Restless legs syndrome is ruining my life

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Restless legs syndrome is ruining my life: an abstract black and white photo of a ten pairs of legs, all burred, visible from the hips down, depicting the constant movement of restless leg syndrome and insomnia.

"Restless legs syndrome is ruining my life." | Photo Credit ©Amirhossein Biparva / Behance Creative Commons

PCOS and restless legs syndrome is ruining my life

It is 3 am. I am lying in bed next to my best friend. She is fast asleep and snoring in my direction. My legs twitching and itching. All I want to do is sleep. It has been 4 and a half nights now since I have slept. 


My friend is blowing her peaceful sleep breath in my direction and letting out little grunts as she dreams, making me want to wrap my hands tightly around her throat or simply bite her face. Extreme, I know. But that’s what PCOS, restless leg syndrome, and insomnia will do to you. PCOS is ruining my life. Restless legs syndrome is ruining my life and my emotions.


I get out of bed and drag my pillows and my cover across the living room floor. I’m heading towards the sofa. I’m looking forward to laying down on it so I can at least rest and not worry about moving if I disturb my friend. 


Most people would see this as generous. I think I’m being a serious gentleman because all I really want to do is poke her forehead and beat her with pillows for daring to be so relaxed and comfy when I can’t sleep.


But here is the fun part. I get to the sofa, and I drop my bedding in disbelief. I’m now standing at the end of the sofa like a tortured goblin staring at my other friend who is sleeping over. I completely forgot. There is nowhere else for me to sleep… isn’ this just great.

An abstract black and white photo of a ten pairs of legs, all burred, visible from the hips down, depicting the constant movement of restless leg syndrom at night causing insomnia.
Credit:©​​Amirhossein Biparva / Behance Creative Commons 

My dog has now woken up and wants to go on a walk. “Can dogs have restless leg syndrome, too,” I ask myself … oh, the joy. But I have nothing else to do, and I’ve removed myself from the bed, and my friend has already turned herself into a human starfish. So, off we go. I’m in my pyjamas, roaming the city streets looking like a madman with my French Bulldog, who just desperately wants to go pee on some trees. I’m tired, my poor restless legs are weak, and my bulldog is dragging me along as if he’s in charge of the situation, not me.


Eventually, we make it home. I go to the bathroom, I close the door, and I just cry. I cry because it has now been 5 nights since I slept. It has now been 120 hours since my legs have stopped jerking and feeling like they are on fire. I’m at the end of my tether. Insomnia has set in and has become my constant companion. Restless legs syndrome is ruining my life.


It’s now 8 am, and I wake up my friend. I’m still in tears, I’m in pain, and I’m emotionally and physically exhausted. My body just can’t take anymore. My restless leg syndrome symptoms include uncomfortable feelings in my legs (itching, pins, and needles…), cramps, tingling, burning, throbbing, uncontrollable jerking, and twitching. And the best part, it can also affect your face, arms, and chest. Oh, and if you didn’t guess already, restless leg syndrome also contributes to my insomnia.

Although PCOS and restless leg syndrome are not necessarily related conditions, PCOS is ruining my life, just as RLS is ruining my life!

My friend hugs me. We try all the common things, a bath with oats to take the itchiness away, a 10mg diazepam to relax my muscles, a horrible glass of magnesium to relax the muscle spasms in my legs, and switching between hot and cold water to relieve the tension. But nothing is working. Nothing.


She looks at me and tells me that we will call a doctor. Which, in all honesty, is the last thing I want to do. It was only a week ago I was sitting in front of my regular doctor telling him about my restless legs syndrome, but all he wanted to focus on was my depression. He simply ignored my pleadings. I told him how restless legs syndrome was ruining my life but it was as if he could not understand what I was saying. 


A few days later, I was sitting in front of a psychiatrist for the first time, telling her about my depression and how my restless legs syndrome and insomnia affected it. But she, too, appeared to not understand me.

Restless legs syndrome is ruining my life: an abstract black and white photo of a ten pairs of legs, all burred, visible from the hips down, depicting the constant movement of RLS at night causing insomnia.
"Restless legs syndrome is ruining my life but my doctors keep ignoring me!"  ​​Credit:©Amirhossein Biparva / Behance Creative Commons  

Now 5 pm comes along, and here I am, tired, overwhelmed, and in pain, sitting in front of my new doctor. Surely I was making a great first impression sitting there looking like a ghoul from Fallout. My friend is sitting beside me. 


She’s explaining the situation to the doctor because at this point, I cannot speak without crying or wanting to beg the doctor to just cut my legs off. I remember her asking the doctor, "does PCOS cause restless leg syndrome?"


My doctor looks at me confusingly and asks, “do you have any issues with your eating habits?” I explain that I don’t and that my weight is due to my polycystic ovary syndrome (PCOS) and that no matter what I do, my weight fluctuates. 


The fact that I automatically have to defend my weight is an issue. My PCOS symptoms are weight fluctuation, non-functional ovaries and reproductive organs, excess body hair, acne, oily skin, and so on. 


Although PCOS and restless leg syndrome are not necessarily related conditions, PCOS is ruining my life, just as RLS is ruining my life!


My new doctor gently and patiently explains that the psychiatrist had put me on antidepressants to help me reduce weight, which in turn made my restless leg syndrome symptoms worse. Not only did the antidepressants make the symptoms worse, but they also reduced my appetite. I had also been prescribed 10mg diazepam to counteract the side effects of the antidepressants.

"I close the door, and I just cry. I cry because it has now been 5 nights since I slept. It has now been 120 hours since my legs have stopped jerking and feeling like they are on fire. I'm at the end of my tether."

This makes me feel sick, and I am not talking about the medications. Not only has my mental health been put at risk due to my legs being the worst they have been for years, but the psychiatrist has put me on antidepressants to try and reduce my weight without telling me or having my consent.


I look at my doctor, and I then look at my friend.


“For five days, five  fucking days, restless legs syndrome has been ruining my life. I have not been able to sleep.  I have not been living a healthy lifestyle. My depression has gotten ten times worse. And all because some judgmental bitch wanted to put me on antidepressants to lower my appetite because she thought I was fat? I even started asking myself: do I have body dysmorphia or am I just fat?”


It’s frustrating. I just want to sleep, hang around with my friends, and not lay in bed because of the horrible pain in my legs. And I don’t want anyone to make decisions about my weight apart from myself because this is my body and no one bloody else’s.

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Article by
Jay Mason

Jay Mason, the author of "Restless legs syndrome is ruining my life," is a transgender man, the proud owner of two lovely dogs, Gotham and Lolo, who hopes one day own a dog sanctuary.

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