4th night in a row with no sleep!!! - Restless Legs Syn...

Restless Legs Syndrome

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4th night in a row with no sleep!!!

maisie123 profile image
48 Replies

I'm 30 weeks pregnant today and this is the 4th night in a row i have been sat up with twitchy legs! I don't know how much longer i can cope with this little sleep. My poor baby girls are putting up with a grumpy mum during the day and i am terrified i will never b normal again! i'm 33 crying every night and feel like calling my mum how pathetic!!!!!!!!!!!!!!!!! I have tried everything I'm allowed to do and am at my wits end!!!

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maisie123 profile image
maisie123
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48 Replies
nightdancer profile image
nightdancer

I am sooo sorry. :( I think the women who are pregnant have it the worst, because there is only so much you can do. did you have RLS during your other pregnancies, or in between them? I wish I could wave a magic wand.

nightdancer profile image
nightdancer

My poor niece had the same problem with her first pregnancy, but not the 2nd. How weird is that? Hopefully your RLS will lessen after you give birth?

maisie123 profile image
maisie123

I had it with my other two but seems to have got worse with each one, this will def be the last baby!!!!!!!!!!!! I can not cope with this again!

nightdancer profile image
nightdancer

Take one minute at a tine when it is this bad. :( Do you have ot 24/7 or just in the evening and night which is the worst anyway, especially when you are craving sleep.

Sorry to hear this..

Can you sleep at all during the day?

I sure have you close in my prayers.

Karen ~USA

Rish profile image
Rish

Hi I sort of know how you feel as when I was pregnant I found it very difficult to come off the tablets It was a surprise to find out I was pregnant and having RLS since young I tried to come off the tablets it was torture I cried and cried even tried to sleep in the bath just to settle my legs anyway complications happened and a loss .

Me and my husband would love a family but I can not cope I have tried so hard and it's so heart breaking I wish I could take the twitchy legs off you to give you rest ! Hope you get some rest soon Hun x

Rish profile image
Rish

I did find that laying on my side with my feet raised would help a little and a fan on my legs keeping them cool or a warm bath! I really feel it for you and wish I could help x

Kolla profile image
Kolla

Dear Maisy

You have all my sympathy.

When you have been so long without sleep, you just have to relax. when I have been in this situation I try what I can. It is usually into bed or my chair , listen to an audiobook even if I do not sleep I relax. Then again I do not have young children to look after.

You mentioned your mother, can she or a friend come over for a couple of hours a day so that you can rest?

I find that it helps to talk to a friend on the phone about how you are feeling. This friend must. have an understanding of your condition, then you do not have to explain.

Back to bed

Kolla

jumpylegs profile image
jumpylegs

I am nearly sure that I've read about pregnant mothers being treated successfully by using methadone. This may have been in the US but I know it has been done with successful and healthy babies.

bb.rls.org/index.php?sid=8a...

This is a link to the Discussion Board of the RLS Foundation based in the US, perhaps a search on this Board would provide some information.

Ruggerroy profile image
Ruggerroy

I don't know whether it will help you, (being pregnant, where your mobility is restricted), but when I have really bad spells of RLS, I find certain exercises stretch and tire my leg muscles to such an extent that I can go to sleep quite easily, and these might well help many of you who reach desperation in the night.

The first involves squatting on one's haunches, by all means steadying your balance with one or both hands. Then, raise yourself 6 to 8 inches using just your calf and thigh muscles, and then lowering yourself back down. I have been using these techniques for some time now so I have to admit I need to do this well over 100 times.

I follow this with bending over and touching my toes, lifting my hands 6 to 8 inches, and then down again. As with the previous routine, I have to do this over 100 times, and follow this exercise by repeating the first squatting routine another 100 times or more. Obviously, I wouldn't recommend the toe touching exercise for pregnant ladies, even if it was possible, but for the otherwise able bodied you could try the sequence.

The whole procedure takes no more than ten minutes or so, and sufficient exercises of each should be done to leave the legs muscles aching with discomfort. That disappears in seconds and my legs then relax so that I can sleep.

You might think that this routine would only be possible for the young and fit, but I do 140 of each of these three exercises in less than ten minutes and get immediate relief from my restless legs. I am 73 and rapidly approaching my 74th birthday. You too could do it.

cumoneileen profile image
cumoneileen

I to started having RLS when i was pregnant with my first child, they said baby was lying on a nerve and when i gave birth it would cease!!!!! my daughter is now 48 and i still have RLS its got worse as i got older.If you cannot take tablets,as soon as you feel your RLS starting up get up and walk around,up and down stairs is a good one.

After a while it will subside and hopefully you can get back into bed and fall exhaustively back to sleep.My legs are jumping as Iam writing, I am off to take my ropinirole so i can watch eastenders in peace. cumoneileen.

nightdancer profile image
nightdancer

One thihng I did was lay on my bed, and push my legs up against the wall as hard as I could. It helped for a while. hugs for today!

in reply tonightdancer

i used to do that when i was expecting my daughter lol did work for a while plus i used put my whole calf against the wall just the cold from the wall use to help too ,

good one nightdancer :) hope she reads that one

Grumpyjumpy profile image
Grumpyjumpy

I must respectfully disagree, nightdancer. In the spirit of this site and its request that we are helpful, I must share my opinion. Of course, it's just an opinion as nightdancers is. I've gotten nothing but excellent information from it, from very caring and helpful people. I prefer it because they seem to promote the truth - by that I mean they quote science and books and research articles instead. We all have opinions, but opinions aren't fact. They tend to stick to what seems to be fact to me. It makes me feel safe there. I trust it more than any RLS site and I read many.

nightdancer profile image
nightdancer in reply toGrumpyjumpy

I quote the truth every day, and I stand by my statements. I did not say I use the discussion board daily. By the way , which moderator are you? I know there are 3 or 4. anyway, that does not matter. I said I stand by my statement, and I mean it. I have had several communications with a board member of yours, and I have emailed the US RLSF several times in regards to the dead links in the news section for years. I keep being told that the dead or outdated links will be removed, but so far no. It is too confusing for people to have to sign into a web site, then have to sign in separately for a discussion board, and that is just me. I hand out web sites, studies daily. what I type is not only my opinions, but what I KNOW to be true, and nasythin I say can be backed up. If the discussion board is helpful to you, that is great. I ahve msgs every week about the US web site, so that is a reflection of my comments. I don't make this stuff up. I will give you this. The discussion board is better than it was. 2 or 3 yrs ago, I checked it out and have done so every once in a while for 1o yrs or so. Two times when I logged in, the discussison was about soap operas. Really?? never would be allowed iun my groups, just sayin.......... In the end we all get our information from the people and web sites we trust the most, and for me that is Dr. Buchfuhrer's web site, who is a medical advisor to the RLSF board ( but I am sure you know that). His web site is the easiest to navigate, treatment page is golden and the list of Drugs and Foods to Avoid is very comprehensive. By the way, I ordered some of the last RLS T SHIRTS before they disappear and all you are selling is WED stuff. Do you wonder why the Britich RLS-UK will not use the new name? WED? Read their web site. I have my opinion and you have yours.

Grumpyjumpy profile image
Grumpyjumpy in reply tonightdancer

I am not a moderator but a long-time reader. I used to post regularly on a now-defunct board and stopped posting on most boards a long time ago. I used to read all of them; now just read the Foundation's forum. It's laid out well, is easy to navigate and I have no difficulty with it. Never have.

You weren't clear that you dealt with the foundation when you posted above. The original post was about a post on their discussion board and the inference in your post is that the board is useless, not the Foundation. You don't mention the Foundation. Thank you for clearing that up. It's hard to be clear sometimes.

I have no dealings with the Foundation. I support them as I hope all of us do. I would be annoyed by dead links, I suppose, if they did not fix them. Me personally? I would not post about it. I am concerned that talking about them thusly on an open forum doesn't help any of us. We need people to support them as they are the only group out there that helps all of us.

in reply toGrumpyjumpy

hi, you say we need groups that support us ?? the foundation have said themselves on previous occasions that they are NOT a support group.

I have looked on there in the past, and made comments, but they do make it very clear themselves, that its for advice and not support

in reply to

You are absolutely right Keeley, they have always said there fb page is not for support but for just advise... I post to give advise and support on that page almost everyday. They dont even say support in there title....The RLS.UK does have that in their title..

Grumpyjumpy profile image
Grumpyjumpy in reply to

By support, I mean in a larger way - the big picture. There are many of these small support groups. If I recall correctly, the Foundation does have support groups. I believe their Facebook page is not a support group. They cannot moderator that adequately.

Groups like these, and the Foundation has one, too, are extremely important. They do not, however, influence doctors and policy. The Foundation is the only organization giving grants, informing doctors, etc. That is extraordinarily important. We can, ourselves support each other. We can't do what they do.

nightdancer profile image
nightdancer in reply toGrumpyjumpy

BY support , you mean donations, etc. Do not belittle this group or any other that I belong to. I have been doing this since 1997 in my yahhooo groups,. NONE of which are connected to the US RLSF, because of ridiculous rules. I do NOT ask people for meoney and that was one of the requirements if I was to be listed in the Nightwalkers newsletter any more. don't need them. My groups are listed all over the place. Now, like I said before take this subject off this thread. You are breaking an etiqutee rule, which you should know about. And, what group doe sthe Foundaion have besides the msgs board?? Certainly none of mine!!! Really, take this subject to a different area fo tis site, becaus this poor woman may never write back. If you wnat to go at it, we can go at it, but NOT HERE. IN private! And, this is an RLS web site, directly connected to the RLS-UK. I would not be having that attitude on a UK Foundation related web site. This group is part of the UK Foundation. If you don't like tis group, go back to your own. I have had it. And, it is an RLS group,. NOT a WED group. REad their web site. Ths is te last time I will put this out inpublic, but have some respect for a group where you do not know anyone, exceot you other RLSF member from the US jumpy;legs. I aplogize to ALL for this post. It has been a long time in coming. But, do NOT insult this group ever. and, I mean it when I say take it to a private discussion or at least get OFF this thread. Thank you.

in reply toGrumpyjumpy

I begger to differ on the Foundation being the only group out there that helps us all.

Whats this group for then.....!!!

Grumpyjumpy profile image
Grumpyjumpy in reply to

See my post above. It's about the bigger picture of getting money for our cause, funding research, being taken seriously. That is the type of support I mean.

nightdancer profile image
nightdancer in reply toGrumpyjumpy

and this is why we like sites this one, so we do not have toread about how money is needed all the time. If we wnat that we can go to the web site or the Facebook page. and, why is the word "support" NOT in the US RLSF's mission statement? That is obvious.

jumpylegs profile image
jumpylegs

Nightdancer, I know you are fully involved with RLS and RLS Sites and give generously of your time and experience however I feel I must say that I am very disappointed in your sweeping statement that the RLS Foundation Discussion Board is useless. Everyone involved in such a site wishes to be as helpful as possible and in particular the volunteer moderators. As a long term member of the Foundation Discussion Board my gratitude goes out to them every day for their information - official research articles and recommendations. Often going beyond what could be reasonable expected in order to explain information so that the 'ordinary man' can make sense of it. You quickly denegrated the RLS Foundation Site without any regard as to whether or not it may or may not provide the information about methadone treatment in pregnancy as suggested by myself. .

You have mentioned that you deal with the RLS Foundation Discussion Board on a daily basis. I am also on the site and I haven't noticed you there.

I am sorry that you felt strongly enough to state that the RLS Foundation Discussion Board is useless.

in reply tojumpylegs

I think you will find that nightdancer means she deals with the RLS Foundation rather than meaning the discussion board.... She was just voicing her opinion, just as we all do on here....

I find for getting the answers i want about RLS, is by going to rlshelp.org that has a doctor who specialises in RLS. He can be emailed about anything to do with RLS and medications.. I find that is one of the best websites for answers.

in reply to

hear hear on this site Elisse mentioned is the best to be on for info ..... Maisie :) you'll find everything you neeed to know if not then email them they'll get back to ,

:)

in reply to

now that is support !!

nightdancer profile image
nightdancer in reply tojumpylegs

Elisse-below- is right. I NEVER said I use the discussion board daily. I said the web site. again, she lists the best web site, and ai am sorry that angers you, but it is true. For new RLSer's, that site is the best site to send people to for EASY TO FIND information. I have been very vocal over the years, as you know, since you are a member of the US RLSF obviously, about the lack of "ease of use" for the US web site. t is getting better, but it still scrambles my brain. and a LOT of others , too. Not only me that feels this way, TRUST ME.

CathyS profile image
CathyS

Hi Maisie - I soaked in the tub for a good portion of every night during my first pregnancy when RLS invaded my life. It did help some then and with the next two also. You have my sympathy - it is so tough - but also very worth it! Best of luck to you ~

hi maisie

not sure how big you are but when i was expecting i used to hold my legs up in the air hold my ankle and pull next to doing what Nightdancer already said bout pushing against the wall it worked for a while next to having hot baths ,

hope you find something that works for you all trail and error im afraid no one has the right answer but we all have our own ways

:) good luck hope the rest of your term goes well

nightdancer profile image
nightdancer

I meant to say I DEAL with the RLSF which will be the WEDF soon, which is a big problem,. Read the British RLS-UK web site. I deal with the foundation in one way or the other every day, and that is the truth. The facebook page was made "not to be a support group" and that is a direct quote from a board member. Well, it has become one, because I and many others actually answer other's questions every day. I hate when I go to the FB page and see some desperate person looking for help, and their questions just hangs out there for 24 hrs or longer most of the time. But, I will drop this, as is this is NOT the thread for this!! We are talking about prgenancy and RLS. If you have anything else to say to me, send me a private msg and be honest enough to tell me if you are a board member, or a moderator on that site. You know who I am, that is obvious, and I do not hide my identity ever.

Donna/USA/ Yahoo support groups/ rlsrebel.com

Good coping ideas here from Jill Gunzel, may she rest in peace. It comforts me to think that there is no RLS or cancer in heaven. I know I am not in the mood for this with Jill's death and I am crushed, so my nerves are frazzled. take this discusssion to private msgs. please.

jumpylegs profile image
jumpylegs in reply tonightdancer

Yes, I am a moderator on the Foundation Discussion Board. I suggested that discussion board site for a search issue because I hoped there would be relevant helpful information, and I received a response to say that the Discussion Board was useless.

I then made a further post to say that I thought that 'useless' was a very sweeping statement.

With regard to the matter of 'soap operas being discussed' may I say that the Foundation Discussion Board has several forums according to the type of issue being discussed, and one of these forums is for '''Everything Else... just no WED/RLS'' hence the talk there could well be of movies, holidays. etc. etc.

Also, the Foundation Discussion Board has nothing to do with the operation of the Face Book Page.

maisie123... May I apologise to you. I was trying to provide a source of information which may have helped you and unfortunately my suggested source became a target. I am sorry that it interfered with your thread. You are already distressed from your symptoms and lack of sleep and did not need your thread to divert as it has done. I wish you a healthy pregancy and as much peace and comfort as iis possible.

I agree that rlshelp.org and Dr Buchfurer is wonderful source of incredible and trustworthy information. Any time I have contacted him he has responded more speedily that you would think possible.

I have not taken this to private messages for discussion because I'd like to think that the matter can just be put to rest.and a case of least said, soonest mended.

Yes, I would like to think that there is no RLS and no cancer in heaven and I am sorry for your loss in the sad death of your friend Jill.

nightdancer profile image
nightdancer in reply tojumpylegs

discussion over,.

Jumpylegs, i would just like to say, that WED is not used by the RLS.UK and never will, the name RLS is what is used this side of the pond. Thank you....

nightdancer profile image
nightdancer in reply to

RLS is called RLS on this web site and every British web site. Please respect that fact. Non one knows what that is, and they don;t have to because until every medical cmmunity accepts the SAME name..........it will be a b igger joke than it was before. oh, another blog!:)

back in a few.

Hi Maisie, did you ever try one of those exercise balls, i have heard that they are helpfull, when your legs play up, you can sit and rock on it, helps to keep the weight of you feet maybe, just a thought, and hope your soon feeling better Maisie :D

nightdancer profile image
nightdancer in reply to

Have one of those exercise balls,too, and it is REALLY a help. I sit on it and bounce up and down just enough to keep my legs occupied. I do it when I am watching TV in the evening, and usually at 3 a.m. ugh. But, it helps. You don;t have to bounce hard at all, just enoough to keep the legs moving. Have not figured out how to use it for my arms yet. I tried it, and ended up on my face! :)

nightdancer profile image
nightdancer

I asked this to be taken off board privately, but she would not listen. The "discussion over" comment is for her, and I am sorry that this happened on this thread.

nightdancer profile image
nightdancer

and, they do read it. Let's not forget that this group is directly connected to the RLS-UK Foundation, so this is not just any "little group". (directed at someone else not you) I agree and just did some private msgs. And, apology to Maisie!

Rish profile image
Rish

Hoping you are ok Maisie as you have not been on for a few days x

maisie123 profile image
maisie123

After my four bad night I had two good nights and feel much more refreshed!! Had a bit of a rubbish night last night so i'm hoping its not the start of another bad run! My eldest daughter was off sick yesterday and i tried to snuggle up with the duvet in front of the telly, i lasted 10 mins before i started!!!! i am going to get an exercise ball, it helps with general pregnancy discomfort anyway and I'm so fed up with my sofa!!!!! 9 weeks left and baby is due, at least i'm into single figures, i just keep reminding myself this baby needs more time to grow strong and how far i have come compared to what's left - keep your fingers crossed for me tonight xxxx

Fingers crossed for you Masie, hope it was a good night. :)

maisie123 profile image
maisie123

Terrible night, finally got to sleep aout 3am! kids up at 6.30!!!!!!!!!!!!!! walking zombie today xxxxxxxx

nightdancer profile image
nightdancer

Maisie, I found a great web site with a good commimity on it for pregnacy only and all the issues. They are quite extensive on all sleep problems during prenancy, and they have a an excellent RLS section. There is also a msg board where you can talk to other pregnant ladies. Looks like they are VERY supportive to each other.

babycenter.com spell out RLS in the search, and you will get a ton of stuff. Hope this helps!!

;)

insomnia2 profile image
insomnia2

Ask your doctor about Ropinerole, don't know if you would be able to take it being pregnant but it has worked wonders for me.

Kolla profile image
Kolla

You have all my sympathy

In my old days I come as far as on to the 5th . The funny thing was that I was not tired only short sleep and tierdness.

No sleeping pills have been able to put my RLS to sleep.

I walk about, listen to audiobooks, knit and crotchet as well as play with my iPad.

I used to bake bread and eat it ,put on a lot of weight

But you have it worse

Kollagunn

landman profile image
landman

Best not to fight insomnia. Try eating some nuts before bedtime or a banana. Also I have had success with prayer. Every night before I go to sleep and every morning when I awake, I tell GOD what I am grateful for. I prey all day long. The Lords prayer. I average 4 to 5 hours a day of sleep. GOD bless & happy dreams.

Amelanchier profile image
Amelanchier

Hi Maisie,

I’m so sorry to hear how badly you are suffering and I remember my restless legs being particular bad during my last pregnancy too, even tho it was a very long time ago! I remember being downstairs night after night crying into my knitting with which I was desperately trying to distract myself. It feels as if it will never end but take heart, you will get through this.

RLS is known to be quite common in pregnancy, as is anaemia so make sure your iron and ferritin levels are being checked by your GP and corrected if necessary, as this may help control your symptoms.

All the best to you and the new arrival!

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