Elaine’s odyssey to understand and treat restless leg syndrome (RLS) has spanned decades. Symptoms began in her 30s, pulling and jerking sensations mostly in her legs that made it difficult to relax. She had no idea how to describe what was happening, deciding it was impossible to tell a doctor when she couldn’t explain it to herself. Over time these symptoms would increase in severity, turning into something that could not be ignored. Eventually she read an article about RLS in the paper and everything clicked into place. Now she had a name to put to the symptoms, but figuring out a treatment was a whole different journey.
In this episode of the Major Pain podcast, Elaine talks us through her 30+ year journey with RLS and the many medications she has tried to control her disease. The list includes a dopamine agonist, kratom (an herbal extract from Southeast Asia with potential health risks), tramadol (a synthetic opiate) and cannabis. Each medication or herbal remedy brought some relief, but with varying levels of side effects. Elaine consistently found herself moving on from each substance when the negative effects began to outweigh the relief from RLS, and her symptoms have continued to increase in severity over time.
Thankfully, Elaine recently discovered a new treatment that has not only been highly effective, but free from detrimental side effects so far. She traveled to California to see a RLS specialist who prescribed a micro-dose of an opiate called buprenorphine. The dosage is so low that Elaine does not feel the effect of the drug, other than the targeted alleviation of her RLS symptoms. She is finally able to sleep through the night, realizing how sleep deprived she has been for years. Her decades of experience and recommendations are distilled into this podcast episode, in the hopes of helping other RLS sufferers find relief.
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This episode of Major Pain is supported by a creator grant from the Stimpunks Foundation. This is a nonprofit organization providing mutual aid and human-centered learning for neurodivergent and disabled people. Check them out online at https://stimpunks.org/