consultants in the Uk to help rls

[Lola43]

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

[Joolsg]

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.

[Lola43 in reply to Joolsg]

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 😊

[Joolsg in reply to Lola43]

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.

[SueJohnson in reply to Lola43]

Try taking the magnesium 3 hours before the pregabalin.

[SueJohnson in reply to Joolsg]

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.

[Joolsg in reply to SueJohnson]

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.

Text1

[Joolsg in reply to Joolsg]

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.

[Lola43 in reply to Joolsg]

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 🤞

[kelirock]

I was prescribe an inappropriately high dose of Pramipexole by a Neurologist after he diagnosed me with RLS which I have suffered from for about 25 years. After augmenting twice on this disgusting drug, I gradually ceased it and had to pressurise my GP to prescribe Pregablin but he would only prescribe to 175mg per day as he knows nothing about RLS and cares less about it. This dose was not effective and as he would not increase it, I am slowly reducing it with the intention of ceasing it all together. I now smoke a very small amount of cannabis daily and this works extremely well. Thank goodness more research is going on into this drug, hopefully it will become legal soon in my country. Hope this helps you, sometimes it takes trial and error with various medications until you find something that suits you. I understand that sometimes this RLS can drive a person to consider a final end to the torture you are describing, but please, just keep trying. Wishing you well.

[Lola43 in reply to kelirock]

thank you . I will keep trying, but as you know when all you want to do is sleep it’s ridiculous, I can remember when the RLS first really ramped up and I went 3 weeks with rls non stop day and night. The only thing that worked was cocodamol, but for some reason it’s stopped working. I spoke to a gp last week who wanted to start ropinerole , he wouldn’t even consider an opioid and wants me off the cocodamol due to all CCGs cutting them off due to addiction issues. I told him I wouldn’t even consider the ropinerole due to issues with augmentation . They would rather cause more harm by prescribing these doperminergic drugs - no way will I even try this as I’ll end up with more problems. 😞 I wish they were more educated in this .

Thank you all for your replies - it’s really helped . Love to you all

[Lola43 in reply to kelirock]

I’d also like to add that I will be going for cannabis soon if I can’t get the help I need . As we all know we would do anything to make it stop and I’ll try the illegal way before I do myself in. Hopefully I can see the consultant and they can help with the patch - but I’m thinking my GPs will refuse to prescribe it anyway as they are dead against opioids. Can’t wait until the health service can get up to speed with this condition

[Nikon-]

hi sorry just seen your post

Firstly please keep talking to people on here and know you are not alone and there are answers

My situation with rls is not as acute as many on here but I do understand

However I have referred on this forum a couple of times to a device called therapulse which I recently bought (approx£35.00) and it has helped considerably. I take 3 Pramipexole a day having reduced from five and seem to be controlling the rls by using the therapulse for 10 mins on each leg before going to bed and so far all is good

I know these things don’t work for everyone but for me it was worth the small investment

Re the Pramipexole I understand it’s not the right medication and am working on my gp to try the gabapentin. Slow steps as we all know on here. They don’t have it so don’t understand. Just remember keep talking to fellow sufferers never ever give up hope

Big rls sufferers hugs😊

[Lola43]

thank you so much Nikon . I will have a look at the therapulse. Anything to help !

Xx

[Truthsword]

Im so very sorry to hear of your suffering. The word torture does describe it! I have lately been avoiding foods high in glutamine. It isnt a cure but it is a factor. And even more, refined sugar does really make things worse. I am on Requip ,5 mg and gabapentin 300 mg. Stress is also a factor. I started this madness when i was 16....i am 72 now. I gave been consulting with a Dr. at the Mayo clinic in Rochester. Next week i have an apt. with the Jacksonville Mayo Clinjc so i can get prescriptions from them. Just keep praying.

[Netball-50]

You sound like me I'm having a really bad time with my legs again. My GPS referred me to Sheffield NHS trust which is the best thing they ever did. I am under Dr Dennis he is so understanding and knowledgeable about this horrible condition. I cried on the phone as he understood the symptoms and said I have severe RLS ! I have a medication plan in place which I'm trying to follow only thing that takes it off is codeine!! I am also on 375mg pregabalin and increasing this upto 600mg max he said if doesn't work other treatments are plan b and c so I'm still on with this . It took me forever to get to this stage GPs not knowledgeable about RLS I'm afraid they admitted this to me saying 'I don't know anything about it !!!' it's a long hard struggle to get help !! Good luck hope yours settles soon this forum is a god send ❤️

[pennygates]

Lola, please don't despair. I have said the same myself to my GP. It is truly awful. One other specialist in Bath who has prescribed opioids is Dr Robin Fackrell, Neurologist who specialises in RLS. He is to be found at the Open Circle Hospital in Bath. There are specialist sleep clinics who are more progressive. A couple of members have given positive feedback about Dr Fackrell, although it is all anecdotal. I'm going to look in more detail about Dr Fackrell, although it's an 8hour journey by train.

It is a desperate situation you are in, please don't lose hope, and reach out here to allow people to try to help you.

[Kaarina Administrator in reply to pennygates]

This neurologist was recommended by HU user Dotmowatee in 2022. May be a good idea to use the Chat icon to ask Dotmowatee more about him?

[pennygates in reply to Kaarina]

Hi Kaarina,Thank you for sourcing that information. I will contact Dotmowatee to ask more.

I do have a few problems negotiating the site. One, it's knowing what to do

[pennygates in reply to Kaarina]

The other is actual physically using the keyboard. My eyesight has deteriorated more recently because of glaucoma . Keying in replies is a nightmare, and I am painfully slow, Needing to constantly correct my typing. At times I can see double reading the screen, which adds to the problem. I realise it may be too difficult to do reply posts at all fairly soon, although I could ask a question, and read posts still. I press a button accidentally and lose posts frequently, and other consequences.l

[Kaarina Administrator in reply to pennygates]

I am sorry to hear this. I think you are doing very well. It is most frustrating when an incorrect button is pressed and you lose what you have just typed. I much prefer to use a computer than a mobile phone.

[Lola43]

ahhh yes I have heard of Dr fackrell in bath. I think I will also book to see him . It’s closer for me than london and that’s for sure! Thank you so much. Us leg twitchers need each other and stick together to give the best advice and hopefully all get treatment that works . Fingers crossed for us all as it’s absolute torture xxx

[Kaarina Administrator in reply to Lola43]

You may like to take a look at this thread before you decide about seeing Dr Fackrell..... healthunlocked.com/rlsuk/po...

Forum user Huntingleroy mentions that Dr Fackrell dismissed Augmentation when he spoke with him!