Q:My wife has suffered for many years from “restless legs”. She has also suffered for some 10 years from almost permanent pain in the upper part of her back slightly to the left of her spine (viewed from the back). So far, doctors, clinics, hospitals

A:Restless legs syndrome afflicts between 1-10 per cent of people (usually middle aged or older people) in varying degrees. It is characterized by itching, tiredness and uneasiness deep in the muscles of the leg, usually in the lower part and, in a fifth of cases, the arms. Sufferers may experience twitching and sometimes pain, burning (a feeling akin to having insects crawling over you) or aching.

One of the biggest difficulties is often convincing your doctor that you have the condition. No simple laboratory test exists to confirm the syndrome, and symptoms disappear during the daytime, when you’re likely to visit the doctor (although your wife may suffer from involuntary movements in the day termed “dyskinesias while awake”, or DWA). A diagnosis is usually made by interviewing the patient about symptoms.

However, the best way to tell if you have the problem is to work out when it occurs; in true RLS, the symptoms usually occur an hour after you settle down to rest or sleep, with the peak incidence in the evening, between 6pm and 4am. Not surprisingly, those suffering from RLS also have trouble sleeping.

Medicine believes the condition is linked to nervous system disorders and that it is hereditary, frequently appearing in first degree relatives. It can also be a complication of alcoholism, iron deficiency or anemia, diabetes and even pregnancy, and can be linked to neuropathy or the kidney condition uremia (although in these instances, it is not considered true RLS).

Because medicine considers RLS a nervous system disorder, it treats it as a relative to Parkinson’s disease. The primary drug of choice is dopaminergic agents, such as levodopa. Although it does appear to stop the feelings and involuntary movements, this relief comes with a heavy price the plethora of possible side effects noted by those with Parkinsonism: nausea or vomiting, postural hypotension, (feeling faint on standing), psychotic symptoms, delusions, hallucinations, confusion, motor difficulties and involuntary movements the very problems you are attempting to solve. But with RLS, L-dopa also tends to cause symptoms to occur late at night, interrupting sleep or causing “rebound” symptoms which develop earlier in the day and are more severe than those you might have had before you started drug treatment.

Other possibilities are dopamine agonists, such as bromocriptine and pergolide, which have fewer rebound effects but don’t have a long track record of working very well.

Medicine has also turned to opioids, such as codeine, propoxyphene (Darvon), oxycodone (Percodan), or pentazocine and even methadone, in an attempt to drug the victim into relaxing his limbs. Although some studies of Percodan and Darvon show that it may work (Sleep, 1993; 16: 327-32; and 717-23), other studies show that only some patients with a full range of symptoms respond (Neuropeptides, 1988; 11: 181-4). Furthermore, the biggest problem is the potential for addiction that exists with all opiates.

This problem also exists with the third type of medicine, the benzodiazepines, or tranquillizers, which work by forcing the patient to sleep.

In one study, conducted at the Sleep Disorders Center at Johns Hopkins University School of Medicine, in Baltimore, Maryland, 32 per cent found relief with carbidopa levadopa, 28 per cent with pergolide and 5 to 6 per cent with opiods (hydrocodone or propoxyphene). In this particular study none found relief with bromocriptine. However, with the carbidopa levodopa combination, more than three quarters suffered from rebound symptoms.

This armament of drugs is even more ridiculous in light of the evidence that RLS could be nothing more than a nutritional deficiency. Several studies have showed that iron deficiency is associated with RLS; in one study, a quarter of patients were found to have low blood levels of iron; conversely, one quarter of patients with low iron stores had RLS (Neurology, 1960; 10: 868-73). In at least one study of patients with RLS who were iron deficient, iron supplements cured the problem (Acta Med Scand, 1953; 145: 453).

Another possibility is folic acid deficiency (M I Boutez, and E H Reynolds, Eds, Folic Acid in Neurology, Psychiatry and Internal Medicine, Raven Press, 1979; Can Med Association J, 1976; 15: 217-22). Vitamin E has also been shown to alleviate symptoms. In one study, of nine patients receiving vitamin E, seven had symptoms eliminated completely and the other two had more than half of symptoms controlled (J Appl Nutr, 1973; 25: 8-15).

WDDTY panellist Melvyn Werbach, nutritional doctor and professor of the University of California, Los Angeles, recommends that patients avoid caffeine, cola, tea and cocoa, which has been shown to help symptoms (J Clin Psychiatry, September 1978), and consume a sugar free, high protein diet, since symptoms often are caused by hypoglycemia. In one study of over 350 patients with RLS, all of them also had typical symptoms of recurrent hypoglycemia. As soon as they were started on a sugar free, high protein diet with frequent snacks and one night feed, symptoms resolved or were strikingly alleviated in the vast majority (J Fla Med Assoc, 1973; 60: 29-31).

Your wife may wish to pursue the nutritional route (with a qualified practitioner) to see if it sorts out both problems, which may well be related.

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Written by What Doctors Don't Tell You

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