I've had RLS for nearly 20 years with the last 9 on requip. I've now come off that - about 3 months ago and am on Gabapentin. I've not been to bed in all that time. I get to doze on the settee sometimes. I no longer pace the floor most of the night as I was when I first came off the requip and am very grateful for that.
All in all I thought I was managing pretty well considering, but now I have it in my arm and all I can do is panic. This I don't know how to cope with.
A doctot once said to me "Well, it's not life threatening is it?"
Am I alone in wishing it were?
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Suberino
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Your post brought me to tears - eloquently expressing the misery and despair of this condition in the face of the callous quip of your medical adviser.
Gabapentin is clearly not working for you. I would say from your post that you need something stronger such as an opioid though you could try pregabalin which works better than gabapentin for some. In my experience rls seems to respond better to a multiplicity of
drugs each at a lower dose than to a single drug at a higher dose so maybe you could consider trying pregabalin and a mild opioid such as tramadol together. Have you had your serum ferritin levels checked? Raising iron can have a beneficial impact on many. Current rls experts recommend getting serum ferritin levels to over 100.
You are currently going through torture (which is also not necessarily life threatening but is a violation of internationally recognized human rights - something your medical adviser might wish to ponder on) and it is not acceptable. There are treatments that can alleviate it - you should not be denied them.
I too came off ropinirole and replaced it with 50mg of Tramadol that worked well for 2 years. I’m now on Pregabalin and can’t believe how good it is. But I’ve been here before with ropinirole so I try not to be complacent. I’m only on 150mg and if there comes a time when it becomes less effective rather than increase the dose I may try and persuade my doctor to prescribe 50mg of Tramadol to support it.
As ID says hopefully keeping the dose low of a combination of drugs may ward off the tolerance we all seem to suffer from eventually.
Read everything you can on the RLS-UK website and go back to your doctor armed with knowledge - far more than he will have!
Thank you Pam and Involuntarydancer. I have only recently found this site and have found it so helpful - a wonderful resource of pooled knowledge. I have already learned a lot. From here I have become aware of the use of opiods. I've not picked up on Pregablin so thank you for that.
At my doctor's surgery it can be difficult to see the same doctor so I've seen three recently. None were aware of augmentation and they only knew about Ropinerole as a possibe drug. As you say, Pam, I went armed with knowledge I had gleaned here and RLS research. It would be impossible for GPs to have detailed knowledge of every condition, so I understand that, but what has frustrated me is the reluctance to refer to someone who does. But at last I do have a referral to a sleep clinic so I can hopefully explore some options with them.
I ought to feel encouraged about the referral, but at the moment I can't get passed this new fear - that my arm is now affected. It is fairly mild but it is pretty much all day. I am 55. I have a long way to go with a progressive condition. Right now everything in me is telling me I can't cope. I know that listening to my fears is unhelpful, but try telling my body that - it's too busy panicking to take anything else in.
I know that the brain is a wonderful thing and I will have to find some way to cope. Sharing it would help but I don't feel as though family and friends are robust enough for me to spill quite how desperate I feel right now. Hence coming here to do so.
If I had been on the Gabapentin longer I would hope that this might be augmentation from that as it seems to have come so quickly - from a couple of twinges to full on. But I've not been on it long enough.
I guess I am realising how much I have coped with the RLS because however bad at night, at least I get the day without it. Losing that feels massive right now. I don't know how to do this.
Oh poor you, I really feel for you. When things are bad it’s hard to see a way through.
And as you say, I can understand why doctors know so little but it’s their reluctance to listen and open their minds regarding this that drives me mad! My son is a vascular surgeon and subscribes to the British Medical Journal - there was recently an article in there about augmentation which I sent to my GP - he had previously said it was all conjecture, no response from him but at least it may have sown some seeds! Sometimes neurologists can be equally ignorant of RLS so it’s up to you to go armed with information- find out as much as you can. On the RLS-Uk website or any PubMed articles you can find. PubMed gives the article some credibility. Read up.
You may still be suffering from lingering effects of the requip withdrawal and gabapentin is obviously doing nothing for you. As we have said there are other medications to try, plus a whole host of other things, iron supplements, magnesium, diet etc. No one size fits all unfortunately.
And I’m conscious I keep banging on about it but I found once the Tramadol stopped working for me I also had it in my arms and that scared me too. I’m now 5 weeks in with Pregabalin and it’s gone. It’s easy for me to preach (having found something that works for now) but I try not to look too far ahead. Find something that works and accept that for now life is good. Although I’m fine at the moment it doesn’t stop me reading up and educating myself about this condition as much as I can. I’ll take what I’ve got now but I want to be prepared. I went into ropinirole with no idea what they were offering me. That won’t happen again.
So please keep in touch and try not to worry. There will be respite from this, you just need to find a medication and maybe make some changes in your lifestyle and things will get better.
HI PAM can you please tell me how you take pregabalin only I have been trying as you know for weeks to wean myself of tramadol, anyone that says tramadol is not addictive is lying, I thought with pregabalin you put a lot of weight on,xxxxconnie
I had no problem at all stopping the Tramadol but I guess I was on a low dose of 50 - 100 mg. It stopped working for me that’s the only reason I stopped.
The doctor put me on Pregabalin, 50mg first night, then 100 and 3 days later 150mg. I only suffer from RLS at night so take the whole dose about 9pm - bed at 10pm. Been on it 6 weeks and all really good.
I was fully aware of the weight gain and it did worry me but to be honest the thought of being able to sleep outweighed the worry about that. I tried to be open minded and positive about the whole experience as I think mindset plays a big part in our RLS.
I eat very healthily, am veggie, take walks every day, rarely drink apart from the occasional glass now and then and after 6 weeks my weight has remained the same. I’d like to lose half a stone but that’s a battle too far at the moment!
All I can say is keep an open, positive mind and give it a try!
Yes I agree with you saying you went into ropinerole with no idea of what was to come. When I think back of how quickly my sleep specialist wrote out that script and handed it to me seemingly unfazed about what he was giving me (maybe he didnt know of the torment that follows) He certainly gave me no indication of what it would do to me when augmenting kicked in . Just wanted to shut me up . I am guessing he has not idea of just how life altering this medication can be. I am paying the consequence of his rather hasty uncaring attitude when he handed me that script. Life has been a roller coaster of torment trying to wean off when it stopped working after a few short months . Totally unprepared for the craziness of weaning off. My RLS even as bad as it was before medication wasnt as bad as this.
Yep, you’re right. I really think they have no idea. It’s needs to printed boldly on the warnings - not just what augmentation is but how difficult it is to withdraw. We all read about the horrific stories of withdrawal from heroine but this doesn’t get a mention.
When I went back to my doctor for help to come off he had no idea what I meant or what to do.
Sue, there is an outside chance the gabapentin is causing the problems in your arm. I got funny tinglings in my arms when on an anti-convulsant.
Also I find that as I get progressively more exhausted the rls gets worse and I think this is a fairly well recognized phenomenon. It is important therefore to get a few good nights sleep. This may help your symptoms to settle down.
I would suggest you get as much info as poss about opioid treatment of rls (there is a really good paper produced by US rls experts recently - I am no good with links but someone posted a link recently - try putting ‘opioids’ into the search bar). Then go back to the GP - with this info - and ask for a temporary opioid to allow you to get some proper sleep.
When I withdrew from pramipexole (a dopamine agonist like your requip) after severe augmentation my awful exaggerated symptoms lasted for months - like you no proper sleep. I date my recovery from when I persuaded my GP to give me OxyContin (though I would counsel against using this for too long unless you plan to rely on it long term as withdrawing from it is also unpleasant). Once I started sleeping better things gradually improved.
Another thing that helped was getting my iron levels up. Get a serum ferritin test at the GP and get the actual figure not just that you are ‘normal’. Rls experts recommend getting levels over 100.
Please don’t assume that even the sleep clinic will know a lot about the most up to date recommendations for rls. Hopefully they will but it is entirely possible that they won’t. It is really important to educate yourself and have proper medical references to convince them. Ideally bring someone with you for support.
Everyone on here understands what you are going through. Many find that friends have difficulty understanding the condition and can inadvertently say the wrong thing so you may be better to vent on here. We are all here for you.
Thank you so much for all of this. Your advice gives me some room for hoping things are still in the withdrawal stage. And I know that my ferritin is low. I had it measured a couple of weeks ago. 18. Not even in the normal range. I have a long way to go to get it over 100 but I'm taking iron so hopefully that will make a difference.
I followed the link that you suggested to find out more about opioids and it was a very informative about different types. I will make notes to take with me.
And thank you for "listening". It helps just being able to be honest about how things feel.
I think mine was about 18 when I came off pramipexole and I now consider it is one of the reasons it took me so long to recover from the withdrawal process. HOPEFULLY, the same is true of you and once you start to raise iron levels things will improve a lot.
I agree eith involuntarydancer about the abusive remark of the doctor and tbe advice about opiods.I rotate codeine and tramadol monthly with a good amount of success.I also get it in my arms. Don't loose hope that things won't get better.We have all felt desperate at times.x
Hi Jumpey I am interested in your rotation of codeine and tramadol. I was taking codeine 30 mg. nightly for some years but it stopped giving enough relief. Can I ask how much of each compound you take? My docs do not seem to have much knowledge of RLS or treatments. Take care
Hi. I take 45mg of codeine and 50 mg of tramadol. I started rotating for the reason you stated-tolerance made codeine ineffective. This way it works better.Good luck.x
Thanks for your response. When you say rotate do you mean codeine for a certain time followed by Tramadol and if so how long do you take each for before changing. Hope this makes sense. I am getting desperate for some relief and GP not very with it.
Oh my! I understand how you feel Suberino! I have the full body effects and it’s so frustrating when your arms start flailing too. To hell with that doctor...that’s all I’m going to say! You’re not alone in your thinking. I’m wishing you peace!
I have read research from the Mayo Clinic and John Hopkins that states that the use of opiates with a reduced dose of a dopamine agonist is often the best course of action. Unfortunately here in the US opiates are discouraged and often very expensive on most insurance plans. It really is frustrating. After sometime, maybe now, you should be able to again take Requip with good results.
Your doctor must be Doctor Dick. Yes, it's life threatening. People want to kill themselves because they can't get relief. Tell him to do some damn homework on this condition. Opioids. They work. Now go find a Doc who's not too much of a dick to Rx them for you.
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Desperate need for help with RLS
Getting Desperate!
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