907–1977) provided a detailed and comprehensive report of this condition in his doctoral thesis, Restless legs: clinical study of hitherto overlooked disease. Ekbom coined the term “restless legs” and continued work on this disorder throughout his career. He described the essential diagnostic symptoms, differential diagnosis from other conditions, prevalence, relation to anemia, and common occurrence during pregnancy. Ekbom’s work was largely ignored until it was rediscovered by Arthur S. Walters and Wayne A. Hening in the 1980s. Subsequent landmark publications include 1995 and 2003 papers, which revised and updated the diagnostic criteria”.

As well as being referred to as RLS, it is sometimes referred to as Willis-Ekbom Disease or Willis-Ekbom Syndrome. Since being ‘rediscovered’ in the 1980s, there have been a lot of scientific papers published on the phenomenon although many of these are medical case studies (I don’t think my own experiences are extreme enough or strong enough to appear in any medical textbook. The Wikipedia entry on RLS provides a good summary of what is known medically and empirically:

“Restless legs syndrome (RLS) is a disorder that causes a strong urge to move one’s legs. There is often an unpleasant feeling in the legs that improves somewhat with moving them. Occasionally the arms may also be affected. The feelings generally happen when at rest and therefore can make it hard to sleep. Due to the disturbance in sleep, people with RLS may have daytime sleepiness, low energy, irritability, and a depressed mood. Additionally, many have limb twitching during sleep. Risk factors for RLS include low iron levels, kidney failure, Parkinson’s disease, diabetes, rheumatoid arthritis, and pregnancy. A number of medications may also trigger the disorder including antidepressants, antipsychotics, antihistamines, and calcium channel blockers. There are two main types. One is early onset RLS which starts before age 45 [years], runs in families and worsens over time. The other is late onset RLS which begins after age 45 [years], starts suddenly, and does not worsen. Diagnosis is generally based on a person’s symptoms after ruling out other potential causes… Females are more commonly affected than males and it becomes more common with age…Some doctors express the view that the incidence of restless leg syndrome is exaggerated by manufacturers of drugs used to treat it. Others believe it is an under-recognized and undertreated disorder…An association has been observed between attention deficit hyperactivity disorder (ADHD) and RLS or periodic limb movement disorder. Both conditions appear to have links to dysfunctions related to the neurotransmitter dopamine, and common medications for both conditions among other systems, affect dopamine levels in the brain”.

According to a review by Dr. Richard Allen and Dr. Christopher Earley in the Journal of Clinical Neurophysiology, RLS affects 2.5-15% of the US population. In another review on sleep disorder in the journal American Family Physician, Dr. Kannan Ramar and Dr. Eric Olson reported that RLS is typically characterized by four essential features: These are:

“(1) the intense urge to move the legs, usually accompanied or caused by uncomfortable sensations (e.g., “creepy crawly,” aching) in the legs; (2) symptoms that begin or worsen during periods of rest or inactivity; (3) symptoms that are partially or totally relieved by movements such as walking or stretching; and (4) symptoms that are worse or only occur in the evening or at night”.

Various online articles and papers report a variety of potential treatments based on the notion that RLS might be caused by a dopamine imbalance in the body. Some medics advise a regular sleep routine (such as that advised for those with insomnia), and cutting out the drinking of alcohol and the smoking of cigarettes. Pharmacological treatments include the use of drugs that are also used in the treatment of Parkinson’s disease such as L-DOPA and pramipexole, and the use of magnesium sulphate therapy (as reported in a 2006 paper in the Journal of Clinical Sleep Medicine – magnesium is known to be a natural muscle relaxant). In a 2011 issue of the journal Sleep Medicine, In an online article about RLS, Dr Michael Platt, author of the 2014 book Adrenalin Dominance, claims that RLS sufferers can be treated using a progesterone cream:

“Excess adrenalin during the night can cause restless leg syndrome. People often have associated symptoms also resulting from elevated adrenalin, such as teeth grinding, the need to urinate, and tossing and turning, and they often awaken in the morning with low back pain. Characteristically, RLS patients have an excess of adrenaline, may toss and turn all night, be quick to anger, might be workaholics, will usually have fibromyalgia (aches and pains – low back, side of the hips, and grind their teeth), they might drink too much, and will be hypoglycemic (sleepy between 3-4 p.m. or when in a car), and so on. There is an associated over-production of insulin and an under-production of progesterone…[By using a progesterone cream] I have had 100% success with eliminating RLS by getting hormones into balance, often within the first week. Patients feel more relaxed, they can sleep at night, rage disappears, and they can focus more easily”.

Dr. Luis Marin and his colleagues reported a different treatment for RLS altogether. They reported the case of a 41-year-old male RLS sufferer who after being on medication for RLS discovered his own solution – having sex. Following sex, the man reported that all RLS symptoms would disappear. Marin and colleagues speculated that the release of dopamine following orgasm might alleviate RLS symptoms. This appears to be a reasonable speculation given the findings of research published in the Journal of Neuroscience by Dr. Gert Holstege and his colleagues who examined brain activation at the point of ejaculation. In their paper they reported the similarity between ejaculation and using heroin in terms of brain activation:

“We used positron emission tomography to measure increases in regional cerebral blood flow during ejaculation compared with sexual stimulation in heterosexual male volunteers. Manual penile stimulation was performed by the volunteer’s female partner. Primary activation was found in the mesodiencephalic transition zone, including the ventral tegmental area, which is involved in a wide variety of rewarding behaviors. Parallels are drawn between ejaculation and heroin rush”.

It could well be that the increase in dopamine following ejaculation acts in a similar way to the medications that are given to RLS sufferers. Of all the treatments for RLS that I have read about, I think I know which one I would prefer!

Dr. Mark Griffiths, Professor of Behavioural Addiction, International Gaming Research Unit, Nottingham Trent University, Nottingham, UK

Further reading

Allen, R.P., & Earley, C.J. (2001). Restless legs syndrome: A review of clinical and pathophysiologic features. Journal of Clinical Neurophysiology, 18(2), 128-147.

Bartell S1, Zallek S. Intravenous magnesium sulfate may relieve restless legs syndrome in pregnancy. Journal of Clinical Sleep Medicine, 15, 187-188.

Chaudhuri, K.R., Appiah-Kubi, L.S., & Trenkwalder, C. (2001). Restless legs syndrome. Journal of Neurology, Neurosurgery & Psychiatry, 71(2), 143-146.

Ekbom, K., & Ulfberg, J. (2009). Restless legs syndrome. Journal of Internal Medicine, 266(5), 419-431.

Holstege, G., Georgiadis, J. R., Paans, A. M., Meiners, L. C., van der Graaf, F. H., & Reinders, A. S. (2003). Brain activation during human male ejaculation. Journal of Neuroscience, 23(27), 9185-9193

Leschziner, G., & Gringras, P. (2012). Restless legs syndrome. British Medical Journal, 344, e3056.

Marin, L.F., Felicio, A.C., & Prado, G.F. (2011). Sexual intercourse and masturbation: Potential relief factors for restless legs syndrome? Sleep Medicine, 12(4), 422.

Ondo, W. G. (2009). Restless legs syndrome. Neurologic Clinics, 27(3), 779-799.

Ramar, K; Olson, EJ (Aug 15, 2013). Management of common sleep disorders. American Family Physician, 88, 231–238.

Satija, P., & Ondo, W. G. (2008). Restless legs syndrome. CNS Drugs, 22(6), 497-518.

What’s bugging you? A beginner’s guide to Ekbom’s syndrome

It was only a few months ago that I watched the 2006 film Bug for the very first time. Directed by William Friedkin, it tells the story of a mentally ill drifter called Peter Evans (with a great performance by Michael Shannon). Evans ends up having a sexual relationship with Agnes White, a bisexual alcoholic junkie (played surprisingly well by Ashley Judd). During the film, Peter confides in Agnes his belief that he has a colony of microscopic bugs infested one of his molar teeth (and then in one ‘memorable’ scene starts pulling his own teeth out). Evans’ paranoia becomes increasingly erratic and becomes a shared belief with White (who also comes to believe that they are both infested with microscopic bugs; this sharing of a delusional belief is known as a ‘folie à deux’ [French for ‘a madness shared by two people’, a shared psychosis] and would make a good blog topic). However, today’s blog focuses on imagined bug infestation (i.e., delusional parasitosis) that is known in psychological and psychiatric terms as Ekbom’s syndrome (named after the Swedish neurologist Karl Ekbom who first described the condition in a number of published papers in the late 1930s).

As you have probably gathered from my quick film synopsis above, Ekbom’s syndrome (ES) is a type of psychosis in which sufferers have a vehement delusional belief that they are infested with parasites that those affected describe as bugs or insects crawling around under their skin (when in reality they simply do not exist). I ought to add that the characters in Bug also appeared to be suffering from ‘delusory cleptoparasitosis’ (DC) another type of insect psychosis in which the sufferer thinks the place where they live is infested with parasites (rather than from within their body). As a consequence, both ES and DC sufferers are more likely to seek the help of skin specialists (e.g., dermatologists) and insect specialists (e.g., pest control, entomologists) than psychologists.

In essence, ES is a tactile hallucination and is also known as ‘formication’ (which is the word that describes the feeling of insects crawling and/or burrowing underneath the skin’s surface. Formication is also one form of parasthaesia (of which other examples include the ‘pins and needles’ tingling sensations that many people experience regularly). Parasthaesia includes any non-permanent skin sensation including tickling, pricking, tingling, numbness, and/or burning. ES sufferers will focus on any unusual body mark on their skin as ‘evidence’ that they have a parasitic infection. It is not uncommon for obsessive and/or compulsive checking of the body to occur. The prevalence of ES is unknown although Dr. J. Koo and Dr. C. Gambla reported in the journal Dermatologic Clinic that they see around 20 new cases per year in the large US referral clinic.

In some psychological circles, ES has been used synonymously with Wittmaack-Ekbom syndrome that is more associated with ‘restless leg syndrome’ (RLS; something that I myself have suffered from due to a chronic spinal condition that I have). When I get my bouts of RLS, it really does feel as though I have tiny insects moving about inside my right leg. The difference between ES and RLS is that RLS is a real physical condition that has bona fide physical basis whereas the basis for ES is an imaginary delusion. Clinical and medical research has shown that ES is associated with a number of comorbid conditions including affective psychosis, paranoid schizophrenia, organic brain disease, neurosis, and anankastic/paranoid personality disorder. It has also been reported in some people undergoing alcohol withdrawal, cocaine misuse, cerebrovascular disease, senile dementia, and thalamic brain lesions.

There can also be medical complications for ES sufferers. The fictional example of someone pulling their teeth out is not unknown although the gouging or digging out of the perceived parasites is more common. However, a paper by Dr. M. Nel and colleagues in the Journal of the South African Veterinary Association, most ES sufferers are able to function normally in all other aspects of their lives, in spite of their fixed parasitic delusions. They also noted that:

“The typical history often describes numerous attempts at eradicating the infestation. These could include taking medication, applying topical treatments, using pesticides, making use of exterminators, discarding clothing and possessions and even relocatingIn a study of 94 patients (Ohtaki, 1991), most patients complained of itching and/or a tickling sensation. In order to rid themselves of the so-called parasites, patients often scratch, pick and wash frequently or use caustic agents on their skin, almost invariably leading to traumatic skin lesions”.

According to one meta-analytic study of 1,223 ES cases (published by Dr. W. Trabart in the journal Psychopathology), the occurrence of ES as a shared psychotic disorder is an uncommon phenomenon. He reported only about 5-15% of such cases were found. It was also reported that ES was more common amongst females (two-thirds female, one-third male), and is more prevalent in those over the age of 40 years. The symptoms had lasted three to four-and-a-half years. ES can be classified into three sub-types (primary; secondary-functional; and secondary-organic) based on the presenting symptoms:

  • Primary ES refers to individuals that have the delusional parasitic infestation but no other comorbid conditions (i.e., other mental functioning is normal). Those where ES occurs by suggestion from another individual (e.g., the folie a deux case mentioned above) would be included in this ES sub-type. (It’s also worth noting that at least three studies have reported either the folie à deux or folie à trois among family members or loved ones including papers in the British Journal of Psychiatry and Dermatologica). Treatment is usually pharmacotherapy-based and utilizes drugs that are used in the treatment of other delusional-based syndromes (e.g., atypical antipsychotic drugs such as risperidone and olanzapine.
  • Secondary-functional ES refers to individuals that have the delusional parasitic infestation and are associated with another psychiatric condition (e.g., clinical depression, schizophrenia).
  • Secondary-organic ES refers to individuals that have the delusional parasitic infestation that is caused by another medical illness (e.g., cancer, diabetes, tubercolosis, hyperthyroidism, vitamin deficiency, cerebrovascular disease, neurological disorders). Other conditions can also facilitate ES including drug abuse (including stimulant psychosis), various allergies, and the menopause). Treating the primary disorder will often lead to a reduction or elimination of the ES symptoms.

The most recent review of the literature I came across was by Dr. Andrea Boggild and colleagues, and published in a 2010 issue of the International Journal of Infectious Diseases, they concluded that:

“In summary, [delusional parasitosis] is one of the more challenging entities that infectious diseases specialists will be enlisted to help treat. Unfortunately, optimal therapeutic regimens leading to sustained remission are lacking, and assurances on the part of the clinician do little to ameliorate patient suffering”.

Dr Mark Griffiths, Professor of Gambling Studies, International Gaming Research Unit, Nottingham Trent University, Nottingham, UK

Further reading

Berrios GE (1985). Delusional parasitosis and physical disease. Comprehensive Psychiatry 26, 395-403.

Boggild, A.K., Nicks, B.A., Yen, L., Voorhis, W.V., McMullen, R., Buckner, F.S., & Liles, W.C. (2010). Delusional parasitosis: six-year experience with 23 consecutive cases at an academic medical center. International Journal of Infectious Diseases, 14, e317–e321.

Bourgeois, M.L., Duhamel, P. & Verdoux, H. (1992). Delusional parasitosis: Folie à deux and attempted murder of a family doctor. British Journal of Psychiatry, 161, 709-711.

Frances, A. & Munro, A. (1989). Treating a woman who believes she has bugs under her skin. Hospital and Community Psychiatry, 40, 1113–1114.

Freinhar, Jack P (1984). Delusions of parasitosis. Psychosomatics, 25, 47-53.

Gieler, U. & Knoll, M. (1990). Delusional parasitosis as ‘folie à trois’. Dermatologica, 181, 122-125.

Goddard J (1995). Analysis of 11 cases of delusions of parasitosis reported to the Mississippi Department of Health. Southern Medical Journal 88, 837-839.

Gould, W.M. & Gragg, T.M. (1976). Delusions of parasitosis. Archives of Dermatology 112, 1745–1748.

Grace, K.J. (1987). Delusory cleptoparasitosis: Delusions of arthropod infestation in the home. Pan-Pacific Entomologist, 63, 1-4.

Koblenzer, C.S. (1993). The clinical presentation, diagnosis and treatment of delusions of parasitosi: A dermatologic perspective. Bulletin of the Society of Vector Ecologists 18, 6-10.

Koo, J. & Gambla, C (1996). Delusions of parasitosis and other forms of monosymptomatic hypochondriacal psychosis. General discussion and case illustrations. Dermatologic Clinic, 14, 429-438.

Morris, M. (1991). Delusional manifestation. British Journal of Psychiatry, 159, 83-87.

Hinkle, N.C. (2000). Delusory parasitosis. American Entomologist 46, 17-25.

Ohtaki, N. (1991). Ninety four cases with delusions of parasitosis. Japanese Journal of Dermatology, 101, 439-446.

Rasmussen, J.E. & Voorhees, J.J. (1990). Psychosomatic dermatology. Archives of Dermatology, 126, 90-93.

Nel, M., Schoeman, J.P. & Lobetti, R.G. (2001). Delusions of parasitosis in clients presenting pets for veterinary care. Journal of the South African Veterinary Association, 72, 167-169.

Trabert, W. (1995). 100 years of delusional parasitosis. Meta-analysis of 1,223 case reports. Psychopathology, 28, 238-46

Webb, J.P. (1993). Case histories of individuals with delusions of parasitosis in southern California and a proposed protocol for initiating effective medical assistance. Bulletin of the Society of Vector Ecologists 18, 16-24.