Good Days, Bad Days: What It’s Like Living with Restless Leg Syndrome
If you have been following me for a while, you know I deal with restless leg syndrome, a complex neurological disorder. I like to share my story in an effort to raise awareness about this disease. Today however, I am featuring the story of Aasiyah, another young woman who has had to struggle like I have.
Since 1997, the Restless Leg Syndrome Foundation has received only $2 million total in donations and it was only in 2020 that RLS was added to the list of sleep disorders to be studied by the National Institute of Health. This lack of research means there is still quite a lot we don’t know about this disorder and how to properly treat it, leaving thousands without the care and attention they need.
Hello! Could you introduce yourself?
My name is Aasiyah, I am a 22 year old woman with multiple chronic illnesses and all of have been diagnosed in the last 5 years. One of my chronic illnesses is restless leg syndrome. I haven’t received a formal diagnosis but have been told by many doctors that I do have RLS and that it is something I just have to manage and live with.
How long have you had RLS?
I have dealt with RLS my whole life.
How did it start? What did you notice first?
It started as a child, during long car journeys my legs would get so unbearably painful and I would experience a lot of tingling/pins and needle type sensations. I would also experience a lot of tightness in my muscles that I just couldn’t relieve. This would last for hours after the car journey ended too, my family would try help me massage my legs and even do stretches with me to relieve my discomfort but nothing ever really made a difference. Over time it started to become more general and common, I started to experience these symptoms regardless of what I was doing and at any point in the day.
How does having RLS affect your day to day life, physically or emotionally?
It used to make me quite frustrated as I couldn’t work out what was causing this, as a child, and nobody could really give me an explanation as to what was going on. As I got older I learned to become used to this, I learned to adjust to the pain and discomfort.
There were always days it would leave me in tears or cause me to experience angry breakdowns. I just really struggled processing emotions back then and so this really didn’t help.
To this day I experience all those symptoms and more. I get so angry and upset about my health, it’s been a long journey and hard to accept. My life isn’t what I ever thought it would be and the impact it has had on my mental health has been rough and that is an understatement. It has left me questioning my own existence and the point of living at all when all it is filled with is pain.
My chronic illnesses took control of my life for 2 years and I am still fighting every day to take that control back. RLS combined with my sciatica has been a lot for me recently. It has been affecting how much I can focus, tolerate and function overall.
I can certainly understand those feelings. Have you found anything that brings relief?
My husband, my sister, my family and community have helped me through it all so much. I wouldn’t be coping as well as I am now if not for any of them. It’s why I can push to have good days.
At work I am constantly switching between being sat down on my chair and sitting on my knees on the floor due to all the pain and discomfort in my legs. I walk to work and back, it’s not a particularly long journey as it is only 20 minutes but even that alone can feel like too much on my worse days. I am constantly using a hot water bottle and my massage gun to relieve my symptoms. I also try to stretch regularly and took up yoga after the onset of my fibromyalgia to help with managing all of my symptoms.
The only real things that make any difference is using a hot water bottle and stretching. Granted this isn’t a huge difference that it makes but I will take anything I can get at this point.
Over the last year I have also started using medical marijuana to help manage my mental health and my chronic illnesses. I have found this has helped me relax both mentally and physically, it has provided the most relief for my RLS and allows me to be me despite my chronic pain.
I vape and use oils and prior to this was just relying on medication. I no longer take any ongoing medication except for my IBS and a huge part of that is thanks to medical marijuana. It has provided such a better form of management for my symptoms than any medication has.
I use it daily and it helps me relax after a long day at work both mentally and physically. It allows me to just lay down and spend time with my cats and be in the moment. It lets me enjoy the small things and lets me actually enjoy things again. It brings my walls down which I can’t always do otherwise, due to my health's impact on my life.
That’s great you were able to connect with medical cannabis, I actually use it myself and have also found it to be life changing in managing my RLS. I’m a huge advocate.
If there was one thing you could tell everyone about RLS, what would it be?
I don’t think everyone always understands how much more to RLS there is than just the painful legs and pins and needles sensations. It’s also the overwhelming need to move your legs, the uncontrollable need to shake, jump, run or whatever it takes to just satisfy that feeling. To make it stop.
It’s feeling like your legs are being beaten with a bat. It’s electric shocks up and down your legs. It’s burning, crawling, pulling and itching sensations. It can be all so overwhelming, feeling everything at once. It can feel like you’re being tortured and it can be unbearable. It may seem like a minor condition, but it can have a huge impact on your life. I am taking my time and getting more control.
Anything else you would like to add?
I am very grateful for the life I have and I happy with how far I have come with managing my health. I am so proud of everything I have done and how strong I am now. Truthfully though there isn’t a day that goes by that I don’t wish for my health to be able to go back to how it was. I know that it isn’t possible and that is okay I can find my way back to happiness slowly in my own way.
If readers would like to connect with you, where should they go?
I have an Instagram account @consciouscreationsx where I share my experiences with my chronic illnesses. I also post with my husband and about his chronic illness and our life as a chronic couple. Please feel free to follow me or message me to discuss anything further.
Sounds great, thank you for participating today!
About this blog: Shannyn is a certified health coach and nurse who works with, and advocates for, those with chronic conditions. You can follow her on Instagram for daily RLS tips, or to book a peer support coaching session, click here.
Disclaimer: I am not a medical doctor. I am not licensed to diagnose any physical, mental, or emotional issues. Any information produced is for informational purposes only. Any suggestions or recommendations from me, enacted by you, are at your own risk.
