Hi, I’m new to this forum but fascinated by the helpful and constructive support and replies from people so I’m hoping for a bit of advice please… seem opposite to the somewhat aggressive FB group!
Classic story - I was diagnosed with RLS in May 2020 by a GP who had to go away to do research when I told them I thought I had RLS… they put me on Ropinerole - 0.25mg moving to 0.5 max - never mentioned about augmentation. Was great to start but 2 years on I’m augmenting but I won’t up my dose. Last year I reached out to see a specialist - was sent to see someone at Kings in London who said my bloods all looked ok.
I’m now 12 weeks pregnant and had 2 conversations with them since about taking Rop - they say the benefits outweigh the risks at this stage for me and so recommended I carry on taking Rop - but I just don’t feel 100% given ALL the info and chat I read about this NOT being recommended for pregnancy or breast feeding. For a while in early pregnancy my legs got a bit better, but at 10 weeks they’re worse and coupled with insomnia I’m waking most days now 4/5/6am and have to get up. It’s grinding me down now.
I’m off caffeine and alcohol obviously, plus have a healthy balanced diet and am swimming 3-4 times a week and walking. I’ve tried acupuncture and have regular Epsom salt baths. Whilst this has helped a bit nothing has materially alleviated my symptoms, which occur every night and now sadly in the morning c5/6am in the last 6 months.
I’d welcome any advice please to help me go back with some challenges to this current approach. Sorry for the long post! Thanks
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Personally I would get of it. It would be one thing if it were controlling your symptoms, buy iy isn't so I see no benefit to staying on it especially since there is a risk to your baby. However it is going to be hard since RLS increases during pregnancy anyway. First off, they said your bloods were all OK, but did they test your ferritin which is not usually tested and even when it is, the doctors will say it is OK not realizing that what is OK for others is not OK for people with RLS. So ask your doctor what your ferritin and transferrin saturation (TSAT) was. Your ferritin needs to be over 100 and your transferrin between 20% and 45% . Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If your ferritin was not tested, when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your transferrin saturation is not between 20% and 45% or your ferritin is not over 100. Post them here and we can give you advice.
thank you so much for this info Sue - all massively helpful and reinforces my thoughts. I’m writing this as I lay in a bath of Epsom salts after waking at 1am then 4:30am - The latter being too much to stay in bed despite the fact My mins wanted to sleep but not my legs. It’s a form of torture. I have some bloods already - I’ll share those but have asked for an updated full set now I’m pregnant and a review and new plan to get off these asap. I’m already down from 5 months ago from 2x 0.25mg tablets a night to x1 and in the last week have been only taking 1/2 a tablet 1.5 hours before bed. Hence the very early starts now as they seem to have warn off by 4am.
You are close to what you want since you want your ferritin to be over 100. Take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time but no closer than 24 hours since that decreases its absorption, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you have problems with constipation switch to iron bisglycinate. If you can get an iron infusion since iron isn't absorbed as well above 75 that would increase your ferritin faster. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Tell your doctor that you don't want to risk hurting your baby by staying on ropinirole and you want to come off it. It is your choice not your doctor's. To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer especially as you near the end. But in the long run, you will be glad you came off it for your baby's sake. And yes you will continue to have symptoms during your pregnancy since you can't take any medicine, although If you are planning on breast feeding, taking gabapentin or pregabalin which are now the first line treatment for RLS are probably safe. When you get there post again and we can give you advice on how to take it.
Some things that can make RLS symptoms worse for some people are sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
thanks again for these - I’ve tried most - been off alcohol and caffeine for c5 months, reduced intake of refined sugar as much as possible and limit carbs but I haven’t seen a huge benefit (although I know alcohol was my worst trigger for a very bad night!).
I only get trouble with my lower legs - so knees down. My calves didn’t used to cramp but that’s definitely ramped up the last 6 months (I’m only 3 months pregnant) - I sometimes feel like they’re vibrating/humming and wondered if anyone recommends devices that send pulses to try to trick legs - TENS machine or otherwise?
When I used to get RLS I did the exercises for the leg involved as described under calf stretch and front thigh stretch at healthline.com/health/restl... In addition, I walked for about 3 to 4 minutes rolling the foot of the leg affected back and forth as I walked. It worked every time although I might wake up later at night and have to do them again. Actually on the calf stretch I didn't hold it for 20 seconds, but instead did the exercise for 20 - 30 times. I also pushed my heel back before I leaned forward. I, also moved my leg to each side when it is stretched. On the thigh stretch, I only held it for a few seconds, but then repeated it 6 - 10 times. This might not help, but is worth a try.
I'm surprised your doctor recommended that you continue Ropinirole in pregnancy. That's not consistent with any guidelines that I have read.I understand that codeine is ok in pregnancy (need to check my source here).
I was on medication when I discovered I was pregnant...came off meds within a fortnight and found that my RLS/PLMD was manageable off meds. I took a lot of magnesium and occasionally phenergen (anti histamine) which although can trigger RLS helped me get a good night's sleep occasionally.
This may be the reference: it says "Codeine can be taken in pregnancy, although long-term use is not recommended.
If you take codeine at the end of pregnancy there's a risk that your baby will be used to having codeine. This means that they may have withdrawal symptoms. If this happens, your baby may need extra time in hospital after delivery for observation.
thank you for this - my Dr also suggested I take codine if it’s really bad instead of more Rop… he said it was safe for pregnancy… but this does not sound good advice now reading this 🙈
First test ferritin (which should be above 75 or even 100) and transferrin. Act accordingly. Remember that your baby is a bit of a vampire! If the numbers are bad, then an iron infusion is indicated - you and your baby do not have the time to take pills, which may take months. Take Gentle Iron anyway (Iron Bisglycinate). Also, check folate and B12.
I have the textbook, (Buchfuhrer et al), which says that there is no absolutely secure knowledge of the issue.
But there is a list of meds in case of symptoms being so disruptive that some drug is better than no drug, and where your acute distress and lack of sleep will do more harm than carefully chosen medication) ALL the dopamine agonists are in Category C - do NOT take in pregnancy. (My guess is that DAS might potentiate the possibility of RLS in your child, which no mother wants). In Category B, 'mildly risky', is LOW dose methadone and oxycodone (short-term use). Many of us here are familiar with these. Others in Category B are Cabergoline, pergolide and zolpidem. (The list I cite below is a bit different, and no doubt more recent).
Categories C and D, 'do not take', in addition to ALL the dopamine agonists, are gabapentin, codeine, tramadol and most of the opioids, temazepam, most benzodiazepines and high-dose methadone.
Another problem looming is breastfeeding. Dopamine agonists decrease prolactin and may prevent you from successfully feeding your baby. Most drugs will pass through to the breast milk - but with low-dose methadone passing only minimally.
The truth is they just don't know for sure. There is no drug at all in Category A. If I were you, I would write to Doctor Buchfuhrer, who will reply - amazingly! Find him at rlshelp.org, the website of the Southern California RLS Support Group. Go to the letters section and follow the instructions.
(I have just checked the page and there is a section on RLS and Pregnancy in the TREATMENTS section. This site is associated with Doctor Buchfuhrer, so you can be very confident with the information. Doctor B is famous amongst us, and at the forefront of RLS research).
The book is outdated. Cabergoline and pergolide are both dopamine agonists. The reason DAs should not be taken as they may harm the baby. The treatment's section of the site is also outdated and he has said he hasn't the time to update it. So is the email address. The correct one is somno5586@outlook.com
thank you for this information- nice and clear. I don’t want to be taking anything really so am trying to find a route off it all. But appreciate this won’t be fast or easy. Out of interest I’ve read lots that states DAs are bad for babies but never anything specific on what the harm to the baby potentially could be - have you seen this or are they too worried to print it/ don’t actually have enough data to price things either way? Presumably they don’t get willing control samples to properly test it.
I can't stress strongly enough the need to come off the DAs. The potential harms are not fully known but many medications can affect foetal brain development, particularly in the first trimester. There may be other risks but I'm not across these.Your doctor should really be advising you on this.
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In my belief this is what caused my RLS!
RLS what for I do now
RLS seems to be mainly in my arms now
Finally off Ropinerol but horrible RLS now... 
