I have had restless leg syndrome for several years and over the last year have been on ropinirole 3mg daily. This worked for a while but over the last couple of weeks I have been desperate its back and with arms involved as well now. It happens when I get into bed mostly but over the last week or so I can get it anytime. I can't keep still, can't lay down, can't sit. Someone suggested Magnesium so I take that as well now but I am in a terrible state when it happens. GP says i am on a high dose of medication and that was that. I can't go on like this. My dad is terminally ill and we live 6 hours away. We frequently make the journey and stay in a hotel. This means that I am pacing in the room and my husband can't sleep either. I don't know what to do.
I think really you've got to go back to your GP and make sure he understands your situation fully.
4mg a day is the maximum stated in its licence for RLS and at one time I was told not go above 5mg. Luckily two 2mg tablets a day, one generally about mid-afternoon and another last thing, has worked for me for a couple of years now.
Also lack of sleep worsens the condition and I guess from what you write you may be having problems getting to sleep.
Besides ropinirole there's rotigotine patches – not had them myself but people seem to find they work. Gabapentin, pregabalin and gabapentin enacarbil work for some people (not me). Some painkillers and tranquillizers are also sometimes used in treatment, I read.
So, basically I would think you would need to seek your GP's help to get the RLS under control and get some decent sleep.
Thanks Robert, i already take Gabapentin as well but don't find that helps at all. I am going to ring GP again tomorrow. Problem is though you can't get an appointment, you have to talk to the receptionist who will then ask a doctor if he/she is going to ring you back. If its not deemed serious you get nothing, if it needs attention but is not serious, in their opinion, you might be asked to go in about a week's time or if by some chance they think it needs attention they will ask you to come in. Its a gamble. I have an appointment next week but its to discuss an ongoing foot problem and we can only talk about one complaint per appointment!
Yes, I have telephone consultations too.
It's quite possible your doctor's concern is augmentation when reluctant to prescribe a higher dose (or something else), in which case I would guess you need to make it clear that you can't go on with the situation as it is.
As you describe it, I wouldn't have thought it impossible that a prescription be sent electronically to your usual pharmacist the same day.
Hi Lynne, Sorry to hear your suffering so badly, it is horrible! I have bad over last few months. Someone suggested to me about magnesium. I have a spray that I will use for the first time tonight. Hoping it works as I'm so so tired. Sounds like your under a lot of stress at the minute and I know my rls is worse when I'm stressed. I have been taking omeprazole for heartburn and I think this makes it worse. Could it be a medication is making things so bad? I know that antacids aren't good. Also I have an app on my phone that I have on when I'm trying to sleep, I like the sound of rain. I know its something simple, but I does de-stress me and takes my mind off the legs (I have it in my right arm too). I hope you get some relief soon😊
Julie
No its not actually impossible and has been known to happen, thanks so much for taking time to reply to me
I am on omperazole as well and I also love the sound of rain, going to look for that. I have thought and its possible that the stress is what has triggered it again. There's no hope of the stress going away anytime soon, I hope I can get some medical help.
Thanks for being kind enough to reply
Lynne
I know this may not help but I had the same experience with Ropinirole. I was able to ring the doc who stopped the Ropinirole and put me back on Clonazepam. At least I am sleeping now although not well. The doc won't try anything else. Until I see a neurologist
Thanks to all your replies I might have found a pattern here. Last year i had to have surgery to remove a disc in my neck. At the same time i had begun to lose balance and co-ordination. neurological tests were not conclusive, if they can't give it a name it can't be treated. I have severe REM behaviour disorder for which I am given Clonazepam. I am also on Gabapentin. It should be enough to keep an elephant asleep and still but none if it is working! I am beginning to think that the answer is neurolgical but the neurologist has discharged me!
Did the RLS worsen when you started taking omeprazole?
I think taking a PPI (such as omeprazole) will undoubtedly raise concerns about iron levels and I would be surprised if a doctor prescribed anything else until that was resolved.
Hi
That app really has helped, there's loads of noises to choose from. Also I try to get my room as cold as possible before I get in bed. I have been in the spare room since Xmas, not fair on hubby, my scratching drives him mad. The more I look into this omeprazole thing, the more I'm convinced that this is the root of my problem. I'm trying my best to control the acid by diet. Tonight is the 2nd nigt without
Sorry, stupid phone 😊 2nd night without it so early days. Its worth doing some research on this, has been a bit of an eye opener. Hope you drift off in the rain 😊
It has worsened yes since taking the Omeprazole. I have a hiatus hernia thats why I have the omeprazole. I am willing to give anything a try!
Thanks again
Hi Lynne. I know that my RLS improved when I stopped the nightly tagamet or zantac. I too have a hiatal hernia. Everything gives me heartburn except raw fruits and vegetables. Even a bowl of cereal. The heartburn can be somewhat un-nerving. Whenever I feel heartburn come on I take either papaya enzymes or some form of zinc. Sometimes I will pop an antacid and then I ALWAYS get an RLS attack. Same is true for Benedryl and melatonin and even eating a large meal can trigger an attack. When I do get an attack (which seems to be happening more often for no apparent reason) I take an iron tablet if the attack is at night. If it's during the day I just gut it out. For me it has to be iron bisglycinate. Ferrous sulphate does not work for me. And even the bisglycinate only works for one night. I am far from anemic and my iron stores are around 100 yet the only thing that stops my RLS is that iron pill. I wish my brain could just get the iron it needs from my stores but that may be the whole or part of the problem with RLS...brains that cant acquire iron once it's bound up in stores.
I never take iron except during an attack because I truly believe it is a waste of time to just keeping adding to my stores. I know the so-called RLS experts think high stores will lessen RLS symptoms but I just don't think so. Good luck and keep us posted.
I don't suffer from these gastric problems but am gluten sensitive. I'm now essentially gluten free but remember that pineapple, particularly the core of the whole fruit, was very helpful, more so than papaya extracts.
I wouldn't try or let myself get prescribed iron/ferrous sulphate – leave that compound for killing the moss in the lawn! I used to buy capsules containing Blackstrap Molasses with 15mg iron as ferrous gluconate but they've stopped selling them. When these capsules run out in a few days I shall be trying some with ferrous bisglycinate chelate.
Iron is needed to make dopamine and I believe generally people who develop RLS because of low iron levels come clear of it again as soon as they resolve their low iron problem. But it does also occur to me that not everyone with anaemia has RLS.
Iron levels in the body are circadian, so research has looked at this in relation to RLS. There seem to be iron regulatory proteins (IRP's) that control the amount of iron cells have to make dopamine and it may be these IRP's that are circadian controlled. However, RLS studies also show (from corpse examination, I believe) that dopamine is not always low in RLS sufferers. There are other circadian-controlled substances, Tyr and AAAD, which control dopamine production in the presynaptic neuron. There may even be circadian-controlled substances affecting the way dopamine crosses the synaptic cleft.
So, in summary, definitely you need iron, I don't think there's much sense in taking too much which might poison the liver. Also, if you do take iron you should also make sure you get enough zinc and copper because the three compete for substances to bind to when being digested – and indeed, from my own family experiences, this is something your GP may not tell you.
[It seems my naming companies caused problems with my post above.]
Hi lynne
my best suggestion is that you read the discussion "restless legs and diet"
the FODMAP diet works for some people. For me it is not yet a complete cure but i am getting a lot more sleep than I hadbecome accustumed to.
Read the information and look at the suggested web sites.
i recomend a dietician to help you.
i am appalled to hear your doctor treats you so badly. I have to assume that the UK medical system is dreadful
if you have any questions about fodmap please feel free to come back here so i can help as much as possible.
i am not selling anything to do with fodmap diets as you will see all the information comes from the Monash University who invented it at the cost of a book or a phone app. There are also other sources that have adopted the fodmap diet.
it was invented for irritable bowel syndrome but there are a few rls people who have benefitted
good luck
Graham
Thank you for all that information Udon. The melatonin is interesting. In the past that has always helped me sleep but have tried it recently and had a terrible night, but only since I ve been on the omeprazole. Last night was the 2nd night I've not taken it and there was an improvement in the rls. The heartburn hasn't been as bad as expected, but I've been really strict with my diet. It sounds like you have an awful time with acid 😞
Hi Graham, sound like the fodmap diet could solve a few of my issues too. I will give it a go, thank you.
Good luck
I hope you are among the lucky ones who it helps.
It apparently helps about 70% of ibs patients but I have known 5 RLS people whoi have tried the diet and four have reported significant success. A couple are still on low doses of medication. I cant take any of the medications I have tried so I was very happy that the diet worked for me. I have recently found that I can get excessive with even low FODMAP foods Recently mandarines came into season so I was eating 6 a day - bad move so I cut them out and I am improving again. I expect that when I return to normal I will be able to eat one or two a day. The message is to eat a variety of allowable foods.
I hope to hear of your success.
very interesting reading my rls friends lol. I have had restless legs badly for three yrs and it has affected so many areas of my life. Now i am restless legs free and immediately and have not looked back. I took FERODAN oral surup for iron, i truely believe this iron is best, i think lilquid absorbs better than tablets also, but from day one i have been fixed. i also didnt start taking the iron for this reason so it was a bonus. I was low in iron so the doc gave me this solution. I ENCOURAGE THIS SYRUP . please let me know how you are all getting on, i so sympothise with this ailment as i know how much it can effect ones life and lives of those around you and the quality of life.