PLMS/RLS - Uneducated docs!!!

Since my RLS has been so bad lately (Ivory soap not working anymore) I've been looking at lot at RLS sites. I talked to my psych a couple weeks ago and wanted to try Requip and get off benzos since they can be habit forming. The psych referred me to my physician. So last Friday I talked to my doc about Requip and specifically asked him about my sleep study and how the PLMS with arousal (index 5.1) and lack of delta sleep were not addressed by the sleep doc.

He told me I needed to be on CPAP longer and then when I said told him I wanted to switch to Requip since the RLS is getting worse and bothering me more in the afternoon he replied that I DON'T have RLS then since that only affects people at night!!!!!

Damn it! Now I have to educate my PCP?!?!? Any documentation regarding RLS talks about the primary symptom being the feeling in your legs compelling you to move them when you are at rest or sitting still for any period of time. Many talk about the airplane symptoms, riding for long periods in a car, having to leave a movie theater because you can't sit still! I guess all these things happen while people were sleeping, huh???

The next criteria for RLS is movement alleviating the symptoms but having them come back shortly after movement is stopped. My mother has RLS but refuses to admit it. Therefore I'm primary RLS.

So I'm back to square one. No treatment for the PLMD/RLS (all benzos do is have a sedative effect) therefore no delta sleep because my legs kick all night

Today I did find out doing my research (which THE DOCTOR should be doing!!!) that antidepressants make RLS worse - especially SSRI's (guess what *I'm* on...). And I feel I'm in a Catch-22. I'm still so sleepy during the day (even with Provigil which I have a feeling is contributing to the worsening of the RLS) that I drink tons of coffee all day to stay awake (which makes BOTH RLS and apnea worse).

I'm so sick and tired of having to be my own advocate. But then I've had enough adverse experiences with doctors who should know better but practically killed me that I no longer take a doctor's word as gospel. I question, research, question some more, etc.

Yep, I'm the one who had to look up appendicitis on the Internet before calling the doctor at 3:00 in the morning because I wanted to be SURE I knew what was going on! Lucky for me it didn't burst! There I was not even able to sit up straight from the pain surfing the net!!!

Yep, I'm just one crazy lady. Thanks for letting me rant.

PM sentl

delta

it's so funny that you are saying this right now, because just today i noticed my rls symptoms appearing earlier than ever before, around 5:00...i'm guessing (hoping?) the doc means it only happens in the evening, because that tends to be the norm (which doesn't mean anything, let's face it, what's normal?), but if he means it happens during sleep then he does have his disorders mixed up...

i've been on requip, albeit reluctantly, for a couple of months...i don't know for sure if it has addressed my plmd as i mainly sleep alone, and when my hubby is home on weekends he sleeps so deeply it's like a short spell of death, as they like to say in dear old ireland...but i do know that it has helped my rls, mainly because when i forget to take the early dose, the jimmy legs start as soon as i dare to relax in the evening...i'm on a very low dose though, .25 mgs at 6:00 pm and .25 mgs 9:00 p.m....plus i started prescription iron as it was extreeeeeeeeeemely low and that contributes to plmd (as does my fibromyalgia...it's one big vicious circle)

anway!!! (i sure can ramble, huh?) i haven't experienced any of the possible negative side effects so far...then again i still feel like hell even after 5 months of cpap therapy, so maybe i wouldn't notice anyway!
(well, i guess i'd notice the compulsive gambling and hypersexuality!)

what the heck was my point? um, lost track...i think i just wanted to say, i hear ya, and been there with the doctor not knowing his ass from a hole in the ground

i really feel for you, as you seem to be on a lot of different meds which are conspiring to make you feel worse instead of better and that really SUCKS!

hang in there
sharon1965

leading cause of death in the US is still doctors!

when my doctor doesn't know something, he doesn't try to blow smoke up my butt, he simply says "I don't know" he either suggests things I can research on my own or he says he will have his nurse get back with me.

guess that is why I still see the same doctor some 20+yrs later.

Note: I would seek out another doctors opinion, what harm could be had by your doctor giving you a trial script of Requip?

If you are also taking some other medications you would be doing yourself a favor in researching the adverse side effects that may be present with those such as cholesterol lower drugs. Some of them line the intestines which prevent absorption of food cholesterol and at the same time prevent absorption of other vital nutrients like iron. For men not such a big deal because we don't need that iron, but for women it can be.

I wonder how many women have RLS vs men.

Thanks Sharon, It's nice to know others are in the same boat

Snoredog, actually RLS has about a 50/50 prevalence amongst the sexes. (Or at least Primary RLS does). Secondary RLS (mostly caused by iron deficiencies) is more prevalent among women due to us having more incidences of iron lowering conditions (don't think it's possible for men to be pregnant or have dysmenorrhea [sp?]) It also becomes more prevalent with age. A lot of research has been done and some would seem to suggest that even if your serum iron levels are within normal ranges your brain levels might be low or the receptors not available and that would be the reason dopamine agonists help with RLS. (At least that's what I've gotten over the last 2 days research).

I did like this doc until recently. In fact, I left one insurance specifically so I could go back to him. After this answer as Fagin said in Oliver! "I think I better think it out again!"

<sigh> I hate doctor shopping

Linda

Call it snake oil, if you wish. (jump right in snoredog )

But I have been experimenting with the Hylands "Restful Legs" homeopathic treatment recently for my MILD and SPORADIC RLS.

Sleep doc said my RLS showed up in some sleep studies and not in others, and of course had no explanation.

I did NOT like Gabapentin. Daytime drowsiness and dizziness and some other minor issues seemed counter productive.

So I figured for $5 a bottle its a pretty cheap experiment to try to Restful Legs. After 2 months it seems to be consistently working for ME.

The nature of homeopathic is it won't work for everyone since each remedy is somewhat dependent on the individual too and not just generic to "RLS".

Coffee lessens the effectiveness of homeopathic (I get plenty of caffeine from tea) and you should wait 15 minutes or so after eating/drinking/ brushing teeth before melting a tablet or two under your tongue.

I just take a single tablet per night, and it works the whole night for me. Bottle recommends 2 every 4 hours. I sleep like a ROCK with the homeopathic combined with a dental device.
Is it effective or a placebo? For $5 a bottle, and no side effects, I don't care....it works for me.

YMMV

snork1 wrote:Call it snake oil, if you wish. (jump right in snoredog )

But I have been experimenting with the Hylands "Restful Legs" homeopathic treatment recently for my MILD and SPORADIC RLS.

Sleep doc said my RLS showed up in some sleep studies and not in others, and of course had no explanation.

I did NOT like Gabapentin. Daytime drowsiness and dizziness and some other minor issues seemed counter productive.

So I figured for $5 a bottle its a pretty cheap experiment to try to Restful Legs. After 2 months it seems to be consistently working for ME.

The nature of homeopathic is it won't work for everyone since each remedy is somewhat dependent on the individual too and not just generic to "RLS".

Coffee lessens the effectiveness of homeopathic (I get plenty of caffeine from tea) and you should wait 15 minutes or so after eating/drinking/ brushing teeth before melting a tablet or two under your tongue.

I just take a single tablet per night, and it works the whole night for me. Bottle recommends 2 every 4 hours. I sleep like a ROCK with the homeopathic combined with a dental device.
Is it effective or a placebo? For $5 a bottle, and no side effects, I don't care....it works for me.

YMMV

you should have tried Hyland's Calms FORTE, after someone mentioned it here, I remembered I had purchased a bottle somewhere, so I dug around my cubbard and found a 250 count bottle of it never opened. Tried it for a week and actually saw fewer apnea events on the Silverlining reports. Not scientific, but I have no other explanation for it. Several nights during that week I had zero apnea scored and many fewer Hypopnea and FL's activity seen. I tried their quinine treatment for leg cramps back when I had a stroke, it didn't help that any, later found those to be caused by diovanHCT, changed meds, those cramps went away.

I feel so angry when I hear about docs that are so ignorant about RLS and PLMD. It is truly such an awful, awful problem and needs to be addressed appropriately, And Sedatives can make your OSA worse, so really are not a good idea!!!

The RLS Foundation has medical bulletins and on line info which you could print out and take to the docs who need education. Unfortunately this may not go over well, but is worth a try.

Perhaps you could find a Movement Disorders center somewhere within range? They usually exist at large teaching hospitals. They generally have one or more docs who specialize in RLS/PLMD.

I have gone through many, many, meds, and right now what is working best for me is Mirapex and Ultram. Even with that it can start early in the afternoon, even morning.

But it is much better after my lengthy antibiotic treatment for other issues (and transfusions too....probably iron related).

Hope you can all find some relief.

Dealing with OSA is difficult enough and adding RLS/PLMD into the mix is truly a nightmare.

Wonder how many folks with OSA also have RLS/PLMD?

Either OSA with RLS/PLMD is highly prevalent or it's contagious (just kidding), but it just seems likely that whatever OSA does to the blood affects the brain function that controls movement. No science on that, just trying to think thru why it seems so common.

My RLS/PLMD has been familiar to my circle of close friends for many years. There is no real commonality among us except our paths have intertwined since young adults.

Five years ago one friend was diagnosed with OSA and was noncompliant and quit. As that path goes, she deteriorated to the point of having another sleep study last year, and we can guess what it showed. Her OSA was caused by a surgical error when a nerve was cut during thyroid surgery, paralyzing a vocal cord. She is on Klonopin for the legs.

Another close friend had a sleep study two years ago. Showed some problems but nothing the doctor felt needed treatment. Her daytime sleepiness continued to increase. Had another sleep study recently - Mild OSA & Severe PLMD. Guess her chronic leg discomfort when lying down wasn't her back after all.

Another friend is a flight attendant for corporate jets, and has blamed her sleepiness on crossing times zones and an erratic schedule. She's been told she snores and seems to have trouble when she's sleeping. She's gone from working part time teaching spin classes at the gym to struggling to make herself do more than required in daily living. Maybe those "panic attacks" she's had for 4 years where she wakes up with her heart racing aren't related to her son's death after all. She says sometimes she's just so restless in the bed. Do I see the handwriting on the wall? A diagnosis with her would be 4 out of 5.

The fifth is an insomniac who sleeps when she collapses and feels like crap all the time. But she's so ill and heavily medicated due to a liver translant that has given her 12 more years, that the docs haven't even addressed any sleep issues. Can't help but wonder if her BP would be better if her sleep improved.

How prevalent is the OSA and RLS/PLMD dual diagnosis? Who knows? It complicates diagnostics since once can mask the other in studies. Makes treatment more difficult, but thankfully, not impossible.

Kathy

I have tried every RLS med available. Nothing works but some type of opiate. A mild pain reliever works the best. After suffering for 20 years I can finally relax in the evenings.

kteague wrote:

How prevalent is the OSA and RLS/PLMD dual diagnosis? Who knows? It complicates diagnostics since once can mask the other in studies. Makes treatment more difficult, but thankfully, not impossible.

Kathy

Good question Kathy!

I have UARS and my RLS was considered secondary because of a low ferritin level. However, after 2 years of taking slo-fe and my iron only rising from 12 to 22 (doc said it needs to be 60!), and ending up with a torn up stomach from all the iron (1-2 pills a day), my doc now thinks it must be primary. I used to cry myself to sleep until I was a teenager and guess was just so very tired (growing that is) that it seemed to go away until adulthood. No one ever took my sleep issues (RLS or severe fatigue) seriously until this sleep doc. He is wonderful and has been listening and working with me for almost 3 years now. (My RLS did not show it's ugly head during the sleep study - but the fact that my hubby came to my follow up and told the doc that I had been shaking the bed with my legs and almost kicking him out for 18 years - instant confirmation of RLS to my doc - he said "A six hour sleep test versus 18 years? No brainer!" And my symptoms are well under control.

My cpap therapy for my UARS is working wonderfully and I am on a low dose Mirapex for my RLS.

Sleepyred