I’m just a girl - Diagnosing part 7 (Restless Leg Syndrome)

It’s the worst name for a medical condition. Restless sounds as though the person suffering can do something about it. That it’s a simplistic and easy to fix disorder. Of course, like any understudied physical ailment, the complexities of RLS are ¹numerous and there is no fix.

My restless leg symptoms began a few months after my initial neuropathy pains. At first, the RLS was intermittent and tolerable. It was nothing in the grand chaos of my developing medical drama. I assumed it was a part of the constant nerve pain and that it would subside once my mystery condition went away. As the autonomic neuropathy progressed and I finally met with doctors who diagnosed the disease, my legs’ “restlessness” grew.

RLS feels like a deep aggressive itch that you can not scratch. My version of it tends to live further up my legs, almost into my pelvis. As soon as you get tired and your body starts sending signals and hormones through your system that you need to fall asleep, the itch, the pressure, the internal crawling, the “restlessness” starts getting louder. Moving does help to slightly alleviate the symptoms. Getting up and walking around reduces that tension. But, as soon as you sit or lay down, that feeling and its building annoyance starts up again.

When I first tried explaining the feelings of RLS to my doctor, he didn’t understand my complaint. I described it poorly and almost felt shame that I was bringing yet another symptom to the already full table. Around that time, I went to a clinic for a sleep study. I was an insomniac before getting sick. Adding acute and chronic physical symptoms into insomnia meant that I was often not sleeping for two or three days at a time.

The sleep study went well enough. It’s a weird experience to be wired up from head to toe and lay in a bed while people are literally watching you sleep. In the morning, I washed the thick conduit goo from my head and went on my way. Eagerly awaiting the results and the conversation I would have with the clinician, I was hopeful that my internal itch would show in the workup and I’d be sent home with cures for that and my insomnia. I was much more naïve and hopeful back then.

A few weeks later, I met with the sleep doctor. My results were simple. I woke up hundreds of times a night, but didn’t have any drop in oxygenation. No notes about my mysterious “restlessness”. No magic cures for my insomnia. As I tried to explain to this doctor how my legs were keeping me up at night but that it felt different from my neuropathy pain, I had the random thought that I should share more about what eases the “restlessness” instead of stumbling over my symptom descriptions. I mentioned that orgasming was one of the only ways I found relief. (Yes. I’m a very open person about sexuality and didn’t find this to be an overshare.) To my surprise, the doctor immediately said that what I was experiencing was Restless Leg Syndrome. She gave me some information on the condition and some lifestyle recommendations to ease the symptoms. One of those tricks was indeed orgasming. It isn’t a perfect or substantial fix, but most of the time it temporarily works. Something about the flooding of serotonin and dopamine. Science has not studied the condition well enough to understand much of the why or how around the disease. Much less figuring out why something as common as an orgasm seems to quiet those signals.

There is no ignoring RLS. You don’t get to meditate or pray the feeling away. Forget falling asleep or fully relaxing. It doesn’t matter how tired you are. Actually, being more tired makes it worse! It causes such a distraction and frustration that you feel as though it will never end. Just like hives or tinnitus, this deep “restlessness” can’t be squelched. So what do we do? How do those of us with RLS rest or sleep?

We can’t just masturbate to orgasm every time we need to relax. Well, maybe some of us can. There are medications that claim to help. I’ve taken most of them at some point. Unfortunately, those specifically marketed prescriptions do not work for me. As it turns out, RLS does share some overlap with autonomic neuropathy. Someone with dying nerves, like yours truly, feels a variety of types of nerve misfirings. Fortunately, the single medication I have found that works best for my neuropathy also works on my RLS. In combination with walking around as much as possible just before getting into bed - or laying on my back and doing biking motions with my legs in the air if I can’t stand - I take my nightly medication dosage based on the way my legs feel before I actually go to bed. That way, I’m not left with an insane pressure/itch/restless urgency that accompanies a RLS attack just as my mind finally quiets. If all that fails, I will often use a helping hand to give me a moment of relief that just might be long enough to let me fall into the bliss of sleep. Sometimes nothing works, I will do all the tricks and I’m left crying as I wander my halls or try to distract myself until morning.

Now that I have a grasp on what RLS is, I am shocked at the amount of people I describe it to that have similar symptoms. They thought something was wrong with them. Or they were ashamed. Or they assumed everyone dealt with “restless” legs before falling asleep. I’ve had family members and partners who have been quietly living with nightly symptoms for years. I’m quick to offer the non-medication lifestyle adjustments that can offer a bit of relief, but I always recommend consulting a doctor. The condition is already understudied and under-diagnosed. More people need to come forward with their symptoms in order for Restless Leg Syndrome to be taken seriously. And hopefully, given a more fitting name.

1. Newton, Douglas, Julie Jones, and Kate Ezra. The Pacific Islands, Africa, and the Americas: The Metropolitan Museum of Art. New York: The Metropolitan Museum of Art, 1987, p. 62.