Hi, I'm new, my story and a few questions.

[ELMAGO_1]

Hi, I’m 24 years of age, and I have RLS (100%, although yet to be diagnosed). It started off in early December, very mildly, occurring in just my lower right leg, I literally passed little remarks on it as I was still able to sleep brilliantly and symptoms were very light and only occurred at night.

However from early May until present things have deteriorated very badly, it now occurs in both legs and other parts of my body and affects me all day long.

I have an appointment with a rheumatologist on the 17th of July; first and foremost to diagnose me with what I’m certain is RLS.

It’s making my everyday life a living hell, no exaggeration, as well as hugely limited if any sleep.

It’s making my everyday life daily functions extremely unpleasant.

A few questions I have to ask, and I would be very appreciative of any answers.

What is the best medication to control or eliminate these symptoms (If possible)?

For those who suffer from RLS during the day, does anybody take medication during the day and how affective is this for controlling RLS?

I plan to start a Full time teaching course at university in September, I have just been accepted into it, it is a hugely demanding and grueling course and to be honest if this goes on I don’t think I will be able to go through with it.

I’m not a fan of medication of any sorts, but I need something to make this bearable.

This is a huge cry for help and I would be extremely grateful for any responses.

[Hidden]

Hi sorry you are suffering like this.Take a look at rlshelp.org as it has a mine of info about rls.First of all check out all the stuff that can make rls much worse such as most antidepressants, anti sickness meds etc.Most meds for rls fall into 3 main categories. They are painkillers.dopamine agonists and drugs used to prevent epilepsy.Some use a combination of meds.Most get a good response from dopamine drugs the main ones being pramipexole, ropinerole and neupro patch.The patch is a slow release so helps many who have rls during the day.Tramadol seems to be the main painkiller used but I must say it didnt help me.The main anti epileptics used are gabapentin and pregablin.However there can be a problem with augmentation with the dopamine drugs whete in the long term they can make symptoms worse.Many foctors dont understand rls and just keep upping the doses which is the wrong thing to do.It is usually a neurologist that treats restless legs rather than rheumatology. Learn as much as you can about rls , that website is by a worlds expert so read it and you will be better prepared for your appt.good luck kim

[Hidden in reply to Hidden]

Hi P1pp1ns

I'm also new on the site. I have had rls on and off for the last 20 years. Tried pramipexole which helped to begin with and then it also got worse. I am taking an anti-depressant and am interested to read that that could make rls worse. Thanks for the link, I'll check it out. Just wondering how to get off the anti-pressants safely. Will check with my gp.

Many thanks

Irma

[Hidden in reply to Hidden]

Hi Irma and welcome, sometimes it is necessary to take antidepressants so def seek advice if you are considering coming off them.They do make symptoms of RLS worse for many people but depression can be a serious problem too .It maybe that some have no choice but to take them then take meds to deal with RLS..Good luck x

[Hidden in reply to Hidden]

Thanks Pippins.

[marsha2306 in reply to Hidden]

I was on the antidepressant Citalopram (20 mg) for 7 years. To wean off, I took 1/2 pill every day for 2 weeks, then the 1/2 pill every other day for 2 more weeks. Then I stopped altogether. Worked like a charm.

[Hidden]

Meant to also ask have you started any new medication recently which could be making your symptoms much worse?

[ELMAGO_1 in reply to Hidden]

Thanks very much for your response. I have taken no medication (Apart from a small dose of amitriptyline a month ago for just the one night, dumped the packed after how tired i was the next day, regretting it now, so basically none) , I am from the UK. So a little apprehensive about medication, and wonder what would be the best one to start. Little to no sleep is very irritating but the day time RLS makes my everyday normal tasks a nightmare. So any meds that could ease or alleviate day time symptoms would be great. thanks

[Hidden in reply to ELMAGO_1]

Hi I am in uk too but the eebsite I gave you although an American one contains the best info.Glad you ditched the Amitripttyline as its top of the list of drugs to avoid as its sends symptoms crazy! I started on mirapex(pramipexole).it worked marvellously from night one but I had to increase the dose every year or so.We now know you shouldn't go over more than 2 x 0.088 tablets but doctors still keep prescribing higher doses.A long lasting slow release med would prob be best for you ad you have symptoms during the daytime too.Neupro is a slow release patch but is expensive so GPs reluctantto prprescribe. Get a proper diagnosis and hopefully you will get on right med.Beware though in long term they can make symptoms worse for some and can be hard to wean off. You canmot carry on like this and need medical help.In the meantime look at websites for self help tips. You can learn alot by looking over old questions and posts.take care x

[ELMAGO_1 in reply to Hidden]

Thanks so much for your response. Do you get good relief with mirapex and is there any side affects you have suffered from? Does your RLS just affect you at night?

[Hidden in reply to ELMAGO_1]

I got excellent relief from mirapex but after a year it didnt work as well so I went up to 2 tablets then same thing happened. Would be good for year or so then have to increase. I only had symptoms at night to begin with, they then started coming earlier in the day and this is called augmentation. Its the big prob with the dopamine drugs it also spread into my arms.By upping my dise it eas making me better for a while but in the long run making me worse.I eventually stopped it altogether which was very hard to do. I now take strong painkillerd instead every evening.Maybe you could ask to try strong painkillers like tramadol or the anti epileptics like pregablin first as they font cause augmentation. Personally I dont regret taking mirapex as it gave me many years of relief but I would try alternatives first.x

[ELMAGO_1 in reply to Hidden]

Thanks, I just need to know as much information as possible before my meeting in July. Do you consume alcohol? Does alcohol make RLS worse in the short term or long term? I would consume alcohol about once a week. Does Tramadol give you relief during the day? Did you get much sleep on tramadol? Would you say your RLS is under more control now, than it was when you wernt on any mdeication for it??

[nightdancer in reply to ELMAGO_1]

Alcohol is one ting to avoid. It may help for the first couple of hours but it will come back to bite you later that night. Definitely a thing to avoid anyway, since most of the meds simply cannot be mixed with alcohol at all. And, many "all natural treatments" will be affected by

alcohol, just like "regular" meds.

[ELMAGO_1 in reply to nightdancer]

My experience of alcohol and RLS is this, I find when I am consuming it, it takes my mind off the RLS, and the more I consume (Becoming a bit drunk), I am in such a happy place that you almost forget you have it. When I go to sleep I get straight away, however I tend to wake up a lot earlier in the night than normal with no chance of getting back to sleep.

[marsha2306 in reply to nightdancer]

It's very strange but I have a glass of wine around 7 pm most nights and it does not have any affect on my RLS. I can also have ice cream late at night without any problem too. Very, very strange...

[nightdancer in reply to ELMAGO_1]

on rls.org you can see the list of Drugs and Foods to Avoid on the treatment page. A rheumatologist may know about RLS, but RLS is neurological, so a neuro or a sleep doctor may save yous ome time, unless you find a rheumatologist that is interested in treating RLS. Just a suggestion. Amitryptiline is tricyclic anti-depressant and is seconded only to SSRI anti-depressants in meds that can really mess with your RLS. The dopamine meds are the first line of treatment, or at least the first ones to try. Everything has side effects, of course, and no one med or treatment works for everyone. Treating RLS is a trial and error thing, and watch out for "too good to be true" promises you see on the internet.

[ELMAGO_1 in reply to nightdancer]

I took one tablet of Amitryptiline at its lowest dose over a month ago, I got a great sleep, it knocked me completely out. I woke up the next day like a zombie, and it took me until 6pm the next day to get back to my normal self, so I dumped the tablets. I hope this dose hasnt adversely affected my RLS. Could one tiny dose of it at its lowest dose affect me adversely or would you need to take them a bit more regularly to feel the negative affects?

[Hidden in reply to ELMAGO_1]

No dont worry about taking the one dose of Amitryptiline it will make no difference whatsoever long term.If it is going to make your legs worse it would happen within about an hour of taking it and wear off within 24 hours or so.Dont worry at all about that.You may be one og those people who can take it eiyhout problems it certainly sounds like it if you got a great nights sleep.The hungover next day feeling will often improve with use

[ELMAGO_1 in reply to Hidden]

I would be tempted to try it again, although its meant to cause augmentation so I would be a little apprehensive about long term use. But I would need something to help me during the day, does the Neupro patch aid RLS during the day?

[Hidden in reply to ELMAGO_1]

Amitryptiline is an anti-depressant, it doesnt cause augmentation. You are one of the lucky ones who have found it didnt make your RLS worse. For most people that med is a no no. The Neupro Patch works for 24hrs, you apply a new patch every day.

[Hidden in reply to ELMAGO_1]

Hi yes as Elisse has said ami does not cause augmentation. I know its alot to take it at first but basically the ones that cause augmentation are the dopamine agonist type of drugs(mirapex, ropinerole, neupro patch).Not everyone gets augmentation and it is less likely to occur on low doses.

Some other meds can make some peoples legs worse and ami is one of them.This is not augmentation but a temporary worsening whilst on them. If you improve over timd ami good for your legs this is unusual but not unheard of.Therefore if ami helped you to sleep then maybe thats the route to go down.You could take it earlier say around 6 oclock in eveming rather than bedtime then the drowsiness will work off earlier the next day, the drowsiness will improve over time.Maybe the neupro patch would be good for you as you get it during day too.Hope that helps a bit x

[Hidden]

I personally dont drink but have read on this site the general opinion that it makes rls worse for most people.The thing with rls is everyone is different and response is different to meds, foods, alcohol etc.Its about what helps you. For instance I have to keep my legs and feet warm at the moment I have 3 hot water bottles on them plus 2 pairs of socks! If my legs/feet get cold rls follows.This would be a nightmare for many rls sugfeters who have to keep them cool.Hot baths help me but othets like cold packs.Foods dont alter my rls but chocolate and icecream makes othets worse.Some meds work well for some but not for others. Does anyone in your family have rls? Mine is genetic type.Generally this is the type that starts early in life.My faughter is 28 and she had it very occasionally as does my mothet.Yours does seem to have come on pretty rapidly, for example I would have them maybe once a week at your age but got kore often once in my forties.There can be underlying medical conditions causing rls this is called secondary rls so its best to get all checked out.Make sure to get your ferritin iron checked as for some people it can cause rls.As with all rls related it makes knoe difference to others! X

[ELMAGO_1 in reply to Hidden]

Since my RLS deteriorated badly I have abandoned caffeine and sugar, and drink a lot less alcohol than normal. I dont use dairy products or eat ice cream or chocolate but things still seem to be the same if not slightly worse. I am on a few different supplements that I found on 'absolute cure for rls' website, that aim to heal inflammation but as yet I have noticed no results. I am on no medication, even alcohol doesnt allow me to get a good nights sleep, were it used to, I still wake up after a few hours If i am lucky enough to get to sleep, and never manage to fall back again with my symptoms pretty bad. My dad has fibromyalgia but never had RLS. Time is running out I fear in my quest to start my university course. I could never manage a full time course with all that's going on with my RLS.

[Hidden in reply to ELMAGO_1]

Tramadol didnt help me at all but many people find it very good.Before any treatment which was around 9 years ago I was up most nights pacing up and down very tired but rarely in the day.With the strong painkillers I sleep well almost every night.On the rare occasions that they do start I can easily walk them off so yes my symptoms are much better now.Some doctors wont give you anything stronger than tramadol for rls I get it because I have degenerative disc disease.Personally if I was starting from scratch I woulf try tramadol first, if no help tramadol plus either gabapentin or pregablin.Only then if this failed then a LOW dose of one of the dopamine drugs mirapex, ropinerole or neupro patch.Dont be tempted to keep upping the dose of these though best to swap treatments when and if augmentation happens, Yes must be very worrying with your uni coming up.Dont make any rash decisions yet wait and see how hospital goes could be underlying cause that can be sorted x

[BobM in reply to Hidden]

On meds, I take morphine to both kill pain and numb me down in general, gabapentin and pramipexole as accepted RLS medicines, albeit that wasn't their first reason for existence!!

The amounts etc have be tuned over 4 years and now do a pretty good job most of the time. I top up with oramorph on really bad days.

Kindest

Bob M

[Hidden in reply to ELMAGO_1]

Hi, i hope you get a med soon to help you. But just to say, i wish there was a cure for RLS, as that website states about RLS is inflammation, unfortunately there is no cure for RLS, we can only manage it by taking meds and looking to see if anything we may be eating or drinking or other medicines even OTC ones might be a trigger to make it worse. Only if someone has RLS that is mild , some non medical stuff can help.

[nightdancer in reply to ELMAGO_1]

the absolute "cure" web site has a lot of theories and I have read them all. The clue is to avoid anything that promises a cure. Lots of treatments and theories out there, but there surely is no "absolute cure". I won't go into detail, but there are many reasons not to pay out money to people like that, of that I AM sure. And, you said it wasn't helping anyway. lots of debate if RLS caused by inflammation, none of the researchers that deal with RLS in clinical studies put much stock in that theory of inflammation. It is classified as a movement related sleep disorder. There is also PLMD, and we can have both or only 1, (periodic leg movement disorder , which is picked up in a sleep study.

[BobM]

Hi, now thats a new one on me a rheumatologist diagnosing RLS?? How do they do that? I may have missed something however I didn't think RLS was diagnosable?? I thought just a description of your symptoms showed RLS possibilities.

I am very keen to know more much more!!

Kindest

Bob M

[Hidden]

Hi Bob, you are right, a rheumatologist wouldnt be able to diagnose RLS, only if they listen to what someone is saying what the symptoms are would they know, and that is if they actually know anything about RLS.

[ELMAGO_1]

My dad has booked me for an appointment at a rheumatologist as he think it may be fibromyalgia even though im sure its not. He says this is our first port of call, as it will be officially diagnosed here. I am in Northern Ireland, so not sure where to go about looking for a neurologist, but I will see what I can do. Just a bit curious about what meds to start with, and really dont want to use anything that could cause augmentation, as things at the moment are very bad. I never get more than 3 hours sleep at best and suffer from RLS all day, everyday.

[williesophie in reply to ELMAGO_1]

I know very little about RLS except my husband has been afflicted recently and going through a lot of trial and error. He uses 1/3 of a Neupro patch and at the moment, combines the patch with his "magic bullet" : 1/2 tablet of Tylenol 3= tylenol plus codeine. And his rls is pretty severe. Very low dosage and seemingly very few side effects. And no augmentation supposedly. He is also super sensitive to any medication. Just another tool! Good luck.

[ELMAGO_1 in reply to williesophie]

Is your husband getting good relief from this? Does he suffer from day time RLS and if so does this medication control or relieve symptoms? Does the Neupro patch work during the day? Is he getting good sleep?

[williesophie in reply to ELMAGO_1]

So far so good. He can get RLS during the day but less horrible because he can easily get up and walk around. The neupro patch was been wonderful...and no side effects and no augmentation so far. (I think lots of people have found it very effective) But the best has been the Tylenol 3 (plus codeine) I think it is the old original treatment from years ago. Like everyone is saying, each person responds differently. That's the crazy part. And it takes a long time to figure out what's working and what doesn't give you side effects. I am just thankful that this is working and is relatively easy to handle for him. Again, he is super sensitive to meds so for a "normal" person 1/3 neupro patch would never work and 1/2 tylenol wouldn't. IT's very frustrating.

[Hidden in reply to ELMAGO_1]

Hi to see a neurologist you need to ask your GP to refer you .When you say your dad made you a rheumatology appt is it a private one? Did your GP refer you?

[ELMAGO_1 in reply to Hidden]

He got me a private appointment. I think the consensus is that first and foremost I have to get my RLS officially diagnosed. I would say if this doesnt work out at the rhematologist or he seems to no little I wil get an appointment with a neurologist.

[Hidden in reply to ELMAGO_1]

Good luck with it hope you get some relief soon.Let us know how your appt goes . X

[Hidden]

You sound from what you are saying your symptoms are, that its RLS you have. Your doctor should know if you have RLS, if they know anything about RLS, just by you telling them what your symptoms are. Have you looked at the criteria for RLS..?? Just so you are sure in your own mind thats what you do have. Have you looked up the symptoms for Fibro..?? I know some people suffer with both RLS and Fibro. If you have a doctor who doesnt know that much about RLS, they can refer you to see a neurologist. If you want to avoid augmentation then look at taking the meds that P1pp1ns has said. Its all trial and error when starting the meds, what works for one doesnt always work for someone else. What someone swears is their magic pill for them isnt always someone else's magic pill.

[ELMAGO_1 in reply to Hidden]

My Doctor seemed to know very very little about RLS. I am adamant what I have is RLS, although no diagnosis has yet been made, everything over here has a bit of a waiting list, and July 17th is as early as i could see the rheumatologist. My Dad says he will make an assessment there an then based on what I tell him of what I have. Im certain its not Fybro though, despite the fact my dad suffered from it. Hopefully I can get started on some meds soon that allow me to relieve symptoms during the day and can get something that allows me to get some sleep.

[Hidden]

Waiting lists are the same in the UK..

[Hidden]

Just a tip, I would do a new post/question as replies can get lost when you have lots of them and difficult to follow x

[ELMAGO_1 in reply to Hidden]

Thanks, I will use that from now on, is it possible you can get financial aid for neupro patches in the UK, as I hear they cost a lot?

[Hidden in reply to ELMAGO_1]

Yes normal prescription cost.If you are prescribed them by the private rheumatologist you would have to pay expensive orivate prescription costs so get him to ask your GP to prescribe them.

[ELMAGO_1 in reply to Hidden]

I will get him to get my GP to prescribe them hopefully. Would the patches be a good place to start for me do you think? If something could relieve my symptoms during the day and I found a reasonable sleeping aid I would be set. Here's hoping. Really don't want to be unable to start my university course because of all this. This involves me re-locating from Ireland to England so could be difficult if things aren't going well for me. Thanks for your answers.

[Hidden]

ELMAGO, you should get the patches by prescription from your doctor, They are expensive and some doctors do not like the give them out until you have tried all the other RLS meds. Myself, i have never has any problems getting any med prescribed for me by my doctors including the patch when i was using it.

[ELMAGO_1 in reply to Hidden]

Would the patch me a good place to start for me in terms of meds? Can they cause augmentation? Do they relieve your symptoms during the day? Thanks for your answers, all really appreciated.

[Hidden]

You are doing the right thing by learning as much as you can before your appt.I have never seen a specialist always had treatment just from my GP.One thing to bear in mind though it could be an underlying causing your symptoms .If this is the case it is called secondary restless legs rather than primary x

[ELMAGO_1 in reply to Hidden]

Does this mean if the under-lying condition is detected and maybe addressed that my RLS could be relieved? Will the rhumotologist have to check me for this? To detect any under-lying reasons perhaps? before making an assessment. Can these reasons, be allergies?

[Hidden in reply to ELMAGO_1]

Good link from Elisse.I know pregnancy can cause secondary legs and so can low ferratin iron. As for the tests well pregmancy obvious! Ferratin iron is a blood test, maybe ypur GP could test this while you are waiting for your hospital appt .I have not heard anyone say allergies causes rls x

[Hidden in reply to ELMAGO_1]

ELMAGO, what do you take for your allergies?

[Hidden]

This link may help you understand more about the basics of RLS, it also mentions Secondary RLS, underlying condtions which may be the reason of your RLS.

nhs.uk/conditions/Restless-...

[bugsymoran]

I am sorry you are you are having so much pain with your legs etc I have had this since I was in my twenties I am now sixty severn and many nights I could. throw myself under a bus.I have just started taking Pregabaline which seems to be working after many many other tablets so keeping my fingers crossed

[kennethcooke]

I cured RLS by placing a bar of soap under my bed sheet and being in contact with it. This may sound silly but, it worked for me and it is no big deal, so give it a try. forget medications.

[Rubylane25]

The most common in Canada is Mirapex and requip. The problem with RLS is that you have to costco it befor it sets in because once it starts it doesn't seem to matter how much med. you take it doesn't go away. I have it all over my body and take one mirapex around four in the afternoon and one about 8:pm. Maybe they could suggest taking it earlier for you since yours seems to be all day. There is also gabapentin which didn't work for me. My doctor told me that each day you have to cost hit before it sets in so maybe they will recommend one in the morning, one at noon and one early evening?

Unfortunately it IS a life altering condition which so many I n the medical field don't take seriously. When you don't sleep and cannot function it can become very depressing which then adds on a second problem. In Canada they also treat it with the fentanyl patch, which is a narcotic. Canada is pretty open about prescription narcotics but heard it isn't so simple in the UK. Good luck!

[Margaretcj]

PLEASE READ Hi l have never done this before but if l can try & help l will l have had restless legs my mum & my gran had it but l have been really bad for years had to exercise my legs till l was exhausted l'm reading some people on this they are not the symptoms l have it comes when l tiered can even come in the day as l worked nights had it even in my arms but l was lucky enough to have a doctor in our go's that studies it so l was put on a drug called Ropinarole it is used for parkinsons but is not related to RLS but it's because they are both related to nerves there comes side affects with it so read it before taken try & keep on as low as you can l'v been on it for years & couldent tell you the relief l get l still have it now & then but nothing like l did have a chat with your gp l hope it gives you some relief try let me know how it goes if you do it good luck

[Juliewils1965]

Hiya I've got restless legs to I'm on ropinrole one at nite and two every morning you sound sick of situation like me but a physio has just told me it's off my back why legs so bad and being unable to walk and calves so painful now affecting my feet and ankles your so young Hun hope you get some relieve xxx