I'm up again. Cant sleep. Cant settle

[Forgetmenotblue]

I have RLS. Some times it affects my arms and creates a general sense of physical restlessness. I just cant settle in bed and try to sleep.I take pramipexole each evening but it doesnt always stop the physical discomfort and restlessness. I am prescribed Tramadol for pain relief. Some nights I just cant sleep without taking it. It seems to ease that awful physical restlessness. But I am wondering if I am developing an addiction to it. I often have to get up and take some before ivan settle back into bed and get to sleep.

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[Hidden]

I have a short answer for you.

I will add more later

I'm afraid there is a lot of things you need to know in order to deal with your current problem. A lot.

Luckily it does appear fairly obvious what your problem is

You are apparently suffering dopaminergic augmentation caused by pramipexole and may have to think about stopping it. NOT immediately and NOT suddenly.

If you don't do this things may get worse.

Please see this link

cks.nice.org.uk/topics/rest...

[MumofSam]

I was also prescribed Tramadol for sciatica, and noticed my RLS symptoms, which for decades had been relatively mild, completely disappeared. However, without Tramadol they sky rocketed and it was total hell. So I ended up staying on Tramadol for over 3 years, long after having spinal surgery to help the sciatica, because my RLS was unbearable without it.

About two and a half years ago I decided I was fed up of taking it, and constantly panicking if I was running out. So, with her help of my GP I slowly weaned off it. As I was weaning off life was hell, and I noticed for the first time I now had RLS in the base of my spine and my left arm. I hoped it was just the effects of weaning off Tramadol, but no. I weaned off Tramadol completely, but my legs were absolute hell, I couldn’t sleep, my lower back was hell, as was my left arm and by then RLS had also started up in my neck!

I persevered for over 8 months of sheer hell, waiting for things to subside, but they never did. In the end I could take it no more and went back to my GP and have been on 2 x 50mg of Pregabalin ever since. I still struggle, badly at times, but the insomnia has gone and some nights I even get away with no, or little, RLS.

Tramadol has wrecked my life and altered my brain permanently. There was a post on here from a GP a whole back who found the same thing after taking Tramadol and believes it had permanently damaged the dopamine receptors in her brain, and that confirmed what I had been thinking.

I don’t know how long you’ve been taking Tramadol. I hope it’s not as long as I did. Go back to your GP and get help to wean off it and find something else to help with the pain. If I’d known then what I know now I’d have preferred the agony I was in from sciatica caused by spinal stenosis than the permanent hell I’m left in now. And I can still feel RLS trying to do spread to the top of my head/scalp area, would you believe!

Good luck.

[Nettles68 in reply to MumofSam]

I can sympathise with your experience, I have this now! Severe RLS in the base of my spine! It is so distressing I don't know what to do with myself!

I am augmenting severely on ropinirole and in the process of slowly withdrawing. I can only hope that once I am off the ropinirole things improve!

So sorry for your situation 😭

[sweetiepye in reply to Nettles68]

Yes, things should improve drastically, but not completely. I augmented on Ropinirole and withdrew from it about 18 mo. ago. I took Suboxone for help and I'm still on it plus Lyrica . It is a worry because I can't be without it and if anything changes such as my doctor I could be in trouble. My long term goal is to get off opioids altogether . Back to withdrawal... I think I've had some permeant damage in my brain. I have terrible nightmares and memory blanks . The awfulness of augmentation stopped almost immediately when I started the opioids . I still have some break through RLS which a hot bath can eliminate . Things are so much better

[Nettles68 in reply to sweetiepye]

Thankyou sweetiepye for your reassuring message.

At the moment I am on 25mg of oxycodone a day and still my symptoms are severe as I reduce the ropinirole! Like you eventually I would like to try to manage without opioids but I'm not very confident of success.

This is a nightmare none of us asked for and I suppose all we can hope for now is to achieve some decent quality of life after the trauma of augmentation.

I'm glad to hear things improved for you once through augmentation. I hope it stays that way for you on into the future. 😊

[sweetiepye in reply to Nettles68]

Me too and for you as well.

[involuntarydancer in reply to Nettles68]

You are in good company, Nettles. There are many on here who have been through the same and will have great sympathy for what you are experiencing. I wish you well. As Sweetiepye has said, it is likely that eventually you will find that your rls symptoms settle down. Whatever happens you will be glad you got the dopamine agonists out of your system. I felt 'myself' for the first time in years when I finally weaned off them.

[Nettles68 in reply to involuntarydancer]

Thankyou for your encouraging message, it gives me heart.

I'd been feeling quite low but experiences such as yours make me feel like it will all be worth it in the end!

Very much appreciated 🤗

[Joolsg]

I think Manerva is right. Your problem is the Pramipexole causing augmentation. See the pinned post.What dose of Pramipexole are you taking and for how long?