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RLS or PLMB?
For years I have had daytime sleepiness everyday. I will go to bed around 10:30 pm and wake up on my own around 6:00 am. When I wake up I feel tired. My knees, hips and lower back hurt like I've been running all night. I finally convinced my sleep doctor, whom I see for apnea, of this and scheduled me a sleep study. It confirmed hypersomnia. Dr didn't call me but prescribed a medicine that was $600.00 a month, which my insurance denied. He tried two others which caused issues with urine flow. He told me that was my choices. I looked at the study results and it said I have 60 leg movements and hour but was of no concern. My primary doctor referred me to a sleep neurologist who said he didn't think I had RLS because my legs don't tingle or feel creepy crawly and because it happens at night. I had read about PBLM and asked if it could be that. He said he that he thought my hypersomnia was caused by my hip, back, and knee pain. He suggested that my primary physican prescribe me Ritalin , which he did but it didn't help. If I try to read or watch TV during the day I will surely fall asleep and feel sleep drunk when I wake up. I had been prescribed Gabepentin before and it didn't help and caused serious side effects. I recorded myself sleeping with an IPad and showed my primary doctor my leg movements and he was more concerned with my head and facial movements and had me tested for seizures which was negative. Also for years I have to wear a mouth guard to sleep because I would bite my tongue in my sleep. I have also taken Pramipexole which also cause leg stiffness and issues with urine flow. I pretty much get, got nothing for you.
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@shakota Hi, again, shakota. Better health care isn't always convenient, unfortunately.
It does sound like you have worked as much as possible with local resources. Going elsewhere doesn't guarantee your situation will be easily treatable--or (honestly) treatable, at all. There is no way of predicting (a fact of life for all of us). But, it is the next logical step and it is very much worth trying.
Personally, I went somewhere--where I knew, by reputation, that the doctors were carefully screened and top-notch, because there are situations that need the "better doctor."
Local egos don't always refer to places like Mayo, so Mayo lets patients self-refer. You call, get an appointment scheduled and then get your medical records sent (which is easy to do and doesn't cost anything).
Of course, insurance is a consideration. Insurance rules our lives in regard to health care. Mayo, I understand, won't accept any Medicare Advantage plans. So, there is that reality.
But, if you don't have that kind of barrier to going out-of-town, Rochester isn't that far driving distance from central Illinois. Rates at the Hampton Inn (the one of the south end of town) aren't bad. You ask for the Mayo Clinic rate.
Everyone's finances are a personal matter, so I can't tell you what is affordable for you, but from your description of symptoms, it sounds to me like some smart doctor figuring out a care plan for you is the next step you could take. Otherwise, you are stuck in a holding pattern.
I've been to Rochester, although not for RLS, and it was a good experience. It's the kind of place where you expect the doctors to be "up on the latest" (in whatever field) and it's the kind of place that gets the most difficult cases (and it sounds like you fit into that category).
A lot of the practice there is "figure it out" and send the patient back to the primary doctor for ongoing treatment.
They aren't always perfect at getting everything "done" in one single visit (like sometimes scheduling tests), but they aren't looking for lifetime customers, where you only get your care from them. They don't purposely drag things out or expect you to return for ongoing care. Since you have had a sleep study, they would be able to use that information and not start from scratch. But, you might need to go there more than once.
There are other "centers of excellence" in terms of health care and St Louis is closer, just personally, I haven't heard anything about RLS treatment in St Louis--and I have solidly good feelings about Mayo.
I think "Mayo" from my personal experience, but it isn't the only option.
Maybe, with some googling research, you could find someone in St Louis as a next step, which required less distant travel. Better yet, you could call the RLS Foundation to see if they recommend a doctor closer to where you live (which logically could be St Louis).
Then, you could call that doctor, ask about insurance, ask if you can self-refer, and make an appointment (also send your medical records). If necessary, your doctor could refer you (which isn't a big deal for a doctor to do).
It sounds like you also need to organize someone to drive you, since falling asleep is such a problem for you.
Think over these suggestions.
I appreciate that "thinking" and making decisions can be a struggle when one is chronically tired--as is making a plan to "do something." But, you mustered the energy to reach out to us on this forum, so you are capable of advocating better care for yourself. And, you have all of the readers of this forum behind you, rooting for you.
Wishing you the best!
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1 Reaction@vikkitennis, that's such a good point about looking into those leg bands. I'm fairly new here, but I've dealt with RLS for years and I've personally found that some kind of gentle compression or pressure on my legs can sometimes ease the restless feeling a bit. It doesn't make it disappear, but it can take the edge off, which is a good non-drug option when you're trying to avoid more medications.
I completely agree with you that @shakota needs to find a doctor who really listens and specializes in RLS or PLMD. It's so frustrating when you feel dismissed and told there's nothing else to do. Finding someone who understands this condition makes such a difference.
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