Mark's RLS Story: Thoughts and Considerations (Part 3)

This story is the third installment of a member-submitted 3-part series. Part 1 of Mark's story can be found here. Part 2 can be found here.

And we come to the final part of my RLS story.

After dropping all of the drugs entirely, I went through a couple of months until late October without great troubles except my mind and body recovering, some problems sleeping, or my body trying to rebalance itself.

Until one day — it was after dinner — I was laying on the couch watching television, and I started feeling this discomfort, this sensation of uneasiness. I cannot describe it otherwise. I instinctively moved my legs to release the sensation, which went away but immediately returned. So I "shook it away" again from my legs, only to do the same thing over and over until I decided to stand up and have a drink.

A sensation of discomfort and uneasiness

I have to say that, getting through all of the side effects of the psychiatric drugs, I wasn't totally "new" to something disturbing my sleep or something else that made me feel unwell that day. I still wasn't feeling well, so obviously I got nervous about it, but I didn't expect it to happen again.

But then, the following evening, that sensation — even stronger — of discomfort and uneasiness in my legs, which I could not remove, was so strong as to make me feel very uncomfortable. It was also uncomfortable emotionally, like a sort of unconscious pain, which I did not feel but that still made me feel unwell.

But the absurd thing is that, at first, I didn't even understand. I thought maybe it was something psychosomatic, that maybe the thought I wasn't comfortable made me feel uneasy and unwell, and the movement was simply a release of emotional and nervous tension. I didn't think it depended on my brain.

The sensation spread to my whole body

After the subsequent night, when I woke up in the middle of the night with such a strong feeling of discomfort throughout my whole body (that also involved my arms and torso), it seemed to unravel from my brain in waves of unease and physical discomfort.

I can't describe it otherwise.

I tried to fall asleep again, but all I could do was clench my teeth with my arms crossed on my chest, making grimaces and snorting air out of my nose due to all this discomfort — like when you have a physical pain and you try to hold back. At the end, I found myself raising my arms to the ceiling while laying on my bed at 4 AM, and then having to get up and go to my bathroom just to have a break from it.

Discovering Willis-Ekbom disease, or RLS

The next day, I found myself in the same situation, only it was the afternoon. I had to understand that it wasn't me, but something else, so I decided to do a quick search on the Web. Just typing "restlessness in legs" made me discover Willis-Ekbom disease, also known as restless legs syndrome.

I thought, "Cool. Not only am I not crazy and this thing exists, but it has been long documented, and there is probably a cure."

I thought this only to find myself with the disappointment that, no — like practically all the rest of the neurological and psychiatric diseases, there is no cure, only therapies to control the symptoms.

I thought, "It's impossible for this thing to haunt me for life. I didn't have it until now, and sooner or later it will have to disappear."

And here I am, writing this a year and a half later, with the same problems — only, they seem to "evolve" or change over time.

Dopamine agonists temporarily helped

I went to see a specialist in early 2022, a neurologist in another city, and all he could come up with as a solution was to first prescribe me benzodiazepines, which accomplished nothing and messed with my sleep, like it wasn't already compromised.

After that, he finally gave me the dopamine agonists, which temporarily solved the problem during last summer but gave me some side effects (what a surprise). Amongst them was the worst insomnia I have ever had. I didn't feel tired, I wasn't sleepy at all, and I didn't sleep more than 4 hours a night intermittently — sometimes not even 1-2 hours.

My nervous system, I think, was "stimulated" by pramipexole when I was in a relaxation phase, causing a sort of spasm or slight contraction of my whole body. It made me make a slight "jump" with sometimes a little vocal emission, with the consequence that, on rare occasions, when I was finally falling asleep, I was reawakened by this symptom.

Changing course

After spending the whole summer in sleep deprivation, I went back to see my neurologist.

I did not particularly like how I was treated; there was no empathy from the doctor, and sometimes he did not even bother to look at me while writing down my medical records.

I decided to take a break from therapies to see how things would go, and I planned to eventually see another doctor.

I have to say, until last November, I had no particular trouble and even managed to sleep better. But then, things changed when, before Christmas, my symptoms worsened.

Trying natural remedies and supplements

In the last few months, I have tried some remedies.

First, I tried mucuna pruriens (the velvet bean) powder for its natural levodopa content, dissolved in warm water on an empty stomach.¹

I have to say that at the beginning I saw a few improvements, and I thought that maybe I could go on with it. But apart from the fact that supplements are generally expensive and this one in particular is (I have already spent more than $100 just for this since January), it did not completely solve the problem. After just a few times, the effects have started to become discontinuous.

So, for a couple of weeks, I have tried a combination of phenylalanine along with L-tyrosine. I hoped that with consuming them as supplements, along with natural levodopa, things would improve, but it was not really so. My symptoms kind of stayed the same, plus it worsened my insomnia (they seem to have a sort of stimulating effect, so they must be taken in the morning). The same goes for magnesium and calcium.

Another specialist appointment around the corner

Recently, I have been taking folic acid and a B-12 vitamin, because I know that RLS occurs in some women during pregnancy and they particularly need these 2 nutrients. The hope is the same for the previous supplements.

Needless to say, the first night I was warmly welcomed with a 5 AM falling asleep time. Let's see how things go in the upcoming days.

My last hope is Vitamin E, because according to one study I read, a small group was treated with it and 7 out of 10 had a total remission of the distress in just the first 2 days. (Seems too good to be true.)

After that, my friends, the time for a new specialist appointment is just around the corner. My hands are tied up.

Remember to discuss any supplements you are taking or thinking of taking with your doctor.