Pregnant and suffering RLS: I've self... - Restless Legs Syn...

Restless Legs Syndrome

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Pregnant and suffering RLS

Nikkig profile image
10 Replies

I've self diagnosed this but will be seeing both dr and midwife. I also have fibromyalgia which has flared up. How do u cope with RLS, it's absolutely killing me. I am so tired. It wakes me up on average 3-4 nights per week, my partner has to sleep in the spare room as my leg twitches and moves, it's like I'm having a fit. It's so uncomfortable and being pregnant I can't take any medication. I've tried hot baths, cold water, heat and ice packs and nothing works! I'm going out of my mind!!! It's the worst feeling ever and I don't know what to do about it!!! Any help or advice is much appreciated

Thanks nik

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Nikkig profile image
Nikkig
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10 Replies
Tpebop profile image
Tpebop

Hi Nik. You need to go to your GP. They should sort you out. Often RLS is linked to sleep disorders so, if you are lucky to have one near you, you may get referred to a sleep disorder centre, who will test, advise you and co-ordinate matters with your GP, who should prescribe treatment suitable for a pregnant woman. Even if the RLS is not sleep problem related, your GP should be able to help in some way. As you have learnt from reading this site, treatment for RLS is not always easy but it is possible and by trial and error you should be able to treat it and live a normal-ish life afterwards. Best of luck to you all.

Sarasneakers profile image
Sarasneakers

Hiya, is this your first pregnancy? I have a 3 year old daughter and had RLS when I was pregnant. I now have it again but I'm not pregnant but mine is related to genetics and a history of sleep disorder.

Anyway, when I was pregnant I made sure I drank 2.5 litres of water (at least) every day and when I used to wake up (which I did frequently during pregnancy - everyone does) I used to eat bananas for extra magnesium. I also used ferrograd c iron tablets but I have a tolerance to them from a long history of iron deficiency so check they would be suitable with your GP before trying them. If I were you I would eat extra magnesium and iron rich foods and drink plenty of water. Good thing is if it's purely pregnancy related it will stop when you have your baby!

Love from Sara x

Rish profile image
Rish

Hi when I was pregnant I had RLS already and I was taking mirapexin tablets not knowing how dangerous they were to a unborn child when I found out it was to late and I lost my little one so after a year of me trying to get of the tablets I could not do it I was going out of my mind so until they find a safe way I can not have children which breaks my heart , my RLS is really bad. I hope you find help and please let me know if something helps , stay safe lv Rish x

Nikkig profile image
Nikkig

Thank you every one for your comments. I've made an appointment to see me gp so fingers crossed its a start and hopefully will find something that will help

xshakx profile image
xshakx

hi there ,i hope u can get something sorted wit ur GP ,

mine is amazing wit everything but this time wen been to see her wit this prob whilst pregnant she is unable to help :((( i find the more exersise/moving around during the day i do,the better i feel wen go to bed!!! good luck and post how u get on!!!!

When pregnant, its not safe to take any medication for RLS, the only thing you can do is the usual non prescrip stuff, hot baths, stretching your legs, etc.

i am sorry that all you have tried hasnt worked for you.

nightdancer profile image
nightdancer

HI, so sorry you are going through this! I feel really helpless when talking to women who get RLS when they are pregnant. True, there are a ton of meds, all the ones approved for RLS included that you cannot take. RlS is so weird with pregnancies. My niece never had RLS until she was pregnant with her first child. She went nuts, as soon as the baby was born her RLS "disappeared". With her 2nd child, no RLS at all. But, now that the 2nd child is 5, the RLS has come back with a vengeance.

I have Fibro, too, and women with Fibro are 13 times more likely to develop RLS.

One thing my niece did when her legs were driving her crazy, was lay on the bed facing the wall, so she could press her legs up against the wall. The pressure helped relieve it, albeit temporarily. Since you are pregnant, you are most likely already taking Folic Acid and magnesium. If you are not taking magnesium, ask your doctor about taking some of that. It does help some people, plus check and see if your doctor has run a Ferritin level (how your body stores iron). With pregnancy mixed up in it, I am not sure what the level should be, but for RLSer's they like the level to be 50 or higher. But, that blood test needs to run, and I suspect your doctor probably ran that. Ask, and see if he has had a Ferritin level done. It is different than being anemic, because it is how your body stores the iron that counts when RLS is involved. Keep us posted! :o)

rlshelp.org is a great web site; go to the treatment page.

Sarasneakers profile image
Sarasneakers

I am especially interested in theist comment about ferritin level tests, I know I am severely anaemic and my iron levels are always 'ok' according the doctors but I had no idea that they like levels to be higher for RLS sufferers and that a ferritin level test hasn't been done (in my memory). I am going to be trying for a baby again at the end of the year and have already reduced from 1.25mg ropinirole to 0.25mg ropinirole mixed with 0.88mg pramipexole and trying to stay at the lowest level of both so it's not too hellish when I start trying for another baby. It was horrific when I gradually reduced and I've started to have terrible RLS and insomnia as a result but no augmentation or impulse control issues at present so utterly worth it. The RLS drugs are nasty and I almost wih I had never started them. Will def go back to my GP about the ferritin thing. Thanks xxx

Tiredparent profile image
TiredparentRestless Leg Syndrome

Hi there. I really struggled thro pregnancy but to be honest, I also had problems while breast feeding afterwards. Sitting for long periods with RL in my elbows or legs was really tough.

For me, the key to RL is prevention! Once RL has come on, it is hard to get rid of.

- In my experience, it is the lack of movement (eg, in bed, watching TV, car journeys etc) which brings it on. It is less likely to come on if the environment and my clothes are cooler but it can’t be avoided completely. So, try to avoid sitting for long periods of time as that will almost certainly bring it on. Regularly get up and move around – even if just to go to the loo or make a cup of tea.

- Keep your bedroom cool and make sure your bedding is made of natural fibres. I’ve found the best for me is a cotton sheet, a white cotton waffle blanket (John Lewis) and if I get cold, a wool blanket.

- Try to keep your knees cool in the evening – even before bed. I wear loose fitting cotton pyjama trousers at home and even whip them off if I can feel my knees getting warm! I have some non-fleecy ones from Boden online which are very good.

- Try to have some exercise every day – even if it is a gentle walk to the shops or some housework. If I haven’t done this, my RL always is much worse. But don’t exercise too close to bed time as it makes the RL worse!

- Make sure you eat enough iron rich foods. Iron is hard for the body to absorb so the best way is to eat red meat a couple of times a week and preferably with a glass of juice as the vitamin C helps the body to absorb the iron.

Hope that helps. Good luck - I do feel for you.

Rosie

Fidgetygirl profile image
Fidgetygirl

Hey all

I've been reading your comments with great interest as I am pg with my second baby and my RLS has been unbearable at night, especially with the hot weather this last week or so. I've had a couple of nights with very little sleep indeed, typical since my 19 month old has finally decided to start sleeping through.

I've always suffered a bit but it was much worse when I was pg with my first and it didn't really get better until after I stopped breast feeding. I used to feed and fidget!

I have found one (slightly random) thing that helps and I guess useful if you've a little one on the way - knitting! I appreciate you can't sit and knit all night but in the evenings it makes the difference between me being able to sit still or not. I assume it's because my brain is busy concentrating on not dropping stitches!

It's interesting to read about the Ferritin levels, I am going to get mine checked as I ended up on iron last time and seem to vaguely recall that my RLS wasn't as bad after that.

Thanks all!

xx

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