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Restless Legs Syndrom (rls)


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#61 coveowner

 
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Posted 04 January 2007 - 11:19 AM

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 developed Restless Legs several months ago and was driving my husband crazy because I would kick out and thrash while I was sleeping. My gyn prescribed Requipp which works great!!! The normal dosage is 1 mg. However, she prescribed .25mg to begin and work up to 4 tablets slowly. However, I found that I do fine on 2 or 3 about 2 or 3 hours before bedtime. My poor husband is much relieved!! I was diagnoised with Celiac disease about 6 years ago after about 40 years of symptoms and lots of trips for GI series (which found nothing!!) I had no idea that RLS was a side effect of Celiac.

And it's so funny, I used to chew my ice when I would get to the bottom of my tea glass. I still crack an ice cube occasionally and my husband gives me "that look"!! Ha!

Maybe I should inform my gastrointerologist or my endocrinologist (Yes, I also have a wacko thyroid) about the RLS. I never made the connection, just wondered why I got it after all these years. I take a load of vitamins and for the first time in my life am not anemic.

Coveowner
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#62 Egg

 
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Posted 17 February 2007 - 09:18 PM

Butcher's Broom is a great, natural way to relieve RLS. I've used it as needed for years. It takes a little while to kick in, but once it does, legs are back to normal. I've never noticed any side effects, but make sure there's no gluten in the capsules.

I don't think my RLS is related to celiac, but it's annoying, whatever the cause (I've heard of lots of potential causes, but no one seems to be sure - although anything that helps improve circulation seems to help, according to what I've read).

I like the Butcher's Broom because it's so mild, so I don't feel like I'm potentially creating more problems with my solution (as I do with prescription drugs for anything). It doesn't get to the source of the problem, but it helps get rid of it for the night.

Good luck.
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#63 jacqui

 
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Posted 18 February 2007 - 05:19 AM

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!



Sorry, no idea. I just had a sleep study and found out I have insomnia and a touch of RLS. All my doc said was the basic - stop caffeine early in day, do not use your brain an hour before bed(What??), don't sleep with the TV... Sorry, I forgot this was for RLS, obviously the things I just listed is for insomnia.

I have seen commercials for an RX but if you haven't had a sleep study your doc will probably want you to do that first.

Sweep unRLS dreams

Jacqui
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IBS 1994
Endometriosis
Hashimoto's auto immune disease
Diverticulosis
Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease
HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!
Insomnia
Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel
Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.


#64 runningGF

 
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Posted 13 April 2007 - 11:03 PM

I think I might have rls. I also have Celiac Disease. Is there a corelation?
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#65 darlindeb25

 
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Posted 14 April 2007 - 01:56 AM

Amazing how many of us chewed ice. I used to have a little bit of tea with my ice. ;) Then it got so that I just wanted ice. My sister was the same and we would purchase bags of ice to keep us in ice. She is celiac too and her iron level was so low, she had to have iron IV's. Neither of us crave ice any longer--as a matter of fact, I never have ice anymore.

As for the legs, recently I have noticed this uncomfortable feeling. Sometimes, it's an ache, like a toothache that won't go away. Before going gluten-free, I had incredible itching periods, usually in the evening. Just recently, the aching has begun. I figured it must be another symptom of my neuropathy. I have been reading about RLS this morning online and read that it can be associated with thyroid problems--which is something I am going to talk to my doctor about this week anyways.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#66 UNCHeel

 
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Posted 27 April 2007 - 11:44 AM

If anyone lives in the Raleigh Durham,NC area one of the local research groups called me to be a part of study for a new RLS med. Holler and I'll put you in touch if you're interested.
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#67 carlag

 
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Posted 02 May 2007 - 02:23 AM

Thanks for all your thoughts about this. My husband is always asking me if I can please stop moving my legs around in bed. Besides the movement, he also has to endure the clicks from my knees, which he is convinced I make happen just to annoy him. (most of my joints move a bit too freely - related to Ehlers Danlos syndrome - some of them are quite noisy when they move)

I had never thought about restless legs in relation to c.d. - interesting to realise that other coeliacs also have a hard time being still.
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Diagnosed March 2003
Follow-up gastroscopies indicate gut still hasn't improved after 3 years of a gluten-free diet
Gastroenterologist now uses the term 'refractory coeliac disease' when ordering blood tests
Steroid trial caused intolerable gut symptoms, like pre-diagnosis days

#68 mamabear

 
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Posted 04 May 2007 - 09:03 AM

To me , RLS is the leg version of IBS !! Still a syndrome(group of symptoms) and not a bona fide diagnosis. It is a descriptive "diagnosis",and the source of the symptoms should be sought out and attempt to correct the reason. Yes, medications can work for RLS, but then again,so does Immodium and Levsin/Pamine/Symax for IBS. And sometimes, we know why it is happening, and attempts to correct the cause fail......so we are stuck with treating the symptoms only. BTW...many patients don't want to take Requip(originally made for Parkinson's Disease) because of the side effect profile of falling asleep during activities of daily living ,like driving!!!!! That is a printed warning in the package insert.
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Iron deficiency without anemia, unexplained weight loss 2/2003
Positive celiac biopsy 4/2003
Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

#69 CarlaB

 
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Posted 04 May 2007 - 09:14 AM

I recently mentioned to my Lyme doctor's assistant that I had started taking iron again because my RLS had started acting up when I got off it. She was amazed that I had figured out a connection because there has just been a study that shows a connection between anemia and RLS. As long as I'm supplementing iron, I have no RLS.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#70 jerseyangel

 
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Posted 04 May 2007 - 09:38 AM

I recently mentioned to my Lyme doctor's assistant that I had started taking iron again because my RLS had started acting up when I got off it. She was amazed that I had figured out a connection because there has just been a study that shows a connection between anemia and RLS. As long as I'm supplementing iron, I have no RLS.

That's interesting--I had RLS for years (and at the time didn't even know that it had a name) and I was also anemic. I was not good about taking my iron because of the GI side effects, so I took a multi w/iron and lived with the whole thing.

6 months after I began the gluten-free diet, I had blood tests that indicated my hemiglobin (which had been 8) was 14.6! My RLS symptoms also went away. Of course a lot of other things got better eventually on the gluten-free diet, but who knows? Maybe the RLS was tied to the anemia....
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Patti


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#71 mamabear

 
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Posted 04 May 2007 - 03:43 PM

That's interesting--I had RLS for years (and at the time didn't even know that it had a name) and I was also anemic. I was not good about taking my iron because of the GI side effects, so I took a multi w/iron and lived with the whole thing.

6 months after I began the gluten-free diet, I had blood tests that indicated my hemiglobin (which had been 8) was 14.6! My RLS symptoms also went away. Of course a lot of other things got better eventually on the gluten-free diet, but who knows? Maybe the RLS was tied to the anemia....


This is a recent article that shows RLS is primary or secondary, and that the secondary causes should be eliminated(pregnancy,chronic kidney disease or iron deficiency(=ferritin deficiency)) before you just treat with medication. Celiacs very commonly have iron deficiency, so that being said.....correct the iron before you treat the legs!!! BTW that great term "idiopathic" means we just don't know why!!!!!!!!

http://www.ncbi.nlm....ol=pubmed_docsu
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Iron deficiency without anemia, unexplained weight loss 2/2003
Positive celiac biopsy 4/2003
Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

#72 jerseyangel

 
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Posted 04 May 2007 - 04:00 PM

Thanks for that article, Ann :)

It sure seems to fit what happened with me.
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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

#73 mamabear

 
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Posted 04 May 2007 - 05:31 PM

Thanks for that article, Ann :)

It sure seems to fit what happened with me.


Glad to be of help!! I am inexplicably attracted to PubMed....I think it's an addiction.......hmmmmmmmmmm..maybe I'll put in a search for TMI/celiac/night owlishness/insatiable desire to hold a laptop as a leg warmer :D ........Sorry!! Way off topic!
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Iron deficiency without anemia, unexplained weight loss 2/2003
Positive celiac biopsy 4/2003
Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

#74 little d

 
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Posted 10 May 2007 - 06:37 PM

I don't know if I have RLS but I have to move my legs sometime when I am driving home from working the night shift. And I kick my husband alot while sleeping at night (it affects him more in this case) Driving home ya I guess you can say my legs a very restless and it is intenseified when I am absolutly tired from working and not getting enough sleep. I have not felt this in a while maybe because i have gluten-free for 2 weeks now.
Donna
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Fecal Antigliadin IgA 21 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)
Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

#75 Susanwisely

 
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Posted 17 May 2007 - 01:58 AM

I have RLS !! It is driving my boyfriend crazy at nights with me getting up to stretch my legs for a while, kicking him when moving around constantly. My legs now ache all day and at night. I was given Ammitriptiline for this anti-depressants but these made me worse. I wouldnt reccomend those to anyone. I have been told to try TOnic Water as it contains something, I dnt like the taste so I dont bother.
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