The Loneliness of RLS
Last updated: October 2023
Restless legs syndrome (RLS) is an illness that has the capability of making you one of the loneliest persons on earth. More often than not, you don’t know how to explain it to others, and even when you do, they either don’t understand it, think you’re making it up, or think it’s all in your head.
The constant struggle to manage RLS symptoms
Trying to figure out how to manage your symptoms can sometimes become very obsessive. You’re constantly trying one remedy or another. You’re hopping from one website to another in an effort to find someone who you can relate to. You may find yourself constantly changing doctors, advocating for yourself every single time because the professionals who are supposed to help you do not take you seriously. You’re constantly tired and depressed, and there’s a limit to outside activities your legs can withstand.
Mental health and the reality of RLS
Friends fall off after a while. To some family members, it’s "always something" with you. It's hard to find people who are going through the same thing as you, and even when you do, you may lose them to depression and suicide; sometimes they, like you, are so overwhelmed and just need to be left alone.
It is your reality, but sometimes you question your sanity. 'Is it all in my head?' you find yourself asking from time to time. Are these people who think it’s a phantom pain right? Is my body making up things that aren’t there? Am I okay mentally?
Sleep problems and their impact on relationships
You’re always tired. Who wouldn't be? You barely get enough sleep as it is, but you still need to wake up in the morning like everyone else and function. You still need to go to work and be excellent. You still need to ensure your children are taken care of and always make sure you’re showing up for them. Ballet recitals, practice, cheerleading, teachers’ conferences — whenever and wherever they need you, you still need to be a decent parent and show up.
Let’s not forget you also need to be a good friend as well. Never mind that no one is showing up where it matters for you. You’re anxious all the time and find yourself snapping at people over very little mistakes.
Just wanting your legs to stop
Sometimes you find solace in food; it’s not because you’re hungry, but what else is there to do at 2 AM when you can’t sleep?
You might even find yourself on the verge of picking up vices that aren’t even your cup of tea to begin with; and, in some cases, some people lose that battle, falling into one addiction or another because they just need their legs to stop.
A mixture of emotions
I know exactly how you feel because I feel it too. I know the mix of emotions you go through on a daily basis; exhaustion, anger, frustration, sudden bursts of energy, exhaustion again, anxiety, depression, exhaustion again. A never-ending cycle.
Yes, I know it all too well.
Do you find that what you eat or drink impacts your RLS symptoms?