It’s a bit ironic that I didn’t get a post written for Sleep Awareness Day yesterday because I took a nap and couldn’t wake up!
Even more ironic is that it was a combination of the impact of allergies – and two nights without my restless legs medication.
The first time I told a doctor about my sleeping issues I was in my 20s. I was talking to my gynecologist, because if you’re a woman they’re usually the type of folks you tell everything.
My mom only slept a few hours a night, and that was an ongoing issue. I suspect anxiety was the reason for her sleeplessness. She refused to take medication for it and so often was making pound cakes at 3 a.m.
I knew I had no intention of missing sleep. I was a deep sleeper for most of my childhood, though my family will tell you my technique of getting to sleep, beating my head against my pillow, was a bit weird. We don’t believe I ever gave myself a concussion.
But back to the gyno. He told me anxiety was the reason for 95% of sleeplessness. Maybe because no other possible solutions were offered? I never convinced him I was in that five percent, which did annoy me, but he was the first doctor to give me prescription sleeping pills. S
till, he frustrated me because I didn’t really feel heard.
The pills worked until they didn’t. At times I would try new ones, but they were no better than my old standards. (I’m not endorsing any medication here – we’re all different.)
During a particularly bad bout of the pills not working and me not sleeping, I saw one of my provider’s partners when she was on vacation. He diagnosed me immediately after I described what I felt when I couldn’t sleep at night.
I think I said “It’s like my insides want to be outside.”
He said “You have restless legs syndrome.”
I argued with him. People with restless legs syndrome are those folks kicking and jerking when they sleep. I was the opposite. I was remarkably still as I slept. The bed was almost still made in the morning.
He grinned at me and said that not all restless legs is the same. In my case, my muscles wanted to fire at night and couldn’t, for whatever reason. That was what caused thise weird feelings throughout my body.
He finally had me convinced and almost 20 years after the problem started, I had a diagnosis.
He put me on a medication that proved to be too harsh for my body. He proved to be in sympathetic about me going off it and trying something else, so I went off it against his advice. (Wiser me says always have a good conversation with your doctor or pharmacist before taking yourself off a medication.) I also never went to see him again.
With no other alternatives given, I went back to using sleeping pills and trying every home remedy for restless legs I could find. It was 10 years later when my Nurse Practitioner prescribed an older drug that proved to be my salvation. It still is.
There are many sleep disorders they know about today, and many possible solutions though as with many things most providers don’t study these at length in school. It’s why you need to advocate for yourself and not stop until you find the solution that is right for you.
There also are sleep specialists, who can help diagnose your particular condition. If there is not one in your town, it is worth traveling to one for an appointment. Don’t stop until you have answers.
Even among those of us with restless legs there is no one reason we have it or one treatment that even works for most. If you have been diagnosed or think you may have restless legs syndrome, let me refer you to a great community for information. https://restlesslegssyndrome.sleep-disorders.net There also is a Facebook page. https://www.facebook.com/RestlessLegsSyndromeHU/
I forgot to refill my prescription this week and then forgot to pick it up, so I went two nights without my medication. Both nights I took a sleeping pill. It worked the first night, but not the second. I barely slept.
So I was exhausted on Sleep Awareness Day and took a very long nap and forgot I intended to write about it. Yeah, it makes me laugh, too. But I also picked up the prescription that makes normal sleep possible, so it should be a very good month of quality sleep. I wish the same for you.
RLS is a hellscape at times: I’m sorry you have it to deal with. I take a calcium-magnesium supplement that mostly helps. It’s both prophylactic, and treatment when I have a night of flaring (when I remember lol). I like Jamieson 💝
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Unfortunately it doesn’t seem to help me, though I continue to take magnesium hoping it does something I don’t see! Mine is mostly controlled, thankfully. I hope it stays that way!
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I’m glad: fingers crossed 🤞
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