Restless Legs and the Endless Search for Rest
Last updated: August 2021
Over the past decade, I have experienced varying levels of restless leg syndrome (RLS). When it’s been at its most severe, during my pregnancies, I’ve found myself thinking that the disorder is not appropriately named. After all, restless implies feeling unsettled or eager to go out, but severe restless legs are an experience far beyond mere discomfort.
I find the pain from RLS to be uniquely excruciating because of its endless and persistent nature. During my first pregnancy, it made my third-trimester attempts to sleep feel tortuous. Throughout my second pregnancy, it was a nearly all-day and all-night sensation starting early – at just 6 weeks of pregnancy.
In addition, having restless legs compounds my other health issues. Typically, when I have severe joint or muscle pain I’ll lie down in bed until the pain improves, but with RLS I can’t lie down to rest – I am forced to keep moving - and therefore my other pain issues inevitably become worse.
What is restless leg syndrome?
Restless legs syndrome is a neurological sleep and movement disorder that may be related to the dysfunction of dopamine pathways in the brain.1 Low levels of iron in the brain may also be associated with RLS.1
This condition causes uncomfortable or painful sensations, most commonly in the lower legs, which can lead to overpowering urges to move the legs to try to relieve the pain. People often end up pacing, bouncing their legs, or tossing around in bed. In my experience, moving my legs does not always fully resolve pain.
The sensations of RLS are often difficult to describe. Depending on the severity, they might be referred to as uncomfortable, tinging, burning, unpleasant, pulling, itching, or throbbing. Personally, it’s almost like something undefinable is attacking the inside of my legs as if it's trying to escape.
The connection between lupus and RLS
Out of 836 people who responded to the 2nd Lupus In America survey, 69 percent reported symptoms of sleep disorders, and 28 percent reported being diagnosed with a sleep disorder such as restless legs, insomnia, or narcolepsy.
Furthermore, 7 out of 10 survey respondents reported using rest as an alternative treatment for their lupus. Of course, RLS can make it very difficult to rest and could cause issues for people with lupus who are prioritizing rest.
There is not a known cause for RLS, but many conditions or factors that may be related to RLS overlap with some that are associated with lupus.1 Some of these include:
- Kidney failure/renal disease
- Sleep disorders or sleep deprivation
- Certain medications (anti-nausea drugs, antidepressants, and antihistamines)
Other things that may aggravate RLS include pregnancy, diabetes, alcohol use, nicotine, caffeine, and anti-psychotic drugs. Restless legs have a genetic component, it has been found to occur within families, and specific gene variants have been found with RLS.1
Restless legs syndrome treatments
For known conditions, such as anemia or kidney failure, treating the underlying cause can resolve RLS. Additionally, there are several lifestyle changes and medications that can help relieve RLS symptoms. These include:
- Avoiding triggers such as alcohol and tobacco
- Exercising regularly
- Massaging the affected areas
- Applying heat
- Using pressure or vibration
For more severe RLS, medications including anti-seizure drugs (like gabapentin), dopaminergic agents, opioids, or benzodiazepines may be used.
Normally, my RLS is pretty mild. I generally treat it by exercising regularly, avoiding sitting still for long periods of time (particularly during long road trips), and avoiding all antihistamines (Benadryl is one of the worst triggers for my RLS).
However, during my pregnancies, I have had extremely severe RLS that eluded pretty much every treatment I tried. I did find some things that provided mild relief, including:
- Magnesium supplements
- Magnesium cream (I used 8 SHEEP ORGANICS magnesium body lotion, though I must issue a warning that it ruined my bed sheets due to its thick residue)
- Additional iron supplementation
- Boots that compress and massage my feet and lower legs
Additionally, I remained on gabapentin throughout my second pregnancy. I occasionally used opioids or benzodiazepines for RLS flare-ups (both types of medications are generally considered safe to use infrequently and in low doses during pregnancy; I always followed the guidance of my doctors for these meds). Yet, it was never enough for me to be completely symptom-free. There is certainly a need for more understanding, research, and treatment options for restless legs.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?