37 Years with Restless Leg Syndrome
Today I am sharing a story written by Karen Lowe, a wonderful woman who has dealt with RLS for over 3 decades.
As I compose my story, I am standing at the ironing board. I have been awake since 3am, unable to sleep or sit still.
My name is Karen, I’m 57 years old, and I am a mother and grandmother. I live with my partner of 5 years and I am semi-retired, having worked as an early years teacher for over 30 years.
My RLS history started approximately 37 years ago. Initially, it was mild and tolerable, compared to the intensity and frequency I suffer today. The sensation strengthened during pregnancy. My RLS has developed over the years and has caused inconvenience, discomfort, irritability, pain, embarrassment, lack of sleep, mental health issues and relationship problems.
I have attended many doctor appointments over the years and I felt dismissed because nobody understood my description of the illness. Friends and relatives had never heard of such a sensation. However, one day, 15 years ago, I attended a doctor appointment for another issue, unrelated, but mentioned my discomfort with my legs. The doctor was interested and said that he had recently had a patient experiencing the same. He said he recognized RLS as an illness and had a colleague who worked in the Royal Brompton Hospital in London who was a neurologist consultant and had recommended medication for RLS.
For the first time, I had been taken seriously and my doctor sent me to St. George’s Hospital, Tooting, in London to see a specialist. An extensive examination of my reflexes and nerve points were assessed. As a result of this meeting and assessment, my GP prescribed Ropinirole. It was also mentioned that my iron levels were extremely low and I should take iron supplements. Over the following months, the medication worked and gave me some relief. I had to take the meds at exactly the same time every day, if I didn’t the sensations would start. I became heavily reliant on the Ropinirole.
The effect of the medication soon dwindled and the RLS returned with a vengeance. (Note: This is called augmentation.) The negative impact on my daily life was horrendous. It encroached into my work place. I could no longer read a story to my children, in class, sitting down. I had to stand up. I could not sit through a staff meeting. I had to stand up at the back of the room. It became a problem during my social life. I could not sit down and watch a movie at the cinema. I could not use public transport without having to stand up. I had to stand through concerts and theatre performances. Driving became an issue. I have had to pull over on several occasions to get out and stretch my legs. Travelling as a passenger is uncomfortable during long journeys. I have been known to stand up in a restaurant and eat my meal!
I have tried many different things to relieve the pain and discomfort. I have tried Quinnine, exercise, yoga, swimming, walking, stretching, pain killers, extreme temperatures, cold and hot water, showers, baths, vitamin and mineral supplements. I have spent a fortune on creams and lotions and potions but nothing has alleviated the sensation. I returned to the doctor and he increased my Ropinirole dose. I was told that this was the highest dose I was allowed. It appeared to relieve the symptoms for a short period of time but, yet again, the RLS would intensify. My desperation to relieve the discomfort has caused me to self- injure to take the feeling away from my legs! During my long sleepless nights, I have tried knitting, crocheting, painting, cleaning, ironing, meditation, relaxation apps, a footbath, no sugar and no caffeine diets and no alcohol.
How much longer do I have to tolerate RLS? It can be a lonely place to be. The nights are long. The pain and sensation is unbearable. My mental health is poor. My physical being is poor. My self-esteem, confidence and self-care is poor. Even with the love and support of my family and partner, I cannot continue to tolerate this awful, debilitating disease. The future is not looking bright for me.
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.
