Heart Issues Complicating RLS

Six years ago, I ended up having my right atrium damaged due to the constant starting and stopping of strong painkillers and opioids.

There I was, at 28 years old, with a permanently damaged heart. This means I can go into tachycardia (a heart rate of over 100 beats per minute) really easily.¹

Just getting out of bed and standing up is enough to send me into tachycardia. My former general practitioner (GP) never did anything about it. He said all I needed to do was exercise.

Diagnosed with RLS and sleep apnea

Near the end of November 2019, I started having issues where my breathing wasn’t always autonomic. I first noticed it at night, but it started happening in the daytime. When my former GP sent me to a sleep clinic to see if that was the cause, I was officially diagnosed with restless legs syndrome (RLS) and obstructive sleep apnea.

This was not the cause of my breathing not always being autonomic, and the sleep clinic wondered why they were even doing a sleep study when my breathing issues were happening in the daytime, not just at night.

New doctors and tests for my heart

When my former GP circled back to the cause being my emotions, I fired him and started seeing a new doctor. After being sent to a couple of specialists, a cardiopulmonary specialist believed it is my heart. He ordered a bunch of tests on my heart, and one of the tests may have made things worse.

A complete lung function test was ordered, and the inhaler I was given as part of the test was not something that my heart liked. I ended up in the ER department for 3 nightmare hours. Doctors even considered shocking my heart back into normal rhythm, but thankfully it didn’t come to that.

Disruption to my sleep routine

Since then, things haven’t been the same for me. I have way more frequent tachycardia throughout the day. I’m fatigued more than usual, and I need to sleep by the time 9 PM rolls around. This has thrown a wrench in my sleep routine and schedule — well, actually, more than that.

I have to eat food earlier in the day to try to have 4 hours between dinner and sleep. Trying to have an hour of wind-down time before going to sleep has also been a challenge; I am way too tired more often than not. This makes it harder to fall back asleep when I wake up to go to the bathroom every couple of hours.

Being less active impacts my RLS

As I haven’t been able to be as active, this has also made my RLS act up more than just at night. I started taking my RLS medicine at dinner time so that by the time I go to sleep, the medicine has kicked in and is helping to ease my RLS issues.

I may also be experiencing a new RLS symptom – feeling like bugs are crawling on me now and then. But I also know that’s something people with fibromyalgia can suffer from.

Hopefully, this is just temporary. I am really hoping that once the cardiopulmonary specialist knows what is going on, we can start to treat it and things can go back to a more normal routine. Well, as normal as things get for me. Fingers crossed.