Restless Legs Syndrom (rls)

[debmidge]

Please don't think this is a strange question, but are you on anti depressants?

Anti depressants cause strange body shaking in people with RLS (neurologist told my husband this because hubby gets extreme shaking on anti-depressants and he cannot take them due to this.

[GFAngel]

I goofed with my first post.

[GFAngel]

Hi Everybody! This is my first post; wanted to share my RLS story. As a child I remember having aching legs A LOT. I also used to sleep walk (don't know how that fits in, but I'm throwing it in anyway). My mom would call my aches "growing pains" so I just thought I was growing! It hurt and was obnoxious! BTW-I'm only 5'2"!

I continued to have those "aches" and the older I got, the more I had that and "restless legs" - by this January, pre-CDdx, I was going out of my mind trying to watch tv with wiggly legs-RLS. It got so bad I even wrote it in on the gastro's symptom sheet under "other symptoms" BEFORE I knew about connection with nutrition! I noticed the aches at night mostly, and not so much RLS (maybe they're related-probably same thing but w/varying degrees?). I used to treat such nights with ibuprofen, and the pain subsided enough so I could sorta sleep-you know how that goes.

Well, I've been gluten-free for about 7 months now, and no more RLS. I still have some mild mild aches. What a relief. I wasn't always bothered by it in my sleep, but I never slept much pre-dx either. I'm not much of a snorer (but did snore when I was pregnant). Don't know about sleep apnea; but don't think I have that. (You never know though, do you? I've learned that much!) I'm 125 lbs overweight - and gaining since gluten-free diet. But that's a different rant!

I've been hypothyroid 13 yrs now. I know I was borderline anemic for at least 10 years, documented, prior to celiac disease dx. "Take iron!" the doc would say. I did and, "nothing" changed. So I'd quit cause of the constipation. I was constipated enough without any help!

My hemoglobin was always "borderline low" but not lower than the ref. range. I never brought up my RLS at an appt either though. I never thought about it. I was mostly there for my other stuff: thyroid, skin tags, subcutaneous zit thing (very medical term ), chronic fatigue, depression, edema and hip joint pain or whatever. Come to think of it, I didn't go to the doctor much until I got pregnant at 28 yrs. (and that's when I really started going downhill). Anyway, doc ordered an x-ray of my ankle, saw nothing, and it ended there. I wouldn't think you'd see much "tissue issue" with an x-ray for edema anyway. Somehow I thought since it was in the same left side, that the hip pain and the edema would be related. I've been 13 years with the hip pain and no answers. I have moved a lot, saw 7 different doctors for it.

Anyway, my latest move last Nov, I saw a doc for annual thyroid check to get new Rx. I told him I was soo tired. I'm fat, so he thinks I just need to lose weight? He did nothing. Now I'm not my best advocate, as I'm depressed and have brain fog to boot. Next appt in January I ask for iron test. He DID do a full iron panel with serum ferritin (which I'd never had before) - voila ...

Result Reference Range

TIBC 396 (250-450 ug/dL)

UIBC 355 (150-375 ug/dL)

Iron, Serum 41 ( 35-155 ug/dL)

Iron Saturation 10% (Alert) (15-55%)

Ferritin, Serum 5 (Low) (10-291 ng/dL)

...on to colonscopy (and I ask for endoscopy) and got my celiac disease dx! Thank goodness no cancer!

My calcium was 21 right after dx, now is 46. I don't know what my magnesium was. I just saw this same doc again this morn. for my hip pain because I want answers! He was more helpful cause I had my wits about me this appt! Tonight I go in for an MRI. He suspects my hip pain is not "bone or joint" related at all (which I thought it was because my vit D was a 21 (ref. range being 20-100 ng/mL) (and a different doc said I was osteopenic), but sciatic(a)/nerve-related. That may be, as sometimes I feel like I pinch it and almost fall to the floor in pain. If the MRI is inconclusive, then on to a different path. He said my edema is a low priority, maybe when I'm more active, it'll subside. When my hip pain subsides, I'll exercise! Prior experience makes me believe this - this pain was initiated by a too long a stint (2-4 hours) sitting on the driveway planting pots. I also used to sit and scrapbook a lot! Now I sit too much at this computer! He also said people get this from sitting on bleachers watching their kids' games a lot!

He said ibuprofen and some other meds will make you retain water also. (I was taken a lot of it for "anemia" headaches and the other aches ... but not so much now and I still have it ..) Anyway, this path will take me to learning more about nerve issues I think. What a Pandora's Box of medical knowledge I'm gaining! I had no idea how to take care of myself; I'm grateful to be aware enough do so now. And thanks also to forums like these where I can turn to for advise from quite a collective/combined experience!

Point is: more nutrition-less RLS for me. Sorry, if I jump around. I'm ADD too - and totally NOT hyper

[ViewsAskew]

I know this thread started a long time ago, but wanted to offer some info that may help everyone with their RLS.

There are two types of RLS, primary and secondary. Primary is an inherited condition; the genes are currently being identified. There is a 50/50 chance you will have it if one of more of your parents have it. This manifests as early as infancy but always before age 40-45. Many children are misdiagnosed as having growing pains. There is also some research indicating the RLS may be the cause of some ADD/ADHD. Secondary is when you have RLS because of another disorder - this list is very, very long. The last I looked, there were over 20 other diseases/disorders to which RLS can be secondary. This includes celiac, diabetes, anemia, kidney disease, fibro, pregnancy, and many others.

RLS occurs while awake. There are four criteria essential to a diagnosis - a weird/strange/creepy/painful sensation in ANY body part (though legs are most common), the sensation is relieved by movement, the sensations are worse at night (though they may be present 24/7), and the sensations start with rest/relaxation. No test is available to diagnose it; anyone can pretty much self-diagnose. If anyone wants to know what the researchers have discovered about why we get RLS, let me know.

PLMD, or periodic limb movement disorder (which used to be call nocturnal myoclonus), often occurs with RLS. Estimates are that 85% of those with RLS also have PLMD. PLMD occurs primarily while sleeping, though may also occur while awake. In PLMD, the affected limb, usually the foot, calf, or leg, jerks/extends every so many seconds. Some people are bothered by this (it can prevent getting to Stage 3-4 sleep), though many are not. If you are not bothered, no treatment is needed. This often also occurs during sleep apnea. A sleep study is required for diagnosis.

Treatment for RLS is complicated, as there are no medications for it that were developed just for it. All available meds were/are used for other problems primarily, and just happen to help some people with RLS. There is no drug that helps all RLSers, but there are about 30 drugs used to treat it.

Treatment should not start with medication unless RLS is preventing sleep/work and the lack of sleep is causing problems.

1. First thing should be a blood test for BOTH serum ferritin and anemia. While doing this, the doctor or you yourself should look at all medications you take. There are many medications that can cause/worsen RLS including Benadryl, antidepressants (both older and newer), all anti-psychotics, OTC cold preparations with Benadryl (dipenhydramine), Dramamine, and others.

2. Then decide if RLS is primary or secondary. If no one else has it in your family, it doesn't mean it's not hereditary - they may just not talk about it. If other people in your family have it, you could have secondary only or in addition. For example, you might have inherited RLS, but are pregnant so have secondary on top of the primary. If the RLS is secondary, the primary problem needs to be resolved. Most times, the RLS will also resolve when the primary problem is treated. For example, many celiacs have it when they are still eating gluten and not absorbing iron. When the gut heals, iron is absorbed, and the RLS goes away. However, some causes of secondary, such as injury (broken bones) or back injury/surgery/injections, cannot really be healed, so the RLS will not really get better when the bone is healed, or the back in healed.

3. Check your diet/lifestyle Many things can worsen RLS - caffeine, smoking, alcohol, sugar (for some people, especially hypoglycemics), too much exercise and too little exercise, hot weather, too tight clothing, dry skin, irregular schedule, and other things that are individual.

4. When the blood tests come back, determine if you need to take an iron supplement, but never take iron without getting a test first! If you are anemic, take iron. If your ferritin is below 50, take iron. Please note that 50 is much higher than the low end of the range. If your doctor doesn't know much about this (chances are high he/she will not) take information from a reputable site, such as the RLS Foundation's site (www.rls.org) and show it to him or her. The low range is often between 10 and 20, so your doc won't know you need iron. However, many people's RLS will resolve when the ferritin gets over 50. It may take several months of iron therapy to get it to move over 50 - increasing iron is slow treatment and you will not get immediate relief, if you get relief (40% of those taking iron do not show an improvement.)

5. After doing all of this, see how your RLS is. If you need help reducing/eliminating the RLS while working on increasing your iron, or the iron is not low, and your RLS is keeping you from having a good quality of life (interferes with sleep, activities, work, etc.), then you are a candidate for drugs. It's just my personal belief, but please don't withhold drugs from yourself if the RLS is affecting your life. On the other hand, don't take them until you've gotten off meds that may make them worse, get your ferritin tested, or see if a secondary problem may be causing the RLS.

In terms of meds, the Mayo Clinic created an algorithm for patients and doctors to use. According to it, the primary meds used are dopamine agonists. Requip and Mirapex are the best choices. Sinemet should not be used on a daily basis, though is works very well if you take it intermittently. If you need help less than 5 days a week, Sinemet is a great choice. If you need it 5 or more days a week, Mirapex or Requip are the best options. If these are not tolerated or don't work, other options include anti-seizure meds (Neurontin, Gabitril, etc.), benzos (Klonopin, Restoril, etc.), or opioids (Methadone, Levorphenol, hydrocodone, etc.)

6. Get educated :-). Just like celiac disease, being educated about RLS will really help you manage it better and do better. Most people with RLS can be treated to have zero symptoms. If you still have symptoms and are taking meds, most likely you need other meds, additional meds, or a new doctor, or all of the above!

This link is to a post on the RLS Foundation's message board. It gives much more detail than I just did, including links to the algorithm, the criteria, and many articles that you can review or take to your doc to help educate him or her. The sad truth is that there are many similarities between RLS and celiac. Most doctors don't know much about either of them, and mistreatments abound. Many doctors start people off on the wrong drugs (Sinemet or quinine or Klonopin) when none of those are considered primary (or in the case of quinine, appropriate at all!). The more you know, the better your treatment. Open Original Shared Link

Hope this helps someone.

[Smitten]

Thank you so much for that information!

I'm wondering if I have both primary & secondary RLS. My dad and Grandma (his mom) both have symptoms of RLS. But, not as sever as mine. As a child I can remember having really bad leg aches when I went to bed at night. I broke my left ankle in September of last year and that's when my RLS REALLY kicked in. I have it in both legs but, a lot worse in my left leg.

I have not been clearly been dx's with celiac therefore, I have not started a gluten free diet. I'm hypothroid and also take Lexapro for anxiety. I sometime's wonder if the Lexapro might be partly a culprit of my RLS. All my iron test came back ok so, I don't think it's a nutritional problem. I have RLS whether I exercise or not.

I have to say that requip is the only thing keeping me sane at this point. It's so frustrating when my legs won't let me sleep! I can rarley even take a Sunday afternoon nap anymore...... my legs won't let me.

Shelly

[wacky~jackie]

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)

CarlaB,

I'm so glad to hear that you were able to lower your thyroid medicine. I'm on a very high dosage (have been for a long time) and now I wonder if it's because I'm not absorbing it properly. Can't wait to have it checked again after being gluten-free for awhile.

[jenvan]

Ok, just wanted to reiterate on the whole iron-RLS connection. I just read this research below:

Recently, several research teams have taken a closer look at what might cause primary RLS. In particular, recent studies at Johns Hopkins and Pennsylvania State Colleges have found evidence for brain iron deficiency as a cause for primary RLS. This was first demonstrated in cerebrospinal fluid studies and more recently by the first-ever autopsy analysis of the brains of people with RLS. The autopsy studies reported that cells from the portion of the brain called the substantia nigra showed a deficit in one of the proteins that regulates iron status. However, this evidence suggests that the iron insufficiency in the brain of RLS patients comes directly from a failure of normal iron regulation. In terms of finding a cure, this is good news. The results of this study show that there is no brain damage in people with RLS and that drugs that target the problem of iron uptake may be one way to approach future developments of a treatment.

[white]

Hi all,

I dont know what it is, RLS or something else - but my husband has similar problems, his legs and arms jerks, he says he feels like somebody is tickling him so he has to move his legs and arms. when he tries to fall in sleep, the sympthoms get worse. We stay up all night waiting them to go away, every time he tries to go into sleep, his body shakes intensely and legs and arms jerk.

his previous neurologist gave him antidepressant since he did not think that my husband has any neurological problem - but I know that my husband is not depressed. We are thinking now, the antidepressant (lepraxo) is making the sympthoms worse. Also, one day we went to ER for his tiredness, at that day, they gave him a sedative, after we came home, his body was shaking so badly that I had to take him back to the ER...So obviously, antidepressants are just making this thing worse.

Anyway, now we are seeing a new neurologist, he is running bunch of other tests (MRI, EEG, etc) and also checking many things in his blood (zink, calcium, vitamin D, etc.). He even referred us to a new GI specialist to confirm that my husband has celiac. I think we are in good hands, hopefully, we will figure this thing out.

My husband discovered that if he rests (not sleep) without doing anything, just laying on the floor, watching fishes and meditating he has less sympthoms - they come less frequently with less intensity.

[Guest Villanfam]

I know this thread started a long time ago, but wanted to offer some info that may help everyone with their RLS.

There are two types of RLS, primary and secondary. Primary is an inherited condition; the genes are currently being identified. There is a 50/50 chance you will have it if one of more of your parents have it. This manifests as early as infancy but always before age 40-45. Many children are misdiagnosed as having growing pains. There is also some research indicating the RLS may be the cause of some ADD/ADHD. Secondary is when you have RLS because of another disorder - this list is very, very long. The last I looked, there were over 20 other diseases/disorders to which RLS can be secondary. This includes celiac, diabetes, anemia, kidney disease, fibro, pregnancy, and many others.

RLS occurs while awake. There are four criteria essential to a diagnosis - a weird/strange/creepy/painful sensation in ANY body part (though legs are most common), the sensation is relieved by movement, the sensations are worse at night (though they may be present 24/7), and the sensations start with rest/relaxation. No test is available to diagnose it; anyone can pretty much self-diagnose. If anyone wants to know what the researchers have discovered about why we get RLS, let me know.

PLMD, or periodic limb movement disorder (which used to be call nocturnal myoclonus), often occurs with RLS. Estimates are that 85% of those with RLS also have PLMD. PLMD occurs primarily while sleeping, though may also occur while awake. In PLMD, the affected limb, usually the foot, calf, or leg, jerks/extends every so many seconds. Some people are bothered by this (it can prevent getting to Stage 3-4 sleep), though many are not. If you are not bothered, no treatment is needed. This often also occurs during sleep apnea. A sleep study is required for diagnosis.

Treatment for RLS is complicated, as there are no medications for it that were developed just for it. All available meds were/are used for other problems primarily, and just happen to help some people with RLS. There is no drug that helps all RLSers, but there are about 30 drugs used to treat it.

Treatment should not start with medication unless RLS is preventing sleep/work and the lack of sleep is causing problems.

1. First thing should be a blood test for BOTH serum ferritin and anemia. While doing this, the doctor or you yourself should look at all medications you take. There are many medications that can cause/worsen RLS including Benadryl, antidepressants (both older and newer), all anti-psychotics, OTC cold preparations with Benadryl (dipenhydramine), Dramamine, and others.

2. Then decide if RLS is primary or secondary. If no one else has it in your family, it doesn't mean it's not hereditary - they may just not talk about it. If other people in your family have it, you could have secondary only or in addition. For example, you might have inherited RLS, but are pregnant so have secondary on top of the primary. If the RLS is secondary, the primary problem needs to be resolved. Most times, the RLS will also resolve when the primary problem is treated. For example, many celiacs have it when they are still eating gluten and not absorbing iron. When the gut heals, iron is absorbed, and the RLS goes away. However, some causes of secondary, such as injury (broken bones) or back injury/surgery/injections, cannot really be healed, so the RLS will not really get better when the bone is healed, or the back in healed.

3. Check your diet/lifestyle Many things can worsen RLS - caffeine, smoking, alcohol, sugar (for some people, especially hypoglycemics), too much exercise and too little exercise, hot weather, too tight clothing, dry skin, irregular schedule, and other things that are individual.

4. When the blood tests come back, determine if you need to take an iron supplement, but never take iron without getting a test first! If you are anemic, take iron. If your ferritin is below 50, take iron. Please note that 50 is much higher than the low end of the range. If your doctor doesn't know much about this (chances are high he/she will not) take information from a reputable site, such as the RLS Foundation's site (www.rls.org) and show it to him or her. The low range is often between 10 and 20, so your doc won't know you need iron. However, many people's RLS will resolve when the ferritin gets over 50. It may take several months of iron therapy to get it to move over 50 - increasing iron is slow treatment and you will not get immediate relief, if you get relief (40% of those taking iron do not show an improvement.)

5. After doing all of this, see how your RLS is. If you need help reducing/eliminating the RLS while working on increasing your iron, or the iron is not low, and your RLS is keeping you from having a good quality of life (interferes with sleep, activities, work, etc.), then you are a candidate for drugs. It's just my personal belief, but please don't withhold drugs from yourself if the RLS is affecting your life. On the other hand, don't take them until you've gotten off meds that may make them worse, get your ferritin tested, or see if a secondary problem may be causing the RLS.

In terms of meds, the Mayo Clinic created an algorithm for patients and doctors to use. According to it, the primary meds used are dopamine agonists. Requip and Mirapex are the best choices. Sinemet should not be used on a daily basis, though is works very well if you take it intermittently. If you need help less than 5 days a week, Sinemet is a great choice. If you need it 5 or more days a week, Mirapex or Requip are the best options. If these are not tolerated or don't work, other options include anti-seizure meds (Neurontin, Gabitril, etc.), benzos (Klonopin, Restoril, etc.), or opioids (Methadone, Levorphenol, hydrocodone, etc.)

6. Get educated :-). Just like celiac disease, being educated about RLS will really help you manage it better and do better. Most people with RLS can be treated to have zero symptoms. If you still have symptoms and are taking meds, most likely you need other meds, additional meds, or a new doctor, or all of the above!

This link is to a post on the RLS Foundation's message board. It gives much more detail than I just did, including links to the algorithm, the criteria, and many articles that you can review or take to your doc to help educate him or her. The sad truth is that there are many similarities between RLS and celiac. Most doctors don't know much about either of them, and mistreatments abound. Many doctors start people off on the wrong drugs (Sinemet or quinine or Klonopin) when none of those are considered primary (or in the case of quinine, appropriate at all!). The more you know, the better your treatment. Open Original Shared Link

Hope this helps someone.

You stated that there are two types of RLS Primary (genetic) and Secondary (secondary symptom of something else). Well, celiac disease is also genetic. Could it be that some of those people that have Primary RLS and have had it since childhood and have relatives with it as well, actually have undiagnosed celiac disease?

Take my Mom for example. She has had RLS since childhood and so does my sister (they also have several Celiac symptoms even some diff. then myself). I have Celiacs (since childhood, but just dx) and so do all three of my kids. I don't have RLS but, I remember never being able to just sit still. I would have to bounce my leg every time I sat down. I would drive everyone crazy because I would make the dinning room table shake while we were trying to eat dinner .

My Son (Aspergers & ADHD) and one Daughter (extremely tiny for her age) get very sore legs especially at night, like my mother did as a child. I have to give them Tylenol or IBProfin just so they can sleep.

My Mom is waiting to be tested for celiac disease until after X-MAS so she can eat as much gluten as she can, so hopefully we will get an accurate blood test result. I am pretty positive that she has it too. I mean, I have to have gotten it from at least one of my parents, and she is the one with all the symptoms

[ViewsAskew]

You stated that there are two types of RLS Primary (genetic) and Secondary (secondary symptom of something else). Well, celiac disease is also genetic. Could it be that some of those people that have Primary RLS and have had it since childhood and have relatives with it as well, actually have undiagnosed celiac disease?

Well, anyone with celiac can have RLS. The RLS could be primary, secondary, or both! I often suggest to people with RLS to get a celiac test, especially if they don't have any RLS in their family, especially if they have any other "odd" neurological symptoms or anemia. RLS is only secondary to celiac disease (as far as I know) when the person is anemic. It's the lack of iron causing the RLS. It's the celiac disease and absorption problems causing the anemia.

Though both are genetic, the genes aren't related to each other, so having primary RLS as a child wouldn't indicate undiagnosed celiac disease. It would just be one of those coincidences. It would be the secondary RLS that indicated celiac. The difficulty is knowing if the RLS is primary or secondary. For me, it's easy. I'm the third generation in my family to have it. But some people's families never discuss it, so they don't know if anyone else has it or if there is a secondary cause (or it's idiopathic - no known cause).

My partner has primary RLS and celiac. But, they aren't related in any way. His RLS got worse when he was undiagnosed but had active celiac disease (from the anemia). Once he went gluten-free, the anemia stopped and the RLS went back to very mild. His sister has RLS, as does his nephew, but neither of them have celiac disease (both have been tested).

Hope this is as clear as mud!

[coveowner]

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

[Egg]

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.

[jacqui]

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

[runningGF]

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

[darlindeb25]

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.

[UNCHeel]

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.

[carlag]

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.

[mamabear]

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.

[CarlaB]

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.

[jerseyangel]

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....

[mamabear]

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!!!!!!!!

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[jerseyangel]

Thanks for that article, Ann

It sure seems to fit what happened with me.

[mamabear]

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 ........Sorry!! Way off topic!

[little d]

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

[Susanwisely]

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.