Restless Leg Syndrome

[chrizizme]

I have Restless Led Syndrome and I just started tracking my sleep patterns with the Flex. It is amazing! Not my sleep pattern, but the fact that this device tracks my "awake" periods and my "sleep" periods to the minute. I can share this with my doctors AND with the other people I know who have this disease. If there are any others out there who would like to start a group, please let me know.

I also track everthing else. I am very active and would love a challenge or 2, or 3......

CW

[DulcimerDan]

Having had experience with Restless Leg Syndrome and a doctor throwing pharmaceuticals at the problem, I can tell you this from experience.  Some doctors prescribe benzodiazephines like Klonopin as an off-label use for this drug.  For me this was nothing less than a nightmare.  If anyone throws Klonopin at you, just read everything Stevie Nicks of Fleetwood Mac says about her physician prescribed Klonopin addiction.  

[chrizizme]

Oh, I know all about that.
Here is my thing:
I have had RLS since I was 7 years old. I decided 2 years ago to get to "gound zero".
No more prescription drugs, supplements or anything, not that I was on much, just Premarin, and some stuff for acid reflux,...
BUT major stuff for Parkinson's Disease that was supposed to help with RLS. I went through them all.
I am proud to say that I am managing my own health now. No more doctors.
I do monitor my sleep with the Fitbit and it has opened the eyes of many people around me who never quite understood the sleep disturbances I was experiencing. I also log my food because I believe that there is an autoimmune issue here. Not quite sure yet, but I eliminated grains and dairy and I am doing great.
I just thought I could share what I have been doing with anyone else out there that might be wondering???????

Thank you for your reply.

[chrizizme]

BTW, Stevie Nick is my all time favorite. I see her, or Fleetwood, when they are in a 100 mile radius of my home. Next stop.....The Forum, November 29th! Bought my ticket the minute agter midnight that they went on sale!

[DulcimerDan]

Thanks for sharing. I'm a 30 year RN and I have some major issues with how our health is being mismanaged.


Dan

[chrizizme]

No kidding. Me too. I'm doing this on my own.
I thought there might be a "social media" type outlet to find others that are willing to talk and do stuff to beat these symptoms.

Let's se if anyone else is interested.

[DistanceRider]

I'd love to see a site that recommended books and links to articles that help with managing our own health.  My sleep pattern is terrible and that's WITH a sleeping aid. 

[wallelf]

I also have RLS. What I find helps, and it very well could be a placebo effect, is 8 ounces of tonic water (with quinine) around 5pm. To help with the taste, I put in a shot of Mio lemonaide flavoring and just drink it down. It's not too bad and it seems to be alievating some of the worst of it. At least, I'm not up pacing a couple of times during the night. I had read about this somewhere and thought it would be worth a shot. Some nights are better than others, but overall, it seems to be working for me.

[1outlaw]

I too have restless leg syndrome-- it is worse on days when I have extreme levels of activity (over 25,000 steps) or too much inactivity (sitting time). Doctor was going to order a sleep test based on a machine I wore one night but after I shared my Fitbit records he backed off (in part because I carry a CDL-though I rarely drive a truck). He wanted to try a Cepap outfit but after seeing the Fibit records and reviewing the machine test plus interview decided it was likely only a combination of RLS, sinus pain, and hip pain (need hip surgery someday). He prescibed Pramipexole 0.5 mg-- 1 tab 2 hrs before bedtime- more if I feel it is needed. Not sure it does anything for me. Anyone familiar with this drug?

Phil

[Fit_4_Life]

I just had a sleep study and have plms or periodic limb movement syndrome, which I think is much like restless leg syndrome.
I weened myself off of klonapin almost two years ago so don't want that again. Not sure I trust medication. I see parkinson meds or benzos are the "go to" meds for this...
I am all about natural ideas such as moderate exercise, warm baths, and massage. I saw something re using e-stim too. Has anyone tried that? I am open to trying flavored tonic water too as someone here suggests If that works.

[MissBee]

I have found meditation really helps improve my sleep patterns. Just tried an experiment - I meditated in the afternoon using my FitBit in sleep mode. I ended up with 32 minutes of sleep and an improvement in my % of over 10%....and it really revived me.

[Rich_Laue]

@chrizizmeyou are more than welcome to start a group on this subject in our Activities Group section

[Lildynarider]

So I've had RLS since I was a child. I can remember getting shin cramps from moving my feet so much in bed. Everyone then told me it was growing pains, but the aching and moving continued well past puberty. My mother has it as well and is on medication for it. I however am stubborn and refuse to take the prescriptions. I instead take an asprin or rub on aspercreme. Those always help, but my concern is to not take too much. In one week taking an asprin a night is a lot. I do find that mine occurs in a pattern with barometric pressure changes and female related stuff. My fitbit shows me just how much sleep I lose to RLS and helps my friends and fam understand why sometimes I'm very ditzy throughout a day.

[Jaschultz]

Requip is a non-benzo that really helps!

[Jaschultz]

Also, told and plmd are related to low ferritin levels. Ferritin is how iron is stored in the body. You can test normal for iron levels and not be considered anemic. Ferritin can still be extremely low without the diagnosis of anemia. Many women experience increased restlessness around their period which coincides with a dip in ferritin. I would consider adding iron supplements if your labs show low normal ferritin because you are menstruating...

[Jaschultz]

I also see a huge increase in restlessness when I eat wheat... Probably inflammation or s GI bleed from gluten sensitivity causing a dip in my ferritin levels. If I avoid wheat my Fitbit shows more actual sleep.

[geckospot]

If I drink too much water in the evening I tend to get RLS.  Sometimes I do take the klonopin, but only if I can sleep in in the morning.  Even a low dose makes me really groggy in the AM.

I also found that increasing my magnesium helped with the restless legs.  A blood test came back with low Mg, even with supplements.  If you start taking Mg go slow!  It can cause serious intestinal upset if you have too much at once.

Congrats on getting back to ground zero!

[vcastro.324]

I would!  I know I have trouble sleeping but didn't think anything of it until I changed my sleep mode to sensitive... Is this what your sleep patter looks like?

[Rich_Laue]

Please remember that in sensitive it will show every little movement.

On.The web interface, clicking the pencil will allow you to change the sleep mode, I found this interesting to compare.

[vcastro.324]

So are you saying that the movement I'm having is normal for sensitivity mode?