Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Restless Legs Syndrom (rls)


Smitten

Recommended Posts

Smitten Rookie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 88
  • Created
  • Last Reply
Guhlia Rising Star

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
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

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

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



debmidge Rising Star

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
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

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
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

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

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

jenvan Collaborator
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

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

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

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
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

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

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

Smitten Rookie

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
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

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

Shelly

  • 2 weeks later...
michmash Newbie

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

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    2. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    3. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    4. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    5. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,883
    • Most Online (within 30 mins)
      7,748

    ammocat
    Newest Member
    ammocat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jay Heying
      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.