Not living with RLS: Hi I'm writing... - Restless Legs Syn...

Restless Legs Syndrome
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Not living with RLS

Kingjo
Kingjo
47 Replies

Hi

I'm writing this as I have now been awake for 36 straight hours. I'm beside myself due to my RLS and PLM.

Last night after my partner had gone to bed I tried to sleep, but was unable too. The nasty sensation in my thighs, my shoulders and my feet had me walking on my treadmill for 3 hours, I cooked a chilli from scratch, I listened to 5 TED talks and some YouTube videos of RLS sufferers. I stood in the garden in the dark and rain for ages. I punch my legs, stamp my legs, just for a few seconds relief. But there is no relief. It's a lonely life being a "night walker".

I had run out of ropinerole and the chemist isn't open until tomorrow so I can't collect until then. Last night I took 120mg codeine, 1000mg paracetamol, 60mg tramadol, none of this helped. It's a living hell. I can't function without ropinerole. Sleep deprivation at its best.

My partner went out this morning to get me a TENS machine, I've just tried it and it made the sensations even worse.

What's worse is I have to go out to meet my partner's parents today, I'm shatterd, emotional and I am terrified I won't be able to sit at the restaurant table. I also have anxiety with knowing that this will carry on for at least another 24 hours until I can pick up my prescription. I also have work tomorrow. I work full time in a highly pressurised job, with lots of international travel. Another nightmare (travel).

I'm at the end of my tether. I would do a video, but my speech is slurred and I look awful!

Jo

47 Replies
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Lapsedrunner

Oh Jo, poor you.

Can you tell us what dose of Ropinirole you take and for how long you have taken it? You may be encountering something called “augmentation”, there’s a pinned post about it.

Do you take any other medication regularly? Some other meds eg some antidepressants/antihistamines can make RLS worse.

I’m sure life can be better for you.

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blokie
blokie
in reply to Lapsedrunner

You have my sympathy, for the last 9 months I’ve also been a night walker and feel drained by the morning.

I take 3 tramadol and 2 Anadin within a 30 minute window and after my Rls has all but gone and I can get some sleep .

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nightdancer

Augmentation happens, in the context of RLS, when you are taking TOO high of a dose. She has said she is out of her regular med, Ropinerole, so her RLS is going to be worse, with no Ropinerole for a couple of days. THAT is not augmentation. i think it i pretty simple, she is going to feel better once she gets her prescription.

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Lapsedrunner

You may well be right but I think we’ll all agree that making Jo aware of augmentation is the right thing to do.

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Elisse2

But not to tell them they are having augmentation and should wean off it. Its jumping the gun. Yes all those who take any of the DA' should be made aware of augmentation, that i agree with.

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Lapsedrunner

Is this to me Elisse2? I only asked Jo to look at the possibility, and asked about dosage.

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Elisse2

It was meant for those who were saying it was augmentation. Sorry it went under your comment.

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Elisse2

So sorry you are suffering so badly, nothing worse than running out of a med, just stopping a med like Ropinerole, because you ran out if, it sound like you are having withdrawals. But i would have thought the codeine and the tramadol might have helped a bit, as tramadol is used then weaning OFF Ropinerole. But seems not in your case of not having taking any Ropinerole. I would call in sick from work tomorrow if it was me. TENS never helped my RLS either. I have nothing i can suggest for you, i can only hope you get through meeting your partners parents, do they know you suffer with RLS .? I hope so. Another thing, why you ran out of Ropinerole,? You just forgot to get anymore,?

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involuntarydancer

That sounds like a dreadful situation - unfortunately one that many, many posters on here have experienced and will be able to relate to. It is particularly difficult when you are trying to carry on with a pressurised full time job. I am not sure how you are managing that. You have my sympathies. I hope the meeting with your partner's parents is not too traumatic.

It really does sound as though your symptoms are being exacerbated by the ropinerole in a process known as augmentation (as lapsedrunner has suggested). Once in augmentation, none of the usual treatments will afford much relief - as you found with the codeine, tramadol and paracetemol. A strong opioid (eg 30mg oxycodone) may help but really the only long term solution is to wean gradually off the ropinerole (with the help of opioids if you can get a prescription for them) and look for an alternative treatment once the drug is washed out of your system. The weaning process is almost always extremely difficult (although somewhat alleviated if opioids can be accessed) and it is likely that you would need to arrange for the end period to coincide with a period of leave from work.

The other thing to look out for is your serum ferritin. This should be tested by your GP (make sure to get the actual figure - not just that you are 'normal') and if you are under 100 you should start an iron supplement. Raising iron helps with symptoms in at least 50% of sufferers. There is some evidence that sufferers with lower iron levels are more susceptible to augmentation. Intravenous iron is now considered a valid first line treatment for RLS by leading experts.

You may find you experience resistance from you GP to any suggestion of discontinuing the ropinerole and it would be a good idea to print the latest research of the International RLS Study Group which sets out recommendations for the treatment of RLS by European and US experts in the treatment of RLS. A google search should take you to the most recent publishsed papers.

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Wanman4

I take 5 mg of oxycodone at 6 pm and 20 mg at 10 pm, with another 5 mg around 4 am. I also take 10 mg of Felexiril to help with insomnia, along with 1 mg of klonopine. Nothing else worked for me and I have tried all the other recommended treatment. Also, add Magnesium Theronate to your pm protocol. Good luck!

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Wajidali25

Hi,

I feel sorry for your condition.

Can you take bromazepam 3mg it will help ,

God bles syou

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Joolsg

Oh Jo- I really feel for you. Stopping Ropinirole like that means you’ve gone straight into severe dopamine agonist withdrawal- you’ll get no sleep at all! Your RLS will be very intense and 24/7. Even tramadol won’t help much due to such a drop in Ropinirole dose.

You need to get back on it asap but do be aware of what others have said about augmentation so you can decide whether you wish to stay on Ropinirole long term or switch to an alternative.

I hope you get your Ropinirole prescription asap. The fact you say you have a lot of international travel and that causes you problems makes me think the Ropinirole is not working fully any more so you do need to consider getting off it and onto something that will give you better coverage. You’ll need to plan the withdrawal carefully so you can take 2/3 weeks off. You are experiencing withdrawal now and that’s what it will be like if you decide to get off it completely. You can’t work- and you’ll need someone to watch out for you while you go through it.

Get your Ropinirole tomorrow morning and take it straight away. Set a reminder so you don’t run out again.

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Pippins2

Sadly sudden withdrawal from a Dopamine agonists almost always results in these extremely severe symptoms. Same thing happened to me whilst abroad on holiday absolutely hell. Keep on with the Codeine and Tramadol even though they aren't really helping as could be even worse without if that's even possible. After I went just over 40 hours without sleep I went to the emergency dept and was knocked out with Morphine injections.

I honesty don't think you should work tomorrow it would be dangerous unless you sleep beforehand. Hopefully you will get your Ropinerole tomorrow and after a couple of hours will sleep.

So sorry you are going through this x

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Pippins2

Just a thought if you are in the UK you could ring 111 try for out of hours GP appointment to get a prescription x

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Manerva

Just wrote you a long post and lost it all!

So please forgive bullet points and lack of explanations. This is a very potted version of what I wrote. It is suggestions not directions.

- listen to others advice, take Ropinirole as normal tomorrow, then wean off it, slowly. You are suffering "rebound" and/or augmentation.

- keep an emergency reserve of Ropinirole. Still get your next prescription without using your reserve. Note in calendar - don't forget to order and collect prescription before weekend.

- always keep a copy of your prescription, find out which emergency pharmacies are open weekends.

- Put tablets in a pill box with days marked.

Bullet points sounds patronising not meant to be.

- take tablets same time every day, set an alarm.

- when travelling take extra tablets with you on your person, not in hold luggage.

RLS is a circadian disorder. so -

- go to bed same time every day. If going abroad a couple of nights go to bed usual time in UK NOT local time. Later if going east, earlier if going west. If abroad more than 2 nights, slowly adjust bedtime to local time in half hour steps.

- Do NOT watch YouTube on TV, Laptop or any other backlit screen at night. Or do anything on these devices. The light is inhibiting the secretion of Melatonin and in effect is telling your brain it's daytime and you should be awake.

- keep artificial lighting dim in the evening.

- try to get natural daylight in the late morning, go outside or sit near a window.

Stress = insomnia, insomnia = stress

- learn and practice some stress management strategies e.g. mindfulness,

- consider retiring early if you can

My dad worked very hard trying to prepare for his retirement at 65. He did retire at 65 but his health was so poor he didn't live the life he'd been working for.

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Elisse2

Sorry i HAVE to ask the other members why you think the poster is suffering with augmentation, do we know for sure they are,,? All i read is them saying they had run out of ropinerole hence having a tough time with their RLS. they are having extreme withdrawals,

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Manerva
Manerva
in reply to Elisse2

I agree it does appear that what Jo is describing is wihdrawal symptoms, rather than augmentation. However, for me, the thought that I was so dependent on Pramipxole that simply missing a dose had such severe effects within hours was one of the factors that drove me to withdraw from it.

The other thing for me is that by the time I got to that point I was suffering some degree of augmentation anyway, but I hadnt been warned about it and didn't knlow that it was that. Had never heard of it never mind knowing that something could be done about it.

It may be that Jo has simply missed a dose and after getting hold of some more tablets may take them and return to whatever is "normal". If what's normal is OK then Jo has a choice to carry on with the Ropinirole or withdraw from it.

However, we don't know what normal is and like I was, Jo may be ignorant about augmentation, so I think it's always a good idea to mention it to people. It was thanks to this community that I found out.

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Rivoli
Rivoli
in reply to Manerva

I’d never heard of augmentation. I’m certainly learning a lot since joining this group.

It’s 1am & I’ve just done some ironing as my legs won’t let me settle down!!

Have any of you ever experienced movements in the calf muscles? It’s like something from a horror movie it’s like there’s something crawling under my skin it really is horrible.

Well time to find something else to do!!

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Manerva
Manerva
in reply to Rivoli

Check this link out to see if it fits your experience

medicalnewstoday.com/articles/320388.php

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Rivoli
Rivoli
in reply to Manerva

Thks not able to connect to the link sorry.

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Manerva
Manerva
in reply to Manerva

sorry about that, try this

medicalnewstoday.com/articl...

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oldfidgetlegs

I had really bad calf muscle pain a couple of days ago - I get it there from time to time on top of regular RLS symptoms - and when my partner massaged them I nearly stuck to the ceiling! The pain was incredible, really intense deep in my calves, then calmed down a bit after about an hour. I'm trying to wean myself off Ropinirole which I was taking 1mg lunch time and 2mg evening, starting to leave out the lunch time dose which is OK as long as I remain active. I bake, garden, iron, clean ... anything except sitting and like many others I dread travelling and social situations. We booked our family Christmas lunch out yesterday and I'm already dreading that! I also take Gabapentin 600mgs lunch time and 900mgs nights plus 10mgs Amitriptyline which means I usually get 4 or 5 hours continuous sleep. People who have no experience or knowledge of RLS have no idea how debilitating it is and I truly sympathise with everybody on this extremely empathetic and compassionate forum. I have found the information very helpful and am now taking iron supplement which I had to inform my GP about! Thank you to all for your wisdom, advice and support.

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Rivoli

I’ve just read a few interesting articles in a magazine which I’ll share later as right now I’m at the eye hospital!!

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nightdancer
nightdancer
in reply to Elisse2

Like I said in earlier comments. There was no reason for augmentation to come up on this thread, specifically to the original posters issue. Her main issue was that she ran out of her regular RLS meds, as in Ropinerole. As others have said, and you and me, :) , As soon as she gets her meds the withdrawals will stop, this is a perfect example of WHY dopamine meds cannot and should not be stopped cold. Augmentation is another whole thing as we know. :)

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nightdancer

As far as I can see here. Kingjo ran out of regular meds, she is going thru dopamine withdrawal, so RLS will be worse until she gets her meds filled. THAT is not augmentation, as used in the context of RLS. :)

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graciebes

Hi, i have sympathy with you. We went to New Zealand an after a one night stopover in Madrid had our backpack stolen with our medication in. The farmacy wouldnt isue me with my Pramipexol because i dint have a prescription for them, which was stolen also. So i suffered a month of hell sat every night rocking and crying in a chair. I now have tablets in my handbag and make sure i have plenty, if that ever happens again.

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Shumbah

Hi Kingjo

I have recently been through a really rough patch that was due to A rare side effect medication that was prescribed for another condition.

The only things that helped during these months were

4 hot water bottles or heat packs in bed and during the days when sitting .

Hot bath or spa

A puff or 2 marijuana

Marijuana oil, spray , edibles take longer

Lavender oil direct onto skin

Standing on a vibration machine

I tried tens machine placed on either side of the Lower spine NOT on the legs

My son is getting good results from ingesting lavender capsule

Some people get good results from Passionflower capsules

I now take 15 mg oxy 2 hours slow release before bedtime

Ask 7.5 to 10 mg quick release OxyContin when out for dinner and the theatre etc

Feeling for you

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Manerva
Manerva
in reply to Shumbah

Kingjo suffering withdrawal symptoms because of running out of Ropinirole is one thing. Maybe normally the Ropinirole is just fine.

A bit presumptious to think Kingjo is also suffering augmentation when, actually that's not the case.

Without reading the whole post and making inappropriate comments about opiates, I think is a bit irresponsible.

vox.com/policy-and-politics...

latimes.com/projects/oxycon...

Opiates can be appropriate for someone with "Refractory" RLS , but in this post, there is not even the remotest indication of this.

ncbi.nlm.nih.gov/pubmed/293...

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Not-methadone-addict

Hi I completely agree with Manerva. Assumptions are not what is needed at present. Kingjo mentions nothing in her post indicating augmentation but rather straight up withdrawal. We all should know better than to be suggesting she is suffering augmentation when we know her body is suffering because it’s source of dopamine has just been suddenly stripped away. In no way is it currently helpful to be discussing augmentation, opioids, even her ferritin level without helping her get through the here and now of obvious withdrawal. Kingjo if you’re still with us don’t worry about all this extraneous information bombarding your poor sleep deprived brain but focus on how you can return to taking your ropinerole as soon as possible. This is not the time for an information overload. Please, I hope you’re ok and if you can let us know how you are doing. I do very much agree, if at all possible, take a sick day from work. The stress is just further exacerbating your withdrawal symptoms. Is there any way to postpone meeting your partner’s parents? Another stressor. The best thing you could possibly do for yourself is to get your ropinerole. I’m not sure but is emergency or urgent care a possibility? Again, please let us know you’re ok.

My thoughts are very much with you.

Sus

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Elisse2

This is exactly what i said in my first comment, that Jo was suffering withdrawals. IF she is suffering with augmentation that can be dealt with once she is back on the ropinerole. No one knows if she is having augmentation at this time.

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nightdancer
nightdancer
in reply to Elisse2

exactly. You said it first, then many others agreed, some started talking about augmentation, and in this situation, that was not the issue.

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Not-methadone-addict

Sorry not to have replied sooner. Should have said I agreed with you as well. You made the point very well and I cannot understand why others suddenly jumped on augmentation. Sorry not to have included you Elisse2 in my post. Poor oversight on my part. Many apologies 😔

Sus

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Elisse2

No problem, i was agreeing with what you said. I got very frustrated on why some members were saying she was augmenting , telling her she needed to wean off her med, when all i saw was a lady who was suffering badly from withdrawals, because she had run out of her ropinerole. I really hope she comes back on to let us know how she is now, IF she says her ropinerole doesnt seem to be working , THEN we can advise her on what to do next. :)

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Not-methadone-addict

Yup, agreed. Hope all the augmentation talk didn’t scare her away and she does let us know how she is now. I always worry.

Sus

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Hoochybaby

My heart goes out yo you I know the hell and torture that rls brings . I felt suicidle at times but stick with it there us a lot of help out there and I've posted before these things tend to hold in cycles not much consulation at the time I know but people on this site are a big help stay strong

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amdrew_m

Nightmare Jo! I had a similar situation when I forgot to pack the Ropinerole for a night away... it was supposed to be a pleasant family weekend, we drove 100 plus miles and I realised I'd forgotten the medication. Didn't sleep a wink that night and it put a downer on the whole weekend. I'm taking 0.5mg at 8.30pm that usually does the trick although if I wake around 4ish I can feel the Ropinerole wearing off and it's a battle to get back to sleep... I'm usually up by 6ish. Not sure what I'll do if the augmentation hits/gets worse as I don't want to increase my current dose... Another time I think I forgot to take the med was after a very heavy night out... slept like a baby although I wouldn't recommend it as alternative therapy... my hangover lasted much of the next day :(

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Blessings123

I am in the United States and don’t know how things work in the UK. But my suggestion here would be to go to your nearest emergency room and asked them to get you some carryover ropinirole immediately.

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Marvene1942

Hi Jo by chance do you live in California? I went to Dr. Buchfurer and he has helped me. I do not suffer with RSL anymore. He put me on a opiate to help me withdraw ,Prampexole. I can sleep now and it is wonderful. The Doctor is in Downey, Ca.

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FLAME43

oh my darling Kingjo, i can relate to your nightmare, havilng experienced that long haul agony, i reduced my prempexole to two a day, and take 2 dhydrocediene three times a day with my one pexole one morning and one evening, and it really gives me great relief, (some days i dont even have twitches)a sleeping pill in the evening and i have peaceful sleep, though i have to have afternoon naps (I am 76) i would do it all, for the escape i get from RLS. i hope you find a similar solution soon love Garnny Phyl.

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Wanman4

Read this study for treatment recommends, it saved my life!

mayoclinicproceedings.org/a...

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Elisse2

Hi Kingjo. I am hoping you got your ropinerole this morning have taken your dose and was able to get some sleep. Could you please come back on here to let us know how you are. :)

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jjyankee

this is so awful- I take 50mg of tramadol and it stops my horrible RLS. I'd tried many meds and it's the only thing that has worked. Please be very careful about what you're mixing together- hope you get your medication soon. So sorry.

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Muftah36

I feel your pain . I think the first thing I did when I realized how bad this condition is , after having it for occasionally for several was to research possible treatments and I ended up on an anti inflammatory diet. It was difficult but much easier than enduring the torture of RLS. I am finding triggers That for different people , really makes a difference. It seems to vary for some , but for me it’s caffeine, alcohol , chocolate and some others. I also went gluten and dAiry free. Sounds awful but it’s with it .

Tens made it worse, hot baths helped for a while . I had to get off the AP drugs and am now on codeine and Tramadol which is keeping it at bay . There is light at the end of the tunnel . Good luck with your journey .

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Tennwalker1

Oh my Gosh, I'm so sorry. My heart aches for you. I say this with tears in my eyes. I weaned off pramipexole... it took 5 mos. Never ever felt that way in my life. Please take care of yourself. There are a lot of very knowledgeable people on this form that will be able to help you out with what your steps should be to get over this situation. I wish I had some words of wisdom for you . They are so much better, they've been at this for a much longer time than myself. Take care and God bless. I will pray for you sweetie.

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BromazepamBrother

I hate to say this but I was on Tylenol 3 and I would take 5 every 4 hours for about a year as I was being treated for cancer and when I got through my treatment I happen to meet someone who worked as a pharmacy technician and she was stealing the expired medicine and giving me Oxycodone 10mg tablets 4 months and once I realized I had to stop and could not afford it anymore I had to quit cold turkey and that's when the restless legs kicked in, I tried everything from using the TENS machine which worked the best for me two punching my legs and kicking my legs walking at all hours of the night and it only occurred or bothered me when I was trying to sleep or through the dark hours of the day or should I say night the next thing I figured I had to do was get on methadone to manage my opiate addiction and coming off that was ten times worse as I stopped cold turkey. All I can say is I tried Gabapentin Valium and everything from running to jogging jumping kicking and the only thing that work for me was the TENS machine I went through this routine night after night and taking the opiates cold turkey took me two months just to get rid of the restless legs and now a year later I'm still stuck dealing with severe depression to where I feel suicidal most times and don't see much point or enjoyment in life anymore but I keep pushing on for those I love and I don't recommend anyone ever using an opiate painkiller unless taken as prescribed and for a short of time as possible just to let you know and opiate whether it's opium or a synthetic man-made opiate they are both basically just different strengths of heroin you could call it. Methadone at the dose I was at when I was at my highest was 240 mg daily and that is multiple times stronger then Pure Heroine and takes a lot longer 2 withdrawal from then heroin as it is stored in your body's body cells and tissues and due to its longer half-life the elimination. Is way longer and I don't suggest anybody ever go on methadone, and the only people you will ever hear positive things said about methadone are from the people that are on it, ask somebody that has quit methadone what they recommend and they will tell you the same thing it destroys you! Good luck with your search and I just want to say get off the opiates if you can and use any method that is natural and that works, do not substitute it for another addictive drug because then you just have a different issue to face it is hard but you can do it! I wish I could offer you more than that but sometimes life sucks and that's the way God made it, we have bad days but the bad days make us enjoy the good ones even more so God bless you & pray for relief & cure. If you cannot put up with zero opiates for at least two months then your only other option is to find a doctor that will carry you on opiates for the rest of your life and as you build up a tolerance you will need more and more opiate and eventually you will hit a ceiling where there will never be enough opiate available for the doctor to prescribe or a pharmacy willing to fill the prescription because they can't feel a prescription of 5,000 Tylenol 3 or what have you that's just an example but if you can get enough opiates to keep it at Bay I pray your doctor never cuts you off or moves or quits because cold turkey is a lot worse than slowly weaning yourself down under a doctor's supervision. A doctor can offer other suggestions and medicines whereas if they kick you for opiate shopping then you are up the creek without a paddle. If you are honest with your doctor they will work with you if they find you are lying or trying to get extra addictive medicine they will not be willing or very willing to help you any further and I know this first-hand. I used to inject Dilaudid AKA hydromorphone in order to fulfill my need to remain functional in my life and no longer got a high from them and the only thing stronger I could find were fentanyl patches and they even didn't do all that much. At age 14 I got addicted to benzodiazepines and then at 19 it was the opiates and now I'm finally getting control back in my three10mg Valium daily and I had to go back on the methadone but only at 20 mg per day and I'm stepping down 1 mg per month because literally I had a suicide kit ready to go and a plan and a note that's how bad the restless legs and withdrawal was and I hope you don't get to that point because everybody is worth fighting for. Stay tuff. You can do what you want, just put your mind to it & refuse to give in. Opiates for some may be an option or any dopamine boosting drugs, I can't remember what the names were for them though I just recall they were for multiple sclerosis or something similar but my doctor refuse to prescribe them because they are considered heavy-duty drugs that are only used in serious cases not these types of withdrawal cases and I believe it's because once you boost the dopamine to a very high level you're in even more deeper water when you have to stop the medicine or if you have to stop. Just do what's best for you and your family and do what your conscience tells you not what you want but what you know is right.

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Sara_2611

Hello Kingjo I remember when I very first noticed it when I lived in Oldham nin the mid noughties. I suddenly started kicking about in bed & accidentally kicked my then partner who I was living with at the time -needless to say he was annoyed

Every evening & night times this was going on. When I finally went to the doctor & he diagnosed RLS, & has given me Balneum Cream & never looked back since

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Kaarina
KaarinaAdministrator

Hi Kingjo,

This thread has become rather long with all the replies and some members perhaps not realising that you had unfortunately run out of your Ropinirole medication so that was why you were in such despair.

As Elisse has said we all hope that you have picked up your Ropinirole prescription now and have at last been able to get some sleep. Please let us know how you are.

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