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5 years with RLS and now pregnant

Posted: Tue Feb 07, 2017 3:25 am
by Kluck
Hi everyone,

Reaching out for some help or suggestions.

I started having RLS symptoms about 4-5 years ago. The first year was mostly in the summer and although I was miserable I made it through without medication (the only thing that somewhat helped was icepacks). About 6-8 months later it got worse, so that it was bothering me every night and any time I tried to nap. I finally went to the doctor who prescribed requip. That worked pretty well for a while, unfortunately my primary care doctor didn't know a whole lot about RLS so he just kept increase my dose saying that if I was still having symptoms I needed to be on a higher dose.

About a year ago I hit my lowest point. I had full augmentation and was experiencing it in both my legs, both my arms and my chest every night. I was sleeping 2-3 hours a night and honestly considered checking myself into the hospital/psych ward a few times. Finally I went and saw a new sleep specialist. She tapered me to a much lower dose of the requip and but me on ambien (which I really dislike). We also found out that my ferratin was really low, I had been tested multiple times for low iron but never low ferratin. I had 5 iron infusions and was able to stop taking ambien and stick with the lower dose of requip.

So the last couple of months have been good. But now I am pregnant and my doctors have told me that I need to stop taking the requip. I saw the gyno/onc doctor today who told me to "suck it up". Obviously she doesn't get it. I have tried every home remedy imaginable with no luck. Unfortunately they do not want to put me on methadone because I have a history of addiction.

I am feeling pretty frustrated and fearful that things are going to get a lot worse. Any suggestions would be helpful!

Re: 5 years with RLS and now pregnant

Posted: Tue Feb 07, 2017 3:43 am
by Rustsmith
Hopefully you will receive suggestions from those who know more about this topic that I do. But here are a few suggestions of things for you to consider:

1. There is a book titled "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. It costs about $25 of Amazon and there are several areas that deal with treating RLS during pregnancy. The book was written for doctors, but is easily understood.
2. Take a look at the list of the RLS Foundation's Quality Care Centers on their website. It can be difficult to quickly get an appointment with one of them, but would be well worth investigating since these are the real experts in treating RLS.
3. The RLS Foundation has a document titled "Pregnancy and RLS". You need to be a member to gain access to this document, but annual membership costs $25. You might also consider calling the Foundation office to see if they can direct you to an RLS specialist in your area who is familiar with treating RLS patients who become pregnant.

Re: 5 years with RLS and now pregnant

Posted: Tue Feb 07, 2017 8:27 am
by badnights
Kluck - I do not envy you! I do have enough experience with this disease to know that you will be doing your baby and yourself harm if you attempt to just "suck it up". (And you know this in your heart of hearts already). You need to move heaven and earth, if necessary, to get informed medical care.

You can't stay on ropinirole/Requip, and the only medications that are safe during pregnancy - I think - are methadone and suboxone. There are ways to do this, despite a history of addiction, which does not in itself doom you. So you need a doctor who will work with you.

Is there an RLS Qualtiy Care Center anywhere near you? It would be worth a few trips to get proper care. A sleepless mom will produce an unhealthy baby, plus mom will be a basketcase... I am not being of much help to you, but I do want to convince you of one thing: you do need to get informed care. It's essential, despite what ill-informed people presume in their ignorance. Oh, and a second thing: you CAN do it. It's not an impossible task. Fight for this! Start by looking for QCC's near you, then check the in General RLS/WED for the Topic called Who is Your Favorite Doctor. If you want to share where you live, you can post that and ask if anyone knows of a good WED/RLS doc near you.

Re: 5 years with RLS and now pregnant

Posted: Tue Feb 07, 2017 8:48 pm
by legsbestill
It would be well worth getting the book Steve mentions. If nothing else, you can show it to your medical care providers and it will illustrate how serious you are about this condition. I would also second Beth's suggestions and reaffirm that you CAN do it. It might be worth emailing Dr Buchfuhrer to see what he has to say. How are your iron levels at the moment? I seem to remember that it is ok to take iron while pregnant (though obviously check this with your health care providers). Also, have you looked at the Relaxis pad? Unfortunately it is quite expensive and I'm not sure whether it is counter-indicated in pregnancy but it is certainly non-invasive.

I had untreated rls during my pregnancies and it is pretty miserable. Beth is correct when she says that being sleep deprived will not benefit Mother or baby and it is worth fighting for optimal treatment but don't panic either - it is also worth bearing in mind that healthy, happy babies are born to sleep deprived mothers all the time - unfortunately pregnancy can be an uncomfortable condition and often substantially interferes with sleep even if there are no rls symptoms present. I had a friend who in the later stages of her pregnancy with twins could only sleep when she was lying in a bath (with water in) and I doubt her sleep would have been particularly restful in those circumstances. Her boys are healthy teenagers now. So do not despair; try to feel positive (a big ask - I know); everything will be ok.

Re: 5 years with RLS and now pregnant

Posted: Tue Feb 07, 2017 10:37 pm
by ViewsAskew
I'd try to decide what you can deal with. We have had moms here who indeed could suck it up and believed it was their best option. We have had other moms that felt their best option was to be medicated. There are pros and cons to each and ultimately only YOU know what you can handle and what is best for you.

There is an excellent thread here from a mom who went through this and decided to get methadone. She documented every decision, her interactions with doctors, etc. It might be great reading to help you decide if medication is right for you and how you might go about it.

Re: 5 years with RLS and now pregnant

Posted: Wed Feb 08, 2017 8:34 am
by badnights
legsbe - thanks for gently correcting me. I said "sleepless mom will produce an unhealthy baby" and you pointed out, correctly, that that is not necessarily true. I was in full-steam-ahead anger mode at what Kluck and others have to endure and got carried away. Kluck, I hope you took that negative assertion with a grain of salt.

Re: 5 years with RLS and now pregnant

Posted: Wed Feb 08, 2017 6:10 pm
by legsbestill
I totally understood what you were saying and why - I wholeheartedly share your anger at a medic who would offer nothing more than 'suck it up' as though that was in any way the whole picture. I'm sure so did Kluck. There was no intention to correct you. I well remember how readily I latched on to any reason to beat myself up when I was in that interesting condition however - I was only seeking to reassure; not to water down your point which is a very important one.

Re: 5 years with RLS and now pregnant

Posted: Fri Jul 14, 2017 4:02 pm
by Felinefine
I have found that sleeping in the tub with lukewarm water is sometimes the only way to get enough relief from my symptoms to relax. Sometimes,I can be in the tub for an hour and then move to the bed with success. Other times, I'm in the bath all night. Better than nothing!

Re: 5 years with RLS and now pregnant

Posted: Fri Jul 14, 2017 7:09 pm
by Polar Bear
I'm glad that you've found this to work - anything that works is a bonus :)