Kicking and worried about my job

[40yearsRLS]

3 hours sleep Monday night, according to fitbit, and not much better last night. On a final warning at work and have a big meeting to decide my fate. They know about my RLS, and Googled it but I doubt if they understand it. Might be joining the unemployed next week, after 11 years in this job! Scary!

[Hidden]

Sorry to hear your job is on the line, i have heard of many stories like yours. I am asking if you are kicking in the night while you are asleep..? As that is PLMD, which happens while you are asleep not awake. RLS stops you from sleeping or can wake you up. Do you think you have both..

[40yearsRLS in reply to Hidden]

I have both, I get it all over my body on really bad nights, my whole torso and in my neck so my arms fly about as well. I didn't know about PLMD, that's interesting. It's definitely got worse, I'm taking Ropinarole I'm supposed to be on 4mg a day but I do 8-10. I'm trying to cut down and eventually try different things that people have suggested on this site. It's so painful as well, I just walk around the house trying to kick it out. It always starts the minute I sit down and try to relax or wakes me up when I am asleep.

[Hidden in reply to 40yearsRLS]

Oh noooo, you are taking 8-10mgs. that is way way to high a dose, and beyond the dose for RLS. no wonder you are having problems sleeping. Look at what others have gone through or going through on here with taking a too high dose, its called augmentation. Nothing else will work what ever you take, until you get right off the Ropinerole. Please put into search RLS and Augmentation you will find many posts on that subject and what people did/doing to wean off theirs.

[Joolsg]

I agree 1000% with Elisse.

If in UK, speak to GP tomorrow and get a sick note and show GP all articles on Augmentation.

Legally, you may have a case against manufacturers of Ropinirole as it causes Augmentation and the drug companies know this but haven’t advised doctors or patients. If you’re about to lose your job you’ll have a good case against drug company.

The maximum dose is 1mg and higher doses lead to RLS 24/7.

You have to reduce dose slowly by 0.5 mg a week or every 2 weeks and you’ll need an opioid like tramadol to help.

Ask your employer to read this website and the posts on Augmentation . Involve HR department.

You have to let them know how serious this disease is and how the drug has turned rogue on you ( and thousands of others).

Once off Ropinirole, pregabalin is a much better optyand would allow you sleep and to keep your job.

Knowledge is power for you. Do not give in- see GP & explain withdrawal from Ropinirole is worse than heroin or crystal meth withdrawal and it’s not your fault. GP put you on this but it’s made RLS worse and the drug company should be notifying all GPs and neurologists to help patients in your situation.

I’m so angry on your behalf.

[40yearsRLS in reply to Joolsg]

This is seriously great advice from you and Elisse, at first about 12 years ago when I first started taking it I thought I'd found heaven on earth. Me and my mum used to fight over tablets so we could sleep. She would ring me up and literally beg me if she ran out. I had no idea I would end up with worse symptoms in the long term, and feel guilty now she's gone that I held onto my tablets like gold dust. My sister worked for a pharmaceutical company and found out about Requip, as it was then known. Apparently there were an awful lot of people in the USA who were suffering. Doctors were reluctant to give it out at first, they kept moaning about the cost. It got cheaper when it was made by other companies and renamed. Taken 6mg tonight, hoping that does the trick.

[Joolsg in reply to 40yearsRLS]

I know exactly what you are talking about. I was on Requip for 14/15 years and thought it was heaven at first. No RLS and sleep. I lived in dread that they would stop making it.

Like you I increased the dose ( to 4 mg) but it made it worse and soon I had RLS all the time and couldn’t sit still anywhere.

Withdrawal was hell- BUT I now get decent sleep and no RLS in the day.

It’s easier here in the UK because opioids are available to us ( it’s still tough to persuade doctors to prescribe them). You need to find a doctor or specialist who can help you get off Ropinirole with the help of an opioid like tramadol.

Where in US are you? Nightdancer has a list of specialists in USA and she can give you details.

Bganim went through withdrawal last year: she’s in NE USA so have a look at her posts to see how she got through withdrawal and is now doing well on tramadol and Lyrica.

I’m sending positive thoughts your way and wish you strength to get off The Ropinirole.

[40yearsRLS in reply to Joolsg]

I'm in the Uk, my doctors have been reluctant to help in any way, I had to battle with them to get Requip, I will sort this out, fed up of the brush off, apologies for not getting back to people like you giving good advice. I just posted a while ago, explaining my state of mind 😭I'm going to make sure I get online more to keep up with the site. Best wishes x

[jan_ET in reply to Joolsg]

hi jools im in real trouble and need your advice - i have dropped one amytryptoline and to do this I have added 1 x cogentin and 1 x tramadol as well as the Now- 2 x Amyptryptoline & 1 x placil or anafranil - I am wondering if maybe Tramadol abd Codeine dont mix? any ideas? thanks - Jan

[Joolsg in reply to jan_ET]

Hi Jan,

Why are you taking 3 different anti depressants? Amitriptyline, anafranil and placil all make RLS worse.

Tramadol and codeine are both opioids so you shouldn’t take both.

If you need an anti depressant, Trazodone doesn’t make RLS worse.

Tramadol is useful for withdrawal from dopamine agonists. Have you started to reduce Sifrol yet? That is when you’ll need Tramadol.

Jools

[Joolsg in reply to jan_ET]

Jan,

In Australia, you can get Wellbutrin ( Brupopian). This anti depressant doesn’t make RLS worse .

Amitriptyline and Anafranil (placil) make RLS worse so DO NOT substitute placil for amitriptyline. You need to be getting off amitriptyline.

Ask your doctor to prescribe Wellbutrin or Trazodone as an anti depressant.

Once you’re off the dodgy anti depressants, then you can see how your RLS is.

If it settles, great. If it’s still getting worse and you are in Augmentation, then you can start reducing Sifrol.

That’s when you’ll need Tramadol.

Jools

[jan_ET in reply to Joolsg]

thanks jools I have been on two antidepressants for years 2 x amytryptaline and 2 x placil which is anafronil then when i added to these a sleeping tablet Imovane thats when the Rls really kicked in / nightmare ever since. Now off 1x amytryptoline but have to do that first then sifrol - Sifrol will be the hardest though and I am planning to be in hospital for that one - Jan

[Joolsg in reply to jan_ET]

You may not need to get off Sifrol Jan.

Once off those two anti depressants, you may find your RLS settles down as they are known culprits for making RLS really bad.

I wish you luck getting off both.

jools

[jan_ET in reply to Joolsg]

ok im a bit confused so i need to get off both antidepressants - i know that and go onto wellbutin but I was of the understanding that I was augmenting on the sifrol so need to cease that after the Amitryptoline and 1 x Placil(Anafranil) and maybe go on Pregabalin(Lyrica) if need be. Its certainly going to be a fine juggling act I can see. The side effects of Tramadol and Codeine are knocking me around so am going to use as little as possible. Jools I so appreciate your input on this forum you seem to be the voice of reason and I have come to totally trust your advice so thank you and everything I learn I take back to my Doctor who has taken a keen interest in this whole saga of mine and I know that she is one doctor who has learned a lot re RLS and so will be better armed to help someone with it. If it wasnt for this forum I would have ended up on sick leave in hospital but I am very empowered now to keep going and be a source of comfort to others and really want to start a support group here but so far Im tge only member lol!!! have just joined the Australian forum so might find someone else - Jan 😢🙏

[Joolsg in reply to jan_ET]

Hi Jan,

I'm sorry to have confused you.

I am aware of a few people who have stopped anti depressants , like amitriptyline, and find their RLS then settles down.

However I don't think that will happen for you because your dose of Sifrol is so high. (max recommended starting dose is now just 1mg)

Once off the anti depressants, start reducing Sifrol by 1mg every 2 weeks. The Tramadol will help at that stage. Don't take codeine as well - that's too many opioids.

As your GP is being so helpful, refer her to Dr Buchfuhrer's site in California. She will find it very informative. Link below.

rlshelp.org/rlsrx.htm

He has also written a few medical books on RLS which you might persuade her to buy for her office. You can get them second hand on Amazon. The best one is "Clinical Management of RLS" by Drs Lee, Buchfuhrer, Allen & Hening.

Well done for joining the Australian forum and I hope you find others locally to join your support Group- brilliant idea.

Take care

Jools

[jan_ET in reply to Joolsg]

thanks so much Jools

[LotteM in reply to Joolsg]

Thanks for writing that, jools! I also thought that we should recommend helpful doctors to buu the Lee,Buchfuher et al book on Clinical Mgmt of RLS; the book is not an expensive one and very well structured, as a result it is very easy to find the relevant info and very well explained in amazingly few words. Thus, spread the word to helpful doctors!

[Kaarina Administrator]

This link may be of help to you: sleepreviewmag.com/2015/02/...

Pippins2 wrote a great post on Augmentation some months ago: healthunlocked.com/rlsuk/po... which may also be of help to you.

[jan_ET in reply to Kaarina]

thanks so much Kaarina I have taken all this on board I really appreciate your help - no wonder I have RLS 😢

[40yearsRLS in reply to Kaarina]

Thank you Karina, I'm working my way through all the advice and links 🙏🏼

[Hishoney]

I’m so sorry. Why are they thinking about letting you go? Because you’re not sleeping? How about taking a note to them from your doctor? Here in the USA, they can’t fire you if you have a medical condition. They would give you a leave of absence, but you could go right back to your job when you feel better.

Another thing, I truly believe that all things work together for good. If they do fire you, maybe there’s something better waiting for you. That has happened to me several times.

I use VIVOFIT to track my sleep. Have you tried melatonin? It’s an OTC sleep aid and you can even get them in chewable jellies. I use melatonin every night cause I never got a good night’s sleep before. Now I do, and highly recommend the melatonin. Just be careful to take the amount they say, or you’ll be sleeping at work!

Keep in touch. I’d like to see how you’re doing!

[Hishoney]

Can they actually fire you for being sick? In the US, that’s totally illegal. They have to give you sick time off. I have a feeling you’re not from the US though, am I right? But don’t you have any recourse for being sick without them firing you? Do you have any disability insurance? I’m well aware of the laws here because I’ve had to fight the system. But I made it, and it’s been 12 years ago now.

I honestly wish you the very best wishes and peace in your worries!

Nancy

[40yearsRLS in reply to Hishoney]

Yes I'm in the uk, yes they can fire me if I'm not fit for work. I'm getting my case together to try and fight them, I really appreciate your good wishes, I don't have any disability insurance as it's not seen as a disability in the uk. I wish it was. They haven't got a clue about the symptoms, they googled it and said why haven't I mentioned it before. I said I've been telling them for years but nobody listened to me. Every time I mentioned RLS they just ignored it. Living with constant brain fog can make you very complacent. I don't have the energy to think straight at the best of times. Jools and so many of you have been fab, I will keep you updated! 😘

[rdbyam]

Maybe have to use Family Leave Act to get help from a neurologist to try to save your job