Restless Legs and Comorbidities
Last updated: June 2023
Childhood of unruly motion
Restless legs syndrome (RLS) has always been a part of my life. As a child in the 1950s, I was unable to keep still. It drove my mother crazy, and I was told I had ants in my pants as well as growing pains due to pain in my legs. My sister and I slept together for some years until, in desperation, my parents had to separate us. I was kicking her during the night and she was upset, but I just couldn't lie still. I couldn't go to the cinema, church, or anywhere where I had to be still. Attending school was a nightmare, and I failed many exams or got low grades.
I was a complete mess physically and mentally
Roll forward 30 years. RLS became much worse in my 40s. Going to work was very hard. I developed a condition known as myalgic encephalomyelitis (ME), now called chronic fatigue syndrome (CFS). Well, I was exhausted but couldn't get the rest my body needed. I eventually returned to work after 9 months but I had to change my job within the organisation. I couldn't manage to sit at my desk for 7 hours a day. I was always finding a reason to get up and walkabout, leading the management to think I was wasting time. I eventually retired early. I was a complete mess physically and mentally, I and was admitted to a psychiatric unit for assessment. They gave me Zopiclone to knock me out at night, but it didn't calm my RLS. They didn't know what to do with me, so they sent me home.
I'm now 73, have Crohn's disease, severe osteoarthritis, and one functioning kidney. Try to explain to a doctor that a combination of painful joints and RLS is a bad combination. Trying to constantly move and jig about is not helpful with RLS. Crohn's is a difficult illness to cope with and exhausts you, too. I was fed with a nasal tube for 8 months due to malnutrition and poor absorption of the goodness from food. Out of these, by far the worst to manage is RLS. With the other conditions, I have some level of control over them, but it is almost impossible to control RLS. Over time, I've had dopamine agonists and the resulting augmentation.
Dismissed and misunderstood
A former general practitioner took me off pramipexole abruptly and gave me gabapentin. Within days, my legs had swollen so badly and became infected. I spent two weeks in the hospital. The GP in question told me to pull myself together and be grateful that I didn't have a ''real illness like a heart attack." They said that RLS is only mildly uncomfortable and that I should go for a walk when symptoms bother me. At 2 in the morning? I'm a very laid-back person, but this upset me, and I complained to the practice manager. He is no longer my GP.
My current GP is very kind, but really has no knowledge of RLS. I offered him a copy of the Mayo Clinic Algorithm, but he said he had to refuse it, as he can only follow the guidelines given by the NHS and NICE. I try not to get angry anymore, as it doesn't help me in the end. I'm resigned to the knowledge that, in the UK, RLS is not understood by most health professionals.
Finding solace in a shared journey
These days I survive by using a low dose of opioids prescribed for my arthritis, 2 pramipexole at night, iron supplements at night with vitamin C, and magnesium two hours before. I'm at the end of a very long tether now. I have never met another person in real life with this condition. Unless people are hiding it. I know there are many other RLS sufferers and many with comorbidities. It's a lonely condition, but at least we can share it here in this community.
What do you wish for the most when it comes to RLS awareness?