Hi! New here and pregnant. - Restless Legs Syn...

Restless Legs Syndrome
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Hi! New here and pregnant.

Emmarielee
Emmarielee

Hey everyone. I just found this site during my nightly rls marathon and I'm so incredibly thankful to find a community of people that I can fight this battle with.

A bit about me. I'm 32, have 2 daughters and another girl due in May. I've suffered with RLS since before my first pregnancy off and on. Each pregnancy it flares up and sticks around every single night. First pregnancy I didnt deal with this until the middle of my 3rd trimester. Second pregnancy it started late 2nd trimester, but this time it began around 9 weeks. I'm 17 weeks along now and I'm struggling through this. I dont fall asleep until about 5 or 6 am most days and as you can imagine it's really difficult to function properly during the day with two young kids.

Nothing I've tried is helping. I've done hot baths, massage, heating pads, vibrating leg pads, some topical pain balm, walking it out, stretches, iron increase, bananas..

I cant take medicine for rls during pregnancy. I'm just at a loss and it's getting worse by the day. I see my doctor on Friday and I'm praying she will at least put me back on my anxiety medication so I can fall asleep. Any advice for me during pregnancy? Theres gotta be something I'm missing. I'm waiting on my order of magnesium oil spray to arrive. Itll be here today.

Thanks for reading.

38 Replies
oldestnewest

Hi, congratulations.

I've never been pregnant, wrong gender!

However it sounds like you have an inherited predisposition aggravated by pregnancy.

Magnesium oil may help, but taking an oral supplement may be better.

It's a distinct possibility is that pregnancy has depleted your iron stores. Once depleted it's not easy to replace stored iron. Each successive pregnancy will deplete stores further.This may not result in anaemia.

The appropriate blood test is a test for ferritin. This needs to be at least 50 mcg/L and idleally over 100.

Note. "normal" ferritin level is not enough.

Emmarielee
Emmarielee in reply to Manerva

Thank you for replying! I'll talk to my doctor about the blood test. Its 7am and still no sleep.

Casscass1
Casscass1 in reply to Manerva

Manerva is correct. I will add- it takes a while to increase your iron with tablets (3+ months) as it needs to break the brain barrier and some doctors will advise a blood transfusion to give your iron a boost quickly.

There may be a safe medication to get you through to the end of your pregnancy but I’m not sure which ones would be advised.

Manerva
Manerva in reply to Casscass1

You may be confusing blood transfusion with iron infusion. A blood transfusion may be given in severe cases of iron deficiency anaemia, but is usually given for anaemia due to loss of red blood cells.

The advantage of an IV iron infusion isn't necessarily that it crosses the blood brain barrier any easier it's because it bypasses the system by which the absorption of iron from the gut is limited according to need.

Brain iron deficiency can exist without there being any iron deficiency anaemia, in which case iron taken orally will not be readily absorbed. That's why it takes a long time for depleted iron stores to build up.

There are some recommendations however that an IV iron infusion only be given in certain limited circumstances. Iron infusion during pregnancy wouldn't appear to be a good idea.

There doesn't appear to be any evidence that iv iron is any better than oral iron, just faster.

There are also more risks associated with infused iron, rather than oral iron, chiefly the potential for iron overload. In pregnancy this may be a problem if iron can readily cross the placental blood barrier.

The recognised way of increasing oral iron absorption is to take it every other day, NOT every day and to take a vitamin C tablet or drink a glass of orange at the same time.

Additionally "gentle" iron is less likely to cause constipation and a natural laxative (e.g. senna). or bulk forming agent can also be taken (e.g. lactulose.

Casscass1
Casscass1 in reply to Manerva

Thank you for clarifying!

My daughter got rls in 3rd trimester of pregnancies.

I made a magnesium( epsom salts and water, equal volumes) solution which she rubbed onto her legs. That sorted it.

Magnesium supplements could also help, but check with your Dr first. Mg ' ates' are considered best. Eg-- citrate. Etc.

Good luck.

Supplementary iron post birth may be a more long term solution, but constipation is a concern.

Emmarielee
Emmarielee in reply to Madlegs1

Thank you! I forgot to buy epsom salts at the store today so I've gotta make a trip out. I really don't know how much longer I can take this. I did get a magnesium spray today that I'm going to try tonight. I've got my appointment at 10:45 and I'm not wanting to go to sleep at 7 again!

Congratulations and welcome to the site. My RLS started during second pregnancy and never went away but that’s probably because I was started on dopamine agonists straight away which has probably permanently damaged my dopamine receptors.

As Manerva has advised, low iron could be a factor so definitely get your full blood count test and ensure serum ferritin is above 100 and serum iron above 60. Ferrous bisglycinate ( gentle iron) is available from Holland & Barrett and is non constipating.

Magnesium may also help.

I hope you manage to get some sleep- it must be very difficult for you looking after young children while exhausted.

Emmarielee
Emmarielee in reply to Joolsg

Thank you so much. Today has been a challenge for sure. I fell asleep at 7:40am and woke up at 9am. Of course my youngest has to fight her nap today.

I'm going to request the blood test in the morning. I'm so hesitant to take prescription medications while I'm pregnant so hopefully I can manage this with iron.

I'm already taking zoloft which irritates my legs as it is. I really want to get off of that but unfortunately it doesnt seem like I'll be able to.

Joolsg
Joolsg in reply to Emmarielee

Zoloft or sertraline is an anti depressant which makes rls worse for the vast majority of people with RLS.

If you need anti depressants, Wellbutrin or Trazodone are safe alternatives so discuss with your GP. If you take it as an anti anxiety- discuss a benzodiazepine with your GP as benzos actually help alleviate the RLS.

Most doctors are unaware that anti depressants and anti histamines worsen RLS for most people.

I hope you can find meds which will help you without making your RLS worse.

Emmarielee
Emmarielee in reply to Joolsg

Thank you. I'm fortunate that my OB seems to realize that RLS is a big deal for many during pregnancy. I've tried wellbutrin before and didnt react well to it.

Prior to getting pregnant I was taking a benzodiazepine, clonazepam, which worked wonders for not just anxiety but also my rls issues. I'm going to talk to her about that when I see her today!

It sounds horrible & it must be very hard to cope. In general I thought the theory about pregnancy was the low iron stores so hope it’s that. In times past everyone was advised to take iron during pregnancy.

For everything else of course do check about safety in pregnancy including magnesium.

And of course the various antidepressants . I think if a medicine affects RLS then other meds won’t counteract it, but still iron could help.

Emmarielee
Emmarielee in reply to Alison7

It is difficult to deal with pregnant or otherwise. My heart breaks for those who have it all the time. Mine is off and on when I'm not pregnant so I get some relief from it.

As far as I know we are still advised to make sure we take a prenatal with iron but some brands make gummies and those dont have the iron in them. I tried them with my last pregnancy and just made sure to get my iron from food sources and it seemed to work until close to the end.

I did learn that with each pregnancy our iron stores are depleted and if the span between pregnancies is too short then our bodies dont have the chance to replenish our iron stores. I got pregnant about 8 months after my 2nd baby was born so I think this is an iron issue. Hoping so at least!

My 5 daughters all struggle with RLS during pregnancy to varying degrees, but thankfully it goes away as soon as they deliver. I also have it and am up off and on most nights. The only thing that helps me is Kratom, but I don’t imagine you can take that during pregnancy. Functioning on little sleep is so hard; I know! I find if I press my feet against a rubber ball at the foot of my bed it helps calm my legs. One consolation for you is that it prepares you to be up with the baby and there is an end in sight! Hope you get some sleep!

Emmarielee
Emmarielee in reply to CindyPatt

Thank you maam. Unfortunately..or maybe fortunately lol, my 1 year old is still waking up once in the middle of the night. I'm so used to waking up with her that I wake on my own just before she usually does haha.

Looking forward to this new baby girl so I can get some relief and also cuddle a new squishy baby!

Sending loveand support. I had the same during pregnancies

Horrendously difficult. You will get through it.Youve been given good advice about iron and magnesium.

Mine went after births.Then came back a few days later.Dealing with your iron could prevent this.xx

Emmarielee
Emmarielee in reply to Jumpey

Thank you! Mine usually resolves after I deliver but I do get it off and on when I'm not pregnant. This is our last baby so I'm trying to make this pregnancy go by as easy as I can!

Talking with my doctor this morning and hoping for relief!

As mentioned earlier in the comments Trazodone is a anti-depressant but also is used as a sleeping aid! This is a med I take just for that reason. So be aware that it could be dangerous for you if you receive this drug especially with another anxiety med such as the “benzodiazepines.” I feel for you I suffer with RLS and have had it for years. One added addition I have used is a mini trampoline with railing. But this may be uncomfortable for you during your pregnancy and you may fall.

Good Luck. The blood work and iron supplements I totally agree with as mentioned before. I found out that I’m extremely low in the iron and have depleted magnesium and vitamins. I have learned so much on this site and from very nice informative ppl!!!

Sandy

Hi Sandy! Thank you. I just went to the doctor yesterday and I was given a script for Trazodone, 100mg as needed at bedtime. I broke it in half and it did work! I'm so thankful to have gotten some rest. I wont take this often though because I'm really cautious with medications while pregnant.

I think that the next time I take it I'm going to do 25mg instead of 50mg just to try to have as little as possible ingested. I did still have issues with my legs but was so tired from the medication that I was able to just fall asleep shortly after.

Waiting on blood work to come back before she increases my iron. Hoping that is the issue so I dont have to take the prescription!

I feel with you! I just had my baby- 3 weeks old. I have RLS very bad for a few years now since I got off Zoloft and abilify. Some meds for depression and anxiety train your brain to require them for dopamine. They are dopamine agonists and when you get off or decrease dosage you can have terrible RLS from the lack of dopamine. My arms and legs go crazy when I’m drifting to sleep and it’s like torture to be falling asleep and woken up constantly.

With my entire pregnancy I was on mirapex 0.25 mg. My iron was checked and it’s usually normal when they check the HGB level- this is not a good indicator of iron at all by the way. My ferritin level would be a little low, but the good indicator of iron is the iron saturation level. Which is always low on me! Doctors are not trained well enough with iron levels. HGB doesn’t prove anything at all. So yes you need many tests for iron to show what’s going on.

Magnesium levels can also be checked. I used a magnesium spray and it helps with muscle cramps- charley horses- but it doesn’t work for restless leg for me at all. Because restless leg is usually a dopamine depletion and this is what causes the electric tingles and leg jumping- it’s a nerve thing not a muscle thing.

So during my pregnancy I took mirapex which they say affects the prolactin hormone. Now in rat and rabbit studies- rats require prolactin for the placenta to attach. So taking mirapex can cause the placenta to not attach in rats. Rabbits and humans do not require prolactin for placental attachment at the 6-8 week mark. Humans require prolactin for breastmilk production. I found this study on the restless leg foundation site and medical journal. So taking mirapex while pregnant didn’t affect my baby. They say it’s not recommended because of the rat study and there are no human trials or studies to show it’s safe or not.

So I was concerned about being able to breastfeed also- and so when I went into labor I did not take the mirapex for 48 hours. My OB thought maybe skipping a couple doses may be enough to allow my milk to come in. And it worked! My baby sucked in that first hour of birth and often after and he got colostrum and milk came in even after I took the mirapex again.

I do drink mothers milk tea which you can get at target- and I take goats rue supplement to help me continue to produce milk. And my son is gaining weight and healthy. There are no medical studies on breastfeeding and mirapex or other dopamine agonists unfortunately.

It’s very hard and scary to be pregnant and suffering with no sleep and torture of RLS. Sleep deprivation is no joke and affects everything. I had so much guilt taking the mirapex while pregnant and then trying to breastfeed. But I had to care for my body also to be able to grow him and care for him. Your body needs sleep. Your baby needs you to sleep and your other children need you to sleep.

Emmarielee
Emmarielee in reply to Yortarual

Congratulations on your new baby!

I just went to my doctor yesterday and sim waiting in bloodwork now. She gave me trazodone to take as needed for sleep. I took half a pill last night and I finally slept! I'm not wanting to take that for long. Hopefully my results will be back soon.

Emmarielee,

Another factor that may be worth considering is potassium.

Most of us don’t get enough potassium in our diet and it is needed for making new cells for the baby. Low levels of magnesium lead to low levels of potassium. Blood levels don’t reflect how much there is in your body as only 5% of it is there, 95% is inside cells.

I think you should check your diet and try to eat foods with a high potassium content such as a baked potato in its skin which has round 20 -25% of your daily needs. A list of some options is on here.

healthlinkbc.ca/healthy-eat...

Good luck

HiddenThis reply has been deleted
Oldcolner
Oldcolner in reply to Hidden

Hi Manerva

There are many factors involved here and it’s not as simple as you think. Plasma levels can be normal, even when cell levels are low.

Essentially and very simplistically, the cells act as a reservoir from which the blood can draw potassium in hypokalaemia, or to which potassium can go in times of hyperkalaemia thus allowing plasma levels to be normal even when the reservoir is low. When the body has sufficient, the excess can be excreted by the kidneys.

Maybe a read of this article will help show you how much can be involved.

ncbi.nlm.nih.gov/pmc/articl...

HiddenThis reply has been deleted
Oldcolner
Oldcolner in reply to Hidden

I think you are oversimplifying a complex issue.

I’m not a doctor but surely anyone with hypokalaemia needs to take potassium and a doctor would be needed to diagnose and to treat it.

The supplements are pretty useless at 99mg a tablet and one tablet is not going to make any difference.

I would prefer to suggest we ensure we have a diet that gives us the daily allowance of magnesium and potassium (as they are interlinked ) and few of us do that.

Regarding safety issues and potassium, NICE list a Potassium Citrate mixture for cystitis that contains 3g Pot Cit a dose (1g potassium approx) and suggest it is taken 3 times a day with plenty of water.

bnf.nice.org.uk/drug/citric...

There is also a 1.5g pot cit tablet

Manufacturers information sheet for the tablets here identifying who shouldn’t take it and how to take it.

cambridge-healthcare.co.uk/...

These can be bought over the counter or on line in the UK for cystitis. However they aren’t recommended in pregnancy or marketed for hypokalaemia or RLS or long term use.

Emmarielee
Emmarielee in reply to Oldcolner

Thank you for the suggestion! I'll try this as well.

Hello

Firstly Congrats on your pregnancy

& welcome.to this amazing site .We are all here for each other in our time of need

As regards suggestions I wouldnt be able to suggest anything because ive never experienced motherhood

My apologies

Sara

Emmarielee
Emmarielee in reply to Sara_2611

Thank you so much!

Sara_2611
Sara_2611 in reply to Emmarielee

youre so welcome - -if you want let us all know whether you have a boy or a girl

Emmarielee
Emmarielee in reply to Sara_2611

We found out early through a blood test for genetic abnormalities and one of the things we got to learn was gender! Baby is a healthy baby girl!

This will be my third girl and I'm really excited. Being only 18 weeks I've got a long time to go before I get to meet her though lol!

Sara_2611
Sara_2611 in reply to Emmarielee

Love to.you

I would definitely go down the iron root having had RSL most of my life and 3 pregnancies. I get constipation with tablets and my iron level was ‘normal’ at 35. Holland and Barrett iron bisglycinate and spatone liquid sachets from Tesco (natural iron from springs in Cumbria) have been a godsend. Neither cause side effects, best taken on an empty stomach an hour before bed. Do not drink milky drinks for 2 hours before or after as this stops the iron from working. My RSL has virtually disappeared now and my iron is 112 and I continue to take iron every other night. If I stop the RSL comes back. This may take 3-4 days or a few weeks to work. Be patient. Also be aware of what you eat and drink. Ice cream and diet drinks send my legs crazy. I think it’s the artificial sweeteners.

Emmarielee
Emmarielee in reply to Mum007

Thanks for the suggestions!

Cam rls due to low iron give you intense burning pain in thighs and aching and wake up feeling so hot and cannot cool down? Me right now

Just a further thought. some women suffer "secondary" RLS during pregnancy. This may be partly due to extra demand for iron. Iron deficiency anaemia can cause secondary RLS. There's also a hormone released during pregnancy Estradiol that might lead to secondary RLS.

In these cases RLS will improve after the happy event.

However, with primary RLS this is less likely to happen.

As you had RLS before pregnancy, it's likely you have primary RLS.

It's

Your RLS will hopefully improve spontaneously after but it might be a good idea to continue monitoring ferritin. It may take considerable time to improve it.

I do feel for you. I came off pregabalin (and the occasional benzodiazepine) when I found I was pregnant. (I have periodic limb movement disorder). My Obstetrician okayed high doses of magnesium and suggested Fenergen (antihistamine) to help with sleep. I realise this can exacerbate RLS but I took it when I had to as it still helped me sleep. All the best for the remainder of your pregnancy.

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