hello, I’ve been struggling with this condition for several years. I take pregablin and cocodamol but my GPS always want me to come off it whenever I go to the about the rls.
I want to try an opioid patch but know that my gps would never prescribe it.
mum now at my wits end, I’m a nurse myself and am well aware of the risks of augmentation with dopamine drugs.
mum actually considering suicide as a way out now , becuase it won’t let me sleep.
As you all know this condition is just torture.
I take magnesium and iron and all sorts of supplements.
Can anyone recommend a good consultant I can approach to help that is based in the UK?
Much love to all suffering with this
Who answers at the HELP line at the RLS-UK?
Help RLS during daytime
Temgesic 200mcg prescribed in UK by NHS consultant
I totally understand your dark thoughts but please don't do anything.
How dreadful that your GP is trying to stop you taking meds. Clearly doesn't understand how serious RLS is and that it has the highest suicide rate of all neurological diseases.
You should see Prof. Walker at UCL, Queen Square, London.
He may refer you for an iron infusion if your serum ferritin is below 100 and he will prescribe low dose opioids.
Does the pregabalin help? Do you take magnesium at least 2 or 3 hours before pregabalin? Otherwise magnesium stops absorption of pregabalin.
Where you on dopaminergic meds before pregabalin as often it doesn't work for those who suffered severe augmentation.
Prof. Walker will prescribe Buprenorphine which is highly effective at low dose for refractory RLS.
Hi Joolsg
Thank you so much for your reply. I don’t feel so alone now.
The pregablin does take the edge off somewhat , but I’ll wake at 2am and my legs are going like made and that’s it. I don’t get more than a couple hours of sleep even though I’m exhausted. 😞
I take the magnesium about three hours after the pregablin. Then just before sleep I’ll take the cocodamol.
I will request an appointment from that Doctor, thank you so much.
My GP I think just sees me as a drug seeker , as I also have fibromyalgia, but out if all of the symptoms it is the rls that gets me the worst. I just want something to make it better - I’d take anything for that .
Thanks once again lovely 😊
I was on 25mg Oxycontin and 150mg pregabalin and still had severe RLS. That's why I pushed for Buprenorphine.
If increasing pregabalin to 300mg at night doesn't help, you will probably respond well to Buprenorphine.
Good luck.
Try taking the magnesium 3 hours before the pregabalin.
I know one needs to take magnesium 3 hours before gabapentin but in researching it I haven't found anything that says this is true for pregabalin although it would seem logical. I would be interested if you have found a source for this.
I could only find a reference to Antacids ( most of which contain magnesium) in a pain leaflet about Pregabalin and Gabapentin. Basically it says antacids ( & magnesium) interfere with absorption.
But you're correct. It doesn't specifically state pregabalin absorption is affected but as they're so similar, I suspect magnesium will also reduce absorption.
yes I have always suspected this - as when I have taken antacids within a few hours before- it’s like the pregablin doesn’t even work. Yes I do take 300 mg of pregablin , iron and also the cocodamol at night and still they go mad. I’ve tried eating , not eating , drinking herbal teas, milky drinks , alchohol, no alcohol. But nothing. It used to work quite well . I do believe I’ve had rls all my life, I can remember when I was little having hot feet and having to constantly move them . I’m 42 now and it’s progressively getting worse. Went mad when I was pregnant too . I think this has to be the most distressing condition . Thanks so much for your advice. I have emailed to request a consultation with the Doctor you mentioned, so I will keep everything crossed 🤞