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Restless Legs Syndrom (rls)

Smitten

By Smitten
in Related Issues & Disorders

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Smitten Rookie
Smitten
Posted

Anyone else out there have RLS? If so, what do you do to try to relieve this? I can be up hours in the night with the constant erge to move my legs! Any suggestions would be appreciated!

Thanks!

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  • Replies 88
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Guhlia Rising Star
Guhlia
Posted

I've never been diagnosed with RLS, but I think I have it. I have an insatiable urge to move the lower part of my body (it sometimes gets so bad that I have to arch my back too). I've found that when it's keeping me up sometimes a heating pad turned on high (I know, you should never use a heating pad on high) will relieve the worst of it. It hurts, but I can fall asleep through the pain a lot easier than I can while I have to constantly be moving around. I've also found that sleeping pills make this WAY worse! If I take a sleeping pill I end up tossing and turning most of the night and it makes my legs and back get horribly cramped. I've also found that on days that I remember to take my multi-vitamin that it's no where near as bad that night. I don't know what in the vitamin is helping, but it seems like something is.

Lately, I haven't had problems at all with this. Before I go to sleep I've been propping up a pillow under my neck (while laying on my back). I think it must cut off some of my circulation because it makes me super sleepy. Then, I just roll over and fall asleep. I haven't slept like this since I was a little girl. Maybe it will work for you too.

Good luck!

Lagomom Newbie
Lagomom
Posted
Anyone else out there have RLS? If so, what do you do to try to relieve this? I can be up hours in the night with the constant erge to move my legs! Any suggestions would be appreciated!

Thanks!

I have RLS. I KNOW what you are experiencing. RLS can be a symptom of diabetes. Have a GTT done to rule out diabetes. Not enough exercise is another reason given. I swim and still suffer RLS. I have Sinemet (a Parkinson med) for the RLS. It's not a cure-all. But, after taking it for a month or so, the symptoms calm down a tad. Neurontin and Doxepin and Percocet are also used for RLS. I find that the Sinemet works best when combined with 2 percocet. When it's really bad, I have my kids beat on my calves with their hands (percuss). For some reason, it makes RLS easier to bear. I also have a 2 foot, 1 inch diameter dowel that I use to hit my leg muscles with when the kids can't percuss anymore. It sounds bizarre, but it helps.

I am convinced my RLS is a result of malabsorbtion. Researchers also suspect that RLS may be caused by insufficient iron in the brain. Interesting, as I am a carrier for Hemachromatosis.

Libby.

celiac disease/Lupus/OA/C282y het

and a bunch of other stuff.

Smitten Rookie
Smitten
Posted
  • Author

Thanks for your replies! The first time I encountered RLS is when I was pregnant with my first. I often wondered if it could be related to vitatmin deficiency. I pound on my legs, get up and walk or just go to the living room and turn the TV on in the middle of the night. Sometimes ibuprofen helps. I do Taebo 3 times a week so I believe I'm getting enough excersise. I broke my ankle last Labor Day weekend and now I get it really bad in that leg.

Someone told me once they heard putting a bar of soap under your bed sheet would help. I don't believe that one!

Shelly

luvs2eat Collaborator
luvs2eat
Posted

I'm interested because last night I could NOT keep my legs still when I went to bed.

Sometimes in the evening, I'll find that I can't keep my lower legs still and have to move and stretch them almost constantly... and of course it almost ALWAYS happens on long plane flights... but this was the first time it happened when I went to bed!

There's no pain involved... just the feeling that I HAVE TO move my lower legs!!

Edited to add: Our "newspaper" doctor always has folks writing in for the soap under the sheet trick. They SWEAR by it. I thought it was for leg cramps. I even tried it once for those cramps that send you flying out of bed to flex your calf muscle, but I don't think it did anything. That'd sure be an easy fix if it does work!!

tarnalberry Community Regular
tarnalberry
Posted

I've had this phenomenon a few times, and can't imagine having it constantly. Even a week or two is enough to drive me crazy. I've heard (don't remember where) that it's related to vitamin/mineral deficiency - calcium? magnesium? zinc? One or two of the vitamins/minerals used in nerve signal transportation. You may find supplementation to help, though you'll need to do more research on what the proper route is.

penguin Community Regular
penguin
Posted

I get the problem in my knees from time to time. It doesn't hurt, but for some reason tylenol helps me sleep with it. Don't know why.

I also get wicked charley horses at night, but for me, that's hereditary. Everyone in my family has the problem, most of us have low blood pressure and my mom has has a low sodium problem. Orange juice and bananas help, I think it's a potassium deficiency that causes it.

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debmidge Rising Star
debmidge
Posted

My hubby has had RLS for years and the anti depressants intensify them, so he can't take anti depressants due to this.

He takes something occasionnally for the RLS at night (Requipp).

jenvan Collaborator
jenvan
Posted
Thanks for your replies! The first time I encountered RLS is when I was pregnant with my first. I often wondered if it could be related to vitatmin deficiency. I pound on my legs, get up and walk or just go to the living room and turn the TV on in the middle of the night. Sometimes ibuprofen helps. I do Taebo 3 times a week so I believe I'm getting enough excersise. I broke my ankle last Labor Day weekend and now I get it really bad in that leg.

Someone told me once they heard putting a bar of soap under your bed sheet would help. I don't believe that one!

Shelly

Shelly-

RLS is sometimes caused by anemia. I had it (hated it!) for several years...and went through some nights where it was awful. After I had my anemia corrected (by infusion), it totally went away. Anemia is very common in Celiacs. Have you ever been checked or ever thought you might have it?

jerseyangel Proficient
jerseyangel
Posted

I had RLS for years--also while anemic. It was so annoying! After being on the gluten-free diet for 6 months, my hemiglobin came up to 14.5-- no more RLS!

jenvan Collaborator
jenvan
Posted
I had RLS for years--also while anemic. It was so annoying! After being on the gluten-free diet for 6 months, my hemiglobin came up to 14.5-- no more RLS!

Yeah, that was one of the anemic signs for me (along with ice-chewing). I had RLS horribly on my honeymoon--the plane ride to and from Hawaii was awful. I couldn't sit still--I was freaking out in my head "Get me off this plane!!" I have seen some commercials recently for RLS meds. Made me wonder how many folks have a specific issue causing the syndrome (like anemia) but will end up on the meds, not identifying the problem...

Smitten Rookie
Smitten
Posted
  • Author

Jen, it is SO funny you mention ice chewing! When I was pregnant with my second I couln't get enough of chewing ice, I craved it! Both pregnancies my RLS intensified. I did read that some people only have RLS when they are pregnant. Thanks for the advise.......I'm going to get my hemoglobin checked. :o)

I have not gotten my final dx of celiac yet therefore, I have not started gluten free yet. I'm planning on starting Monday. I will be very curious to see if a lot of my symtoms will get better/disappear!

jerseyangel Proficient
jerseyangel
Posted

My mom, who is always anemic, has always chewed ice! I got the RLS--go figure :D

jenvan Collaborator
jenvan
Posted
Jen, it is SO funny you mention ice chewing! When I was pregnant with my second I couln't get enough of chewing ice, I craved it! Both pregnancies my RLS intensified. I did read that some people only have RLS when they are pregnant. Thanks for the advise.......I'm going to get my hemoglobin checked. :o)

I have not gotten my final dx of celiac yet therefore, I have not started gluten free yet. I'm planning on starting Monday. I will be very curious to see if a lot of my symtoms will get better/disappear!

Ask for a full iron panel--not just hemoglobin. Ferritin and iron... One of my numbers was the lowest my hematologist had ever seen...but my hemoglobin was never as bad. Ice chewing is a sign of anemia for many people--and a crazy one too! (On days where I was home our ice maker could barely keep up with me! My poor teeth!) Let us know what you find!

danikali Enthusiast
danikali
Posted

I used to get that ALL THE TIME before I went gluten free. Then, it went away but I noticed if I had something else that I was 'allergic' or intolerant to, I would get it, just not as bad. It's funny because I would get it sooooooooooooooooo BAD after excersizing or walking a lot (I live in NYC and in the summer, we walk EVERYWHERE because the subways are soooo extra hot and muggy and sticky)......but then the only way to relieve it was take some alieve and stretch it a lot. Stretching really helped it. But I would also check out if you have any other food allergies to see if that may be the cause of it. I haven't had it in a while because I noticed it also came along when I ate nuts or eggs, but like I said, it wasn't nearly as bad as when I was eating gluten.

KayJay Enthusiast
KayJay
Posted

I have that too. Lately it has been real bad but I read it could be caused by low iron. So I started taking my iron pills from after I had the baby and it helps a lot.

CarlaB Enthusiast
CarlaB
Posted

I have gotten RLS ever since I can remember. When I was pregnant, it was the worst, and I was also anemic with each pregnancy. I've always considered it a sign to take iron for while, which would make it go away. Since being gluten-free, I have not had this at all, nor an anemia problem.

When I was pregnant I always had low blood pressure ... if I got up and walked around at night, the RLS would go away and I could go back to sleep.

Funny you mention ice chewing, I used to always chew ice! Now I drink water with no ice! I never made the connection.

Carla

jenvan Collaborator
jenvan
Posted
I have gotten RLS ever since I can remember. When I was pregnant, it was the worst, and I was also anemic with each pregnancy. I've always considered it a sign to take iron for while, which would make it go away. Since being gluten-free, I have not had this at all, nor an anemia problem.

When I was pregnant I always had low blood pressure ... if I got up and walked around at night, the RLS would go away and I could go back to sleep.

Funny you mention ice chewing, I used to always chew ice! Now I drink water with no ice! I never made the connection.

Carla

Carla-

Hi! That was probably the source of your problem too... Glad you don't "chew" now either! :P

CarlaB Enthusiast
CarlaB
Posted

It was a lot more fun to chew ice back when all the fast food restaurants had crushed ice anyway! Now I'm afraid of cracking a tooth!

Lynxear Rookie
Lynxear
Posted

Try going to sleep with a pillow between your knees. Works for me.

Smitten Rookie
Smitten
Posted
  • Author

Crushed Ice was the BEST! I even craved cool air during my pregnancy WEIRD. I would get in the car and turn the air on high and just soak it in (obviously I was preg in the summer). I wasn't even hot.

Shelly

CarlaB Enthusiast
CarlaB
Posted
Crushed Ice was the BEST! I even craved cool air during my pregnancy WEIRD. I would get in the car and turn the air on high and just soak it in (obviously I was preg in the summer). I wasn't even hot.

Shelly

I was always HOT when I was pregnant. Drove everyone crazy because I'd have the house as cold as a meat locker and I'd turn down the A/C at work, too. This from a person who always had a low thyroid and was always freezing! (I've been gluten-free for 4 months and take 1/2 the thyroid I used to)

Smitten Rookie
Smitten
Posted
  • Author

I'm going gluten-free this week. So, I will be curious whether it effects my hypothyroidism.

Shelly

  • 2 weeks later...
michmash Newbie
michmash
Posted

Anyone else out there have RLS? If so, what do you do to try to relieve this? I can be up hours in the night with the constant erge to move my legs! Any suggestions would be appreciated!

Thanks!

michmash Newbie
michmash
Posted

Hi, This is one of my biggest complaints. I lose a lot of sleep with the same urge to move my legs. I find especially if I was on my feet more than usual that I experience this problem more than normal. I try to take B Complex vitamins, Potassium (bananas) and calcium along with lots of water on a daily basis since as a celiac--we do not absorb the vitamins as well as others. I also take a pain pill either Darvocet or Tramadol before bed and that helps the legs. If I do not take the pain pill, I usually wake up in the middle of the night moving my legs and tossing and turning. I am finding that even when I try to nap; my legs are needing to move and sometimes the nap is not happening, no matter how tired I am.

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