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'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!

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.

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

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!!

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.

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.

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).

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?

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, 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. )

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!

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

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!

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.

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.

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!

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!

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

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)

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

Shelly

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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.

What's your story? How long have you been gluten-free if you are? Any chance you may have some deficiencies like iron?

Hi Chelse I had a problem with charley horses at night but after putting a bar of Ivory soap under my top sheet it stopped. I know it sounds crazy but it worked for me. It's cheap and worth a try good luck.

Hi all! Does anyone else get frustrated with doc? Called GE about RLS, got the nurse, doc is out til Monday. She said I should contact my Family Practioner. Called him, he has to research Celiac. He calls back wants to put me on Requip. I'm thinking it might be anemia, but doc wants to try Requip first. I JUST WANT TO SLEEP!!!
I'm really confused about supplements and how my body will absorb them since my body isn't really absorbing very well (just diagnosed & gluten-free less than a month) Have had 2 accidental gluten exposures. ARGH!!!!!!!
Has anyone taken the drinkable supplement called VIBE?

Hi everyone: I'm new here. I have RLS and wont live without my Reuipp meds. They saved my life. Ok, not literally, but it was a GREAT help. I suffered for years, progressively getting worse, until my Dr put me on this med. Now I don't let a month go by without havine a nice full bottle ready for me in my med cabinet. Told you I can't live with out it. My legs start about 5pm and get more restless as the night goes on. Now I sleep, and even read a book without being distracted by my legs, and back and shoulders. It moves on me. Lucky me.

My husband has RLS and does not have iron deficiency.....the Requip does it's job but he refuses to take it every night and Dr. feels that Requip will perform better if taken on a daily, nightly basis.

I don't have RLS but I do have the massive leg/foot cramps that make me jump out of bed (screaming sometimes!). I get them when I play tennis also (but not when I run). I tried the whole banana/sports drink thing for potasium but that just made it worse, then I noticed that I ALWAYS got the cramps at night when I had had a banana that day, so I stopped eating bananas and they went away. Been gluten-free for 3 weeks now, so don't think the gluten has anything to do with it. I was also always an ice (and candy) chewer (still am - can't have anything in my mouth that I don't chew on!) and was anemic when I was younger, but have been taking iron pills and my iron levels have been fine for the past 5 years or so (even when pregnant). Do have hypothyroidism - not sure if that is what is contributing to the leg cramps? I've just started adding a B12 and folate vitamin to my daily intake of multi/iron/calcium w/D vitamins, so curious to see if that, along with going gluten-free, helps the cramping.

BTW, my husband has RLS - keeps me up all night (if I do happen to fall asleep in between my night sweats/D/urination every 1-2 hours) - he won't get tested for anything or take drugs b/c he thinks dr's are a waste of time. Sometimes I have to agree with him

I have a friend with that and she is miserable I think she is also on a few medications and not so healthly diet. I emailed her an article I found that said lack of iron and I think E. Also SamE helps.I don't know if SamE is gluten free - I have some but haven't taken it yet. It is suppose to be good for depression and liver health. I think finding out the iron level is imp. because you can get too much. LindaLee

I'm assuming the bar of soap under the bedsheet is unwrapped? Does is matter what kind? I am going to try that (without telling my husband) to see if it helps his RLS

I have Narcolepsy, Cataplexy, Hasimotto's thyroid disease, Restless Leg Syndrome, arthritis in both knees and right foot and Celiac Disease.
I take Pramipexole Dihydrochloride for RLS. It helps alot but doesn't take away the feeling totally. I am sometimes awaken at night with really bad cramps in my calves or feet. The only thing that seems to help is for me to get into the shower and let as hot of water as I can take run on my legs. It usually takes about 10 minutes then I dry off and go back to bed.

I have RLS, but I do not take any meds for it. It is a result of my sleep apnea. If I do not use my CPAP machine every night, my legs don't stop. When I use my machine, I have no problems.

I take enough medicine with my other medical problems, so if I can avoid another one, I do.

Sehlli

Since I started this post my RLS has gotten SO much worse. Last Labor Day I broke my ankle and I get it so bad in that leg. I started running last week and it intensified it. I was up 2-3 times a night last week. I thought I was going crazy! Sometimes I wouldn't get to sleep until 4:00 a.m. I FINALLY seen my Family Physician today. She prescribed Requip. I hope it works with the first dose. I need a good night sleep! I will let you know how it works out for me. She is also running tests to see if I'm anemic.

The bar of soap didn't work for me. I heard it really works for leg cramps....but I don't get those. I heard Ivory or Zest is the best.

Shelly

I have never heard anything about the bar of soap...placebo effect perhaps? Let us know what the iron tests show...I still think this is one of the top causes of RLS. And a better solution than having to go on meds...but it that is the only option...sleep is a must! Let us know...

I personally don't think the soap works, but did try it as a despirate attempt to get some sleep. I agree with you, I hope there's another option other than a medication. I really don't like taking medication, but if it's my only option to get some sleep, I need to do that. ;o)

I will let you all know the results of my tests.

Shelly

Just an update. All my tests for anemia and other's came back normal.

Last night was the first night I slept ALL night. The Recuip is working.

Dionnek, I heard pickle juice works great for leg cramps. My husband learned that in a coaching class.


Shelly

Funny, I have been eating a lot of pickles lately since going gluten-free (one month now) and haven't had any leg/foot cramps in that time - coincidence maybe, but that's funny you mentioned that. My husband (who has the RLS) LOVES to drink the juice out of the pickle jar - yuck! I'll have to encourage him to do that more now

Shelly-
Well, everything is normal! The body is a curious thing ! Glad the meds are helping. I guess you can continue to pursue other causes. If I come across anything, I'll let you know... Glad you slept

If you do not have RLS and you are not eating enough carbs. you could need to start on Calcium and Magnisium. (sorry my spelling stincks) When my husband did the Atkins diet the DR. told to to increase those in his vitamine intake.......Jesus loves all of you......Deena

I am pretty sure I have RLS, although don't have a formal diagnosis. It has definitely got worse for me since the coeliac symptoms have manifest themselves. I'm pretty sure its vitamin/ mineral deficiency for me, but need to do some research on that.

What I'm interested in, is what effect it has on everyone's sleep. I've never slept particularly well, but with the onset of coeliacs, it has become much worse, waking up several times a night, together with breif 'surfacings' from sleep. i don't know what causes it - my psychiatrist ruled out mental health issues and my depression/ anxiety is loads better now - so I assume it must be something physical and am suspecting RLS. Could that be right?

I'm just not keen at all on talking to my GP about it, can't see that getting anywhere unfortunately. But I might ask for my iron to be checked out again as I've been anemic a lot.

I desperately need more sleep....tiredness seems to be taking over my life at the moment, and I know it's the major trigger for my depression <<yawn!!>>

Are you not sleeping because of the restless legs? I was not sleeping because of the constant urge to move my legs. I would get up a few times in the night and rub the rolling pin over my legs. I am sleeping really well now with the medication Recuip. I really struggled with being on another medication. But, it's well worth it.......i'm sleeping now! I went to my regular family physician for the problem. Hope you find sleep in the near future! I know how you feel......I've been there!

Shelly

I had/have RLS too. However, it was a secondary condition to my sleep apnea. When I started using my breathing machine (CPAP) at night, it stopped. But it is very aggravating!

My husband noticed a strange (but documented in PDR) side effect from Requip. His one leg has edema.

The only side effect I get is an upset stomach even when I take it with food. I'm down to 1/2 dose now. My stomach can tolerate it better.

Hi I have RLS, I had them for about 4 yrs before my doctor finally gave me miripex. This works wonderful for me, I only have to take 1/2 of one. This all came with a inability to sleep no more than 1 hr at a time, I would get them so bad I needed to pace around the house. I found that rocking helped, or getting cold, then I could go to sleep for another hour then do it all over again. I was only getting about 4hrs of broken sleep in a 24 hour period it was awfull. I tried taking iron supplements, but found that it didn't work. I read that its not being anemic, its the brains inability to open a door to let the iron into the cells. This was showen in autopised brains. Although I think that being gluten sensitve and not being able to absorb nutrients doesn't help the situation. I've been gluten free for 9 weeks now, I really feel better. Although I tried to go gluten free before my doctor told me it was just IBS and gave me dicetel, I was convinced, till I started getting more nero problems. So I did more research and decided that gluten free is what I needed to do. I'm still taking the miripex but thinking that sometime in the near future I'm taking that out of my diet too!!!!! I also read that Magnesium is the mineral to take for muscle cramps. Calcium is in alot of things but magnesium is not, also that magnesium is found to be more deficient in celiacs and gluten sensitive indivduals. Well thats my thoughts I hope it helps someone. Patricia

Last month hubby's neurologist mentioned that neuropathy is associated with RLS. Now the question is is RLS associated with Celiac?

I am posting on this thread because my GP has been calling my nocturnal myoclonous (myoclonus) RLS, so maybe they are related.

The difference is that either my legs, arms or abdomin would jerk whenever I went into REM (Diagnosed by a sleep disorder study). I didn't feel the jerking at first. But as the years went by it got more pronounced and more frequent.

My nocturnal myoclonus has cleared up by going gluten free. 11 months now.

I also am taking an iron supplement and B12 injections now. But the symptoms started going away after going gluten free and prior to taking the supplements.

Marcia