I have suffered with RLS on and off since being a teenager, I am now in my 40s. During my first pregnancy, 4 years ago, the RLS became much worse and after having my baby, I was put on Ropinerol as the RLS only continued to worsen. I have been taking 2 mg nightly which has 90% of time been effective.
I have recently discovered that I am pregnant again and have been told I MUST stop taking the Ropinerol. My GP has been great and is trying to find an alternative because as it stands, there doesn't seem to be one.
Unfortunately, without the Ropinerol, I am unable to sleep at all and am now facing the prospect of little to no sleep for the duration of the pregnancy. To top it all, I have ME/CFS which means that my body doesn't recognise sleep as being refreshing and fulfilling at the best of times.
I am sitting here at 2:30 in the morning typing this because I can not sleep and I am petrified that there is nothing I can do.
I have tried all kinds of natural remedies and none work - I don't have pain with the RLS just the uncontrollable leg thrusts.
Please, please can anyone suggest anything that might help? I am really struggling.
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sarahvs
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16 Replies
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Man you are in the thick of it!
I too have RLS and ME and it is sucking the life out of me! I cannot imagine how difficult it is for you considering you are pregnant too.
As far as I know benzodiazepines are safe in pregnancy so they might give some relief, obviously your Dr will advise that way.
Is there a dopamine precursor that is safe to take?
From the RLS Foundation Eletter just received: Pregablin in pregnancy linked to birth defects
Pregabalin (Lyrica) may be associated with increased risk of major birth defects, according to a recent study published in Neurology. Pregabalin is an alpha-2-delta medication used off-label to treat RLS and approved by the U.S. Food and Drug Administration (FDA) to treat epilepsy and other conditions. In the small observational study, scientists found higher rates of birth defects in women who took pregabalin during the first trimester of pregnancy than in those who did not take any antiseizure medications. While this finding is inconclusive, the potential higher risk means that women of childbearing age should consult with their doctors before taking pregabalin. Read the American Academy of Neurology press release.
Trying to be positive,
Did you stop Ropinorole quickly or slowly come off. Symptoms may be worse while you adapt?
In your situation you should be given priority to see a specialist, make a fuss!
Some nights are worse than others, ( you mention 90%) time to really study the triggers in food, daily routine, etc. A diary may help, I found boiled potatoes are a trigger for me!
Try all the forums, there must be advice from others in your situation.
My GP confirmed I will suffer withdrawal effects and that the guidance from numerologist a is that all medications for RLS are toxic to baby. I have been signed off for two weeks in the hope that by the end of that time I am nearing the end of withdrawal. Sigh.
When I asked Dr Buchfuhrer this question for someone on another forum his reply was, as per the guidelines, gabapentin is fine for pregnancy. Ferritin levels should be checked and iron supplementation is recommended if it is lower than 50-75.
If I can get a document from PDF into a word document ,which may help you and your gp, I shall post the link for you.
I emailed doctor B and he sent info back. However in the UK the guidelines are very strict and they won't prescribe anything.
I have been put in iron tablets to help a little and have been referred to the movement clinic in London as a matter of urgency. The concern now is whether damage has already been done.
One lady who used to be a regular on here was desperate for a baby, had been married 10 years but was heartbroken because she was unable to get off the Dopamine Agonists as her symptoms were too severe. She was on the Neupro patch not Ropinerole but both are Dopamine Agonists. In the end she got a Neurologist /Obstetrician to agree with let her continue with the Neupro patch throughout her pregnancy. The baby was absolutely fine Now I am NOT suggesting that you stay on Ropinerole but you must obviously be extremely worried that damage has been done as you have said so. am giving you a positive outcome from a similar situation. I am pleased that you are going to be getting an urgent appointment, is a to Kings College Hospital? ...Pippins2 x
Sarah, did Dr. Buchfuhrer send you a Consensus Clinical Practice Guidelines for the diagnosis and treatment of RLS/Willis-Ekbom disease during Pregnancy and Lactation in PDF form?
If not and you are interested in seeing a copy why not email Dr. Buchfuhrer for a copy? I can see no facility on this forum for me to put it here.
Just to add to Kaarina's point - I recently had my ferritin level confirmed at 69 but was put on iron tablets and it has really helped. Going from 69 to almost 100 has made a huge difference. Hope you get some relief!
So sorry Sarah, I have seen your other message to me but thought it better to reply here. You asked about the withdrawals, there is lots of information on the Web just Google Dopamine Agonists withdrawals, restless legs syndrome. I have known many pregnant ladies take Gabapentin and painkillers such as Codeine once past the 3 month pregnancy mark. Some doctors will prescribe, some won't as it a case of weighing up the risks of the meds as opposed to you getting some sleep. Are you in the UK? If so maybe your GP could email Doctor Chauduri at Kings College Hospital in London for advice. Hopefully Kaarina will find the link for you. You can email Dr Buchfuhrer and he always replies free of charge. Go to rlshelp.org and you will see where to email. He is an internationalRLS expert so maybe your GP will take notice . It sounds like your G is doing his best to help, let us know what he comes up with. I will send you a private message too c
So many helpful replies for you Sarah, so I will just wish you well, and that you can get some sleep. I had to come off drugs completely whilst going through IVF and then when that was finally successful, no drugs whilst pregnant! People used to say that maybe, just maybe, pregnancy would 'cure' the RLS, but alas it didn't! Take care, and good luck xx
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