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DiscussionRestless Legs - Any suggestions as seen many doctors and medications
Sleep Health | Last Active: 3 days ago | Replies (149)Comment receiving replies
Replies to "Another RLS sufferer here (30 years, walking the floors, genetic component high.) Completely agree that what..."
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@azdogmama
Hi azdogmama. I really identify with over-exercising and over-stretching as triggers! You are the first person to also post this description, but I wonder how many others experience the same phenomenon.
Under those conditions, nothing helps me during the night. Of course, the "over" part often cannot be figured out in advance--so I try to be very careful (not always successfully). When something prevents me from exercising for even a week, re-starting exercises is scary because I don't want to upset the stability I have gained in managing my RLS.
Also--like you--extended time in the car sets me off, but that is immediate and doesn't seem to influence symptoms that night. We just got back from a car trip and both going and coming home, it was two and a half hours and BOOM--symptoms set in.
Also, like you, over the years my RLS symptoms have worsened and become harder to manage.
I gave up chocolate AND sugar at one point (for a couple months), but for me, it made no difference. (I sympathize with you--but at least you know to avoid chocolate.)
What really, really has helped is adding the Nidra bands to my regime of medication and avoiding stress at bedtime. For me, truly successful treatment has been this three-prong approach.
Nidra is made by the Noctrix Company in California. I read about them in the medical literature and then got them 13 months ago. Not only do they work stopping symptoms as they occur (except when I have over-stretched) over time they re-programed my brain. After many months of using the Nidra--this brain-reprograming takes time--twice I have gone over 20 nights (in a row) without RLS symptoms, at all. None! (Can you imagine?)
To get these bands, you need a medical prescription--then insurance should pay (my medicare and supplemental do). The Nidra is an expensive, well-engineered medical devise. Nothing you can buy yourself.
I understand from another poster that her Medicare Advantage plans refused to pay. (Advantage plans are another whole story)
The Noctrix company has a bunch of YouTubes that should explain how they work they better than I can. Anyway, I swear the Nidra has been miraculous for me (along with taking medication and avoiding bedtime stress).
I would never have believed that I could go through entire nights without RLS (let alone a long string of night after night)--but this is true.
Another warning is that an expert RLS is better at prescribing (in a way to get insurance to pay). I think the expert is better at giving history (all the different medications etc that were tried--unsuccessfully or with only partial success--plus the negative effect of sleep deprivation on our lives) than the family practice doctor or internist.
Medicare didn't buy them for me--they rent them. And, insurance also pays for the sticky pads that are changed weekly.
I share this information because it is so wonderful to sleep. I came back from the brink (realizing death would be better than the sleep deprivation I was suffering and the low point when I cried and cried without being able to stop).
My RLS was severe--occurred multiple times each night (even with medication)--and it hurt. Last night, I slept 7 hours and my Fitbit gave me a sleep-score of 89 (90 is excellent--89 is "high good.") I hope by sharing my story this information will help you. Sleep deprivation is torture.
Best of luck to you, azdogmama!