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Restless Legs Syndrom (rls)

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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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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!


~Angie~

Gluten free since May 2004

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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.


Dx celiac disease 2002

Positive bloodwork/Positive endoscopy

Lupus SLE/OA/HH/Hypothyroidism

Muscular neuralgia

5 of 6 children Dx celiac disease 2002

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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

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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!!


luvs2eat

Living in the beautiful Ozark mountains in Arkansas

positive blood tests and later, positive biopsy

diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day

Dairy free since July 2010 and NOT happy about it!!

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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.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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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.


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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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).


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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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?


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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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!


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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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...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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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!

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


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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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!


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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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.


Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06

Diagnosed: Gluten Sensitive through enterolab 11/17/05

Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06

I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein

Peanuts (can handle very small amounts)

Any kind of additives or preservatives

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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.


gluten-free since 2004!

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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


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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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


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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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!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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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

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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)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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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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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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