Patient Perspective on Brain Health Series

Forgotten Happiness – Living with Restless Legs Syndrome

I have become used to this, am lying in bed kicking my legs, admittedly sometimes getting very angry or even desperate, but “living with it”.

This brain story is my story about RLS – Restless legs Syndrome – and how it has determined my life – and still does. I share this story in the hope that it will lead to more awareness of RLS as a serious condition.

RLS is a neurological disease which is characterized by an irresistant and uncontrollable urge to move/kick the legs. This occurs mainly in periods of rest, in the evenings and nights. Severe RLS occcurs in other parts of the body as well. RLS patients have to move, in whatever way. Sleep becomes very fragmented – if at all.
This story actually began with my mother, who suffered from severe RLS. Yes, RLS is a genetic condition. My mother, in her lifetime, suffered several periods of what was then called a nervous breakdown. Long periods of hardly any sleep. She was invariably told she needed to take things a bit easier, she was too nervous, nothing wrong with her, perhaps some stretching exercises….

My RLS symptoms, looking back, have been there since I was very young, in a mild form initially. I would have problems sleeping and always be rubbing my feet, but nobody made the connection. As a matter of fact, my mother hardly spoke about it to us, all we knew was that she would walk about at night kicking her legs, and did not sleep well. RLS became a real problem for me when I was pregnant, the last few months were absolute horror, I hardly slept. The delivery went well, RLS disappeared and I slept as much as my newborn baby the first few weeks.

However, the symptoms did not go away entirely. And then the penny dropped. The “jumpy legs” were a genetic condition. My RLS steadily became worse, and was totally unpredictable. In the years that followed, I saw many general practitioners and, later, neurologists. There was no medication for RLS, nor did doctors even know about it, let alone that it was a neurological condition. I tried painkillers, herbal supplements, acupuncture, nothing helped, and just like my mother I was told to take it easy, the message was that I should simply ignore it, it was all “between my ears”.

And then in the 1980s, a serendipity finding. A Turkish army doctor discovered that levodopa, the anti-Parkinson drug, worked for RLS. This brought RLS research into a new phase. The first study groups were started, and all over the world patients came out of the solitude of their bedrooms and started organizing themselves. Impactful drug research took place over a period of 10 years, diagnostic criteria were established, and in 2003 an international severity rating scale was published. After that studies into the genetics of RLS were started and continue until today.

Industry, especially the companies that produced the dopaminergics, had begun to work and in the early 2000’s two dopamine agonists were approved for RLS, worldwide. Doctors and patients alike said Eureka! Problem Solved! I, too, felt that my life would change.

Meanwhile I had joined the RLS patient advocacy community, initially in The Netherlands only (year 2000), and later in Europe, when RLS patient groups from several countries came together (2010). This was a very positive development. How important this was became clear not much later. In their enthusiasm, or for simple business reasons (RLS has a very high prevalence, so all numbers were rather high), industry had advised to increase dosages of the dopamine agonists as needed, and doctors started prescribing these accordingly. But a new phenomenon was the result: Augmentation. With high doses of the dopaminergics, the RLS symptoms spread all over the body, become more severe, and occur 24/7. A situation almost impossible to deal with for patients. Just imagine you are unable to cook because it is too dangerous, or to hold your baby: the unpredictable extreme jerks in legs and arms make things like that impossible. Bed partners are kept awake by the jerking and kicking.

Importantly, the withdrawal reactions of the dopaminergics drug are so severe, that abrupt stopping of these drugs results in a severe “cold turkey” reaction. But augmented patients were advised to do this and had to undergo sometimes weeks of extreme RLS and no sleep. In my time as a patient advocate I have seen three suicides because of this in The Netherlands only.

So RLS patients had been set back at least another decade and there was no adequate treatment for the condition. Still is not. Dopmine agonists do work in low dosage, which for severe RLS is not enough, antiepileptics are prescribed, off label, but the side effects are too many. Opioids work, especially methadone, but the discussions on these drugs, the addiction potential, makes doctors hesitant to prescibe them. Whereas RLS patients do not need high dosages at all!

Knowing all this, having become a well informed patient meanwhile, I still use a dopmine agonist in low dosage and with a GP willing to work with me my RLS is bearable. I am lucky to live in the The Netherlands where this drug is available and to have a good and social health insurance system. I still have very fragmented sleep, it takes me hours to fall asleep, each and every day and even when I am really tired. I have become used to this, am lying in bed kicking my legs, admittedly sometimes getting very angry or even desperate, but “living with it”.

And that explains the title of this blog. On the very rare occasions that I wake up in the morning and feel rested and have slept well, this is a feeling totally forgotten when every other new day in the year is so different. One truly forgets what that feels like. So great.

The battle for more research into RLS goes on. With the renewed interest in brain health, and the recognition of the high burden of RLS as an under-researched disease, I cautiously dare to hope that the generation after me will see the breakthough in RLS research which the many millions worldwide are waiting for.