Restless Legs Syndrome
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Advice restless leg Syndrome

Hi, i have just joined this group, i have had restless leg syndrome for 7 years, and have tried different medication. I have just been put on Pregabalin Teva 25mg twice a day, as well as using Rotigotine 6mg patches once a day. got to be honest not feeling 100 per cent and my doctor did warn me it will take time to get used to it.

Just wondering if any one has any tips fpr advise please as now also been put on the sick from work.

Thanks in advance

Trudy

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Hi, i am sorry to say that your doctor shouldnt have put you on 6mg Neupro Patch, the highest patch for RLS is 3mgs. Did you start with the 1mg patch and work up to the 6mgs ? If you did then your doctor should have stopped at the 3mgs. To have to increase it that much i suspect Augmentation. Did your doctor add the pregabalin because the patch wasnt working so well. So, would like to hear from you how you got to 6mgs.

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Hi, i started off on 1mg patches and was slowly given up to 6mg patches, it was my neurologist that prescribed the patches and wrote to my doctor and told them to increase it slowly when needed. He has added the pregabalin as patch still work a little but advised these are for anxiety aswell but supposed to help my legs.

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Well, the top dose for that patch IS 3 mgs. When your doctor keeps upping the dose he is doing you no favors at all. Put augmentation in the search box and read about that as it has to do ONLY with dopamine meds and being on doses that are too high. When the dose gets too high, it will turn on you, and actually make RLS worse in most people. NO RLS researcher or expert or specialist is going to put any RLS patient on 6 mgs.

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hi i am going back to my GP today so hopefully will listen to me and redude the doasge thank you for your advice

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HI Doodle76 I have been a member of this forum for sometime. I have literary tried everything going for RLS.the only people that know about RLS is the people on this forum the people that suffer with RLS. Your GP & neurologist don't have a clue about RLS. there are two people that have helped me with this horrible condition & they are on this forum. The patch you are on should not exceed 3mg,(I have been on it) take advice from Elisse she is very knowledgeable when it comes to RLS.have you tried taking any painkillers? such as tramadol along side your patch. But don't forget not everyone is the same, ask you GP about tramadol before deciding for yourself. tramadol is very addictive you cannot exceed no more than 400mg a day X

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Hi Connie50, thanks for your reply, unfortunately i have tried Tramadol and that didnt work. i originally had the symptoms when i was pregnant with my daughter 18 years ago and then it settled down for a while, then fast forward to 7 years ago and after begging my gp who i had then to refer me to a specialist after my husband googled and looked into all my symptoms,(at this point i hadnt slept properly for 3 weeks) and realised i had all the symptoms for restless leg syndrome. no one believed us at this point, i was given temapzem to help sleep it didnt work, they tried me on zopiclone and that didnt help. i changed doctors and they finally refered me to a neurologist who just basically did reflex test and said yes you have RLS take this patches and you will be fine. I then went to my GP who said the neurologist said to start at 1 mg and work up and so that has happened for the last 5 years, slowly increasing patches and then various painkillers, i have since asked again as moved area to be referred to another neurologist as my GP dont know a lot about it at all. i went on monday to be told sorry there is no cure and you have to learn to live with it, GP said try pregablin along with the patches and see how you go, i also had to get signed off work as for some reason heat really affects it badly for me, and i work night and day shift which doesnt help. the sad thing is i work for the NHS in a hospital and half the staff have no clue what i am talking about.

sorry for the long reply

Trudy (doodles 76) xx

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Doodles

I am truly sorry for your misery. I am a fellow RLS sufferer for many years. I agree with the others on this forum that the medical community hasn’t really figured out how to help us. We have each one had to walk our own journey, trying medications, being temporarily pleased and then later being saddened when they stop working and then weaning off and starting new medications. Sounds like you are in the midst of of a long flare-up. I personally take Lyrica (really helps with daytime RLS symptoms) and I recently discovered CBD oil to be taken orally. When I am jolted awake in the middle of the night I am now reaching for my CBD oil. Research it. It calms the central nervous system so you can get back to sleep. But any dosage less than 30 mg of actual CBD doesn’t help me. It is pricey but worth every penny as far as I’m concerned. It’s been a Godsend for me. Blessings!

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Hi Lolly53,

Thanks for the reply, i am now in the process of going back to the doctors as really not happy with medication and things. which CBD oil do you use? i have just looked it up and amazon sell it but quite a few and not sure which ones to buy. thanks Doodles

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Hi Doodles

Here is the link to the website of the company I order my CBD oil from:

pluscbdoil.com/

I use the concentrates. I prefer the Gold formula but am currently using the green. The 10 mg (largest) tubes give you more CBD per dose and I have figured out that I need at least 30 mg of CBD per dose (read the label closely and you will see that with the large green concentrate you get 40 servings of 38mg CBD per dose. With the gold formula large concentrate you get 40 servings of 60 mg CBD per dose. Be forewarned though. The stuff is nasty. With the green it is more of a paste. I put the dose on a spoon and hold the spoon in some warm water for just a couple of seconds and then take it real fast and drink the water to wash it down. Blessings!

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Ah, just read your post and find that it answers most of the questions I had. Still curious if you can take the capsules and get relief though.

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I’ve not tried the capsules but would love to hear if they work for anyone. I do think that it would take a little longer for a capsule to “melt” and to take effect than does the oil. Since I take my CBD in the middle of the night, I want relief ASAP. Let me know if you have success with the capsules should you decide to try them

Blessings!

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Hi Lolly53,

Thank you very much for this i will be trying this. i appreciate all the advice you have given me and will keep you updated how i get on many many thanks

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Lolly, I just joined the group yesterday. I'm in a bit of a rush this morning so I don't have time to explain much, however I wanted to clarify something you mentioned about jolting awake at night. Is your jolting awake at night because your legs kick or is it simply because you find yourself waking up for no apparent reason. I've recently gone up on my mirapex to 25 mg and after sleeping three or four solid hours I wake up every 45 minutes thereafter. Sometimes I wake up and absolutely cannot go back to sleep. My legs are not kicking, I think it's just the medication. I started out on gabapentin 300 mg two years ago and it has stopped working. I take the least amount of meds I can because I'm so nervous about all the darn side effects.

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Hi TBanks

What I mean by jolting awake is that my whole body is in full RLS mode and literally buzzing and oftentimes twitching and jerking to go along with it. Miserable indeed. But I have found CBD oil and am truly thankful that it calms my body in less than 1/2 hour so that I can get back to sleep. I just responded to Doodles with the website and more information of the CBD oil I use.

You mentioned you are on Mirapex. That particular medication worked really well until it augmented my RLS so that I was suffering with it during the day. And when I had to wean off of Mirapex it was a few nights of hell. But when I got off of Mirapex my daytime symptoms disappeared for the most part. Please don’t keep increasing your dosage. I recommend getting away from Mirapex. I also have been taking Lyrica (don’t ever want to be without) and can ride in a car all day without trouble! The only side effect of Lyrica for me has been weight gain and a voracious appetite! 🤣

Blessings!

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Hi Lolly53,

Do you ever take the CBD capsules? I noticed that they come in 10 or 15 mg, do you take 2 of the 15 mg to compose the 30 mg that help you? I am sorry but there's so many choices I'm confused. Could you be real specific about the CBD oil you use, form, amounts, etc? Is Lyrica the only other med you take? Right now I'm taking Sinemet and Gabapentin. Waiting for augmentation and trying to plan ahead. Hope I'm not being a pest. Like everyone else just trying to find something that helps. Thank you for posting. This site is truly the only place I can find good information. Bless you all.

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Hi Doodles your experience is very similar to mine. My GP threw massive amounts of zGabapentin my way which I hate. It had no effect except that I put a vast amount of weight on over two years. The neurologist now does the same but with Ropinerol. I have had Ferritin infusions experimentally but no bloods were taken and as yet no follow up. The thing I rely on most is something I saw here, Magnesium spray. I was taking Magnesium tablets but I saw a recipe here to make a spray. It's not a cure but it's the nearest I've ever been to one and I am very gradually reducing my Ropinerol. Recently I had surgery to fuse my ankle and I can't walk and I was really anxious about RLS as I pace up and down during an attack. I made up my recipe and I bought 10 ml bottles with rollerball tops. I keep these filled up and just roll on the oil regularly throughout the day as a preventative measure.

This site has been a lifesaver or life giver for me. I was very miserable as only fellow sufferers take RLS seriously, friends etc think it's trivial and no cause for concern. My attacks are less frequent and shorter yet I take less medication. Without this site my life post op would be unbearable. I wish you luck in finding some relief and I am glad you found the site.

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Hi Nightingale-5, it has been so frustrating trying to explain to friends and some family members what it is like. this site has been a lifesaver as i didnt know very much about it until i joined. could you send me the recipe please so i could try it thank you

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I bought the flakes online what originally but magnesium flakes are easy to buy now.

Restless Leg Oil - Magnesium Transdermal oil

250 ml. Spring or filtered water

1 cup magnesium chlorate flakes

10 drops Lavender

5. drops Marjoram

5 drops Ylang Ylang

a. Put water in pan and boil.

b. Stir in Magnesium flakes till dissolved.

c. Cool to room temperature.

d. Add oils once cool and stir well.

e. Using funnel pour into spray bottle

f. Store in cool dark place.

I went all out a bought a lovely amber spray bottle but anything will do. It last for ages once you've made the initial outlay. I hope it works as well for you. Just a reminder that I'm also taking one Magnesium tablet a day as well.

Good luck😀

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Thank you so much for this, i am going to try this, my doctor has now reduced my patches doqn ans slowly going to take me off them, thank you for all your help

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I don't want jump around on this discussion but I need to comment on Ropinerol (BTW this is my first comment to the site). It ruined my marriage!....do I really need to say more. As many have commented, the medical professionals are still either completely out to lunch on RLS or are just experimenting. Be carefull! Take your own notes. I started on 1mg of requip and it was very effective but quickly needed to increase my dosage...went up to 4mg at night which helped my RLS a lot...but wrecked the rest of my world. No details right now on that. After about 2 months I am down to 0.5 mg of Ropinerol. The symptoms at night are now very frustrating. 150mg of Wellbutrin in the morning has helped me but I need 50mg of Trazadone to sleep. The Trazadone is VERY helpful, but I really don't want to depend on it if only because there are times I can't take it.

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Steve all I can say is I understand where you are coming from. At the moment I am trying to reduce the Ropinerol, I have side effects which at the moment I have kept hidden but which will not stay hidden. I wish I could just throw them out but i know that's not safe. I am so sorry that you've suffered like this.

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Hi doodles, sorry i did not get back to you. I cant believe what you said the neuro did as a test for RLS. !! There is NO test for RLS, only when you say what your symptoms are can you be diagnosed for RLS. I am sorry for any other RLS patients he gets to see. Correct there is no cure for RLS, but there are treatments which can be trial and error on finding what works and suits us. If you can print off some info about RLS for your GP to read , altho it doesnt take long for a GP to look on the internet to get the same info. You need to come off that 6mgs patch or try to reduce it, which is hard to do and needs to be done very slowly. Look for RLS and Augmentation and take that info too along to your GP. The NHS is lucky to still have you working when you should be retired and trying to enjoy your retirement now. I hope you get some relief soon and your doctor takes this seriously and will treat you well.

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Thank you Elisse, i have off lots of information now and going in with everything and hopefully will reduce the patches down for me, the advice of everyone on here has been overwhelming and a relief to know there are fellow sufferers out there and i am not alone as that is how it has felt. thank you so much

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I know I've answered your message but have you ever heard or a DR Mark Buchfuhre he's a well known DR FROM THE STATES,he's wrote several books about RLS & I think everyone on this web site knows about him,you can send him an email & he will defiantly write back to you he's brilliant,if you are interested send me a P/M & I will forward you his email address on to you,take care X

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hi doodles76 I have wrote you a message before but its disappeared this as happened before with me anyway I will try again.I have tried all the meds you can take.have you tried repinarole (you have to be very carful with this med) make sure you don't augment, this is the only drug that works for me along with the tramadol, All D/A don't work for one but its like everything else, it works for awhile then it stops, so you take more & more that's how you get agumentation,that's what I've got again, had it once before (augmentation) but when the RLS gets bad you take anything to stop it.like I did, but know I'm weaning of It down from 2/3mg to 0.75 but still got to wean myself of the 0.75 & its hard going. Will speak with you later X

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Hi Connie50,i think i have had that is it tablet form? i am going back to my doctors as not happy with the medication and things, i was awake again all night last night sat crying at one point as legs were unbearbale. thank you x

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hi doodles76 are you new to this site only I've just had a message from health unlocked saying I have a new follower is it you? as for going back to see your GP Print some of the comments of, what people say about RLS.as for the crying & being up most nights I've been & done it. It makes no difference what you say to your GP or neurologist about being up all night, because they do NOT understand how RLS works. The only people on here, no more about RLS than any GP or neuro so if you have a question please don't be afraid to ask the community, because some one will always answer you. X

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Hi Connie50, sorry for the delay in replying to you, my kids received soem bad news so havent been on here. yes i am new on and i followed you and couple of others as so helpful to me. I have been back to the doctors and they are now weaning me off the patches slowly they admitted they dont know much about it but was researchng it. i have now been put on 4mg for one month and then slowly taking me off it completely. thank you so much for all your advice and help x

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good morning Doodles 76 no problem,you will be able to find all the info on RLS on this web site don't even bother with your GP like you have said they have said they don't know much about RLS.Its nice of them to admit it because some GP don't know even about augmentation as well as weaning of D/A I'm so glad that they have admitted to not knowing about RLS you don't get many GP or neuros saying it.like I've said if you want to know anything about RLS don't be afraid to ask because the people on here are so knowledgeable when it comes to RLS.they will try & answer your questions,Are you from England? & where abouts do you live? if you find that this is to invasive please say so. how are you weaning down of your meds (Patch) its horrible without painkillers the painkillers help me tremendously without them I think I would go mad.I have to take tramadol they say on here its one of the best.but you have to be very careful in case you get addicted to them.the maximum dose you are allowed is 400mg so I take between 300/200mg depending on the pain,& I try to leave it while night time because this is when its at its worst. Anyway Doodles76 I'm going know going out for the day,speak to you later X

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Morning Connie50, i have had about 4 hours sleep for the last two nights, i got the recipe for the magesium spray of here from Nightingale and that is really helping me. yeah i am from England i live in Billingham near middlesbrough. this site has been brilliant though and everyone advice has been great would be totally lost without it. speak to you later x

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good morning Doodle76 glad you had four hrs sleep,hope it lasts, every thing I try it works for a couple of days then back to square one again. The magnesium spray I've tried it but not this one were you have to make it yourself. I bought it of amazon,gave one to my sister Margret,she has got RLS very bad 24/7 her GP sent her to see a psychiatrist because she as it that bad, she has other troubles on top of that but its the RLS that's kicked it all of, it caused her to have severe bad depression, so her GP sent her to see a psychiatrist it got that bad, anyway Doodle76 enough of the doom & gloom.im so glad you are sleeping again hope it keeps up, I thought id found the cure for me but it turned out to be no good, there is no cure for RLS just medication to help ease it.whoever finds a cure for this, he/she should get a medal. Anyway Doodle76 hopefully going out for our lunch. Speak to you later take care X

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The spray I make uses the same active ingredients as the bought one, I add essential oils but you don't have to. I don't go anywhere without it. The recipe is not mine I was given it on here. I bought the ingredients months ago and I still have loads left, it's very economical (unless you choose an amber spray bottle to keep it in, but that's my little bit of luxury)

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can you send me the recipe please will try it for nought I bought one of the amazon web site magnesium that is. But it doesn't do a thing for me at all. but yours I will try it. it doesn't cost nothing to try it.I know everyone is different when it comes to meds I think I have literary tried everything going,but haven't found the right one yet.when I do I will be the millionaire you read about on here.HA HA HA. TAKE CARE X

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Of course you can have the recipe but its base is Magnesium and I also take a Magnesium tablet every day. Some people leave out the essential oils or use fragrance oils which don't have the same properties as the essential oils. I have to say that I think it's a mix of everything that works for me.

RLS or Magnesium Transdermal Oil

250mls spring or filtered water

1cup Magnesium Chlorate flakes

10 drops Lavender essential oil

5 drops Marjoram essential oil

5 drops essential Ylang Ylang oil

Boil water

Add flakes till dissolved

Cool to room temperature

Add oils

Using funnel pour into spray bottle

Spray and massage into legs.

This is the recipe that was on this site months ago and it's helped me but we are all different. I went on the net for the flakes but they are everywhere now. I made this batch months ago and I still have some left and plenty of ingredients left. Best of Luck x

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As a ps don't suppose you can give me a recipe to help me balance on crutches! 🤔

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sorry I don't I'm also having problems not with crutches, but trying to hold on to things since falling down the stairs & breaking my wrist.i cannot hold on to things properly my wrist is so weak..

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Was only joking really, I have some neurological damage after a disc removal but it's not been followed up and I'm paying the price now, no crutches, no going out x

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Soaking your feet in Epsom salts and hot water is another way to absorb the magnesium, not a cure, but helpful

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your messages always show up , Connie. I see your other one. So not know what is going on at your end, but every time you say yours has disappeared it is right there. :)

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its got to be my computer

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Hi Doodles 76, As with everybody else's responses here, I agree wholeheartedly. Very few medical practitioners really understand RLS and the most informed advice is on this site. I have previously posted about a doctor who specialises in treating RLS, not with medication, but with something called pressure release manipulation. I am highly cynical of anything or anyone who thinks they can 'cure' the symptoms of RLS, but I can only say my husbands pain levels have gone from being 8 or 9 out of 10 down to 0, or 1 or 2 out of 10 following this treatment. I'm not sure if this forum is UK based or international so depending on where you are this might not be an option, but if you can afford this private treatment (no more than a physiotherapist might charge), and live anywhere near Colchester UK, please, please check him out. His name is Dr Michael Monk and he has been mentioned previously on this site I believe. I have no connection with Dr Monk other than as a patient by the way. I really hope you are based somewhere relatively near and are able to give him a try. At least check out his website.......

Good luck.

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I have been seeing an osteopath in Littlehampton UK by the name of Dr Theo Peters. He does the same pressure release manipulation. I mentioned Monk and Dr Peters said he taught him the method many years ago. I'm much better than 4 months ago, but have changed many things in that time and not sure which one thing is helping, but I don't care as long as I sleep so I'm carrying on with them all, including seeing Dr Peters. So if anyone lives nearer Littlehampton than Colchester, you have another option!

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Doodles don't forget to ask when you see your GP for a blood test to check your ferritin iron levels. When you get the results ask for the actual numbers as what is considered normal for someone without RLS is not normal for us. It needs to be over 70, some experts now say over 100. RLS UK has a section for Professionals, send your GP to that x

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Hi Doodles , I totally agree with others on here. Get off the patches asap. I augmented on Ropinerol and would never go back on any form of DAs. When you think they have stopped working this is not the case they are actually making things much worse . I had just assumed my RLS was getting worse never suspecting it was the drug that was supposed to make things better but doing the exact opposite. It is a vicious circle. You say Tramadol did not help but it may be worth trying it again when you are off the patches.

A combo of Tamadol and Pregabelin have now got my symptoms under control. I fear that until you are off the patches you are not going to get much relief whatever else they give you. You do need to come off them gradually and it will be difficult and things may well seem worse before they get better but they will get better, giving up the final doses seem to be the worse part for most people. I was on quite a low dose of my drug to start so I just gave up taking it . I had 2 weeks or so of being up most of every night pacing the house. I started taking Tramadol 100mg and that helped and then I asked my GP for the Pregabelin (150mg) both taken early evening .within 3 weeks I really began to see a major improvement . I have no idea if these drugs will do the same for you. I can't see the pregabelin helping until you substantially reduce your patches. Some people on here have said the pregab' has made their weight increase but that has not happened to me. I wish you much luck and keep us posted with your progress

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