Restless legs syndrome

[Beekeeper24]

Anybody have any advice, guidance at all on restless legs and how to cope with this condition

[LotteM]

That is a very general question. All posts and replies deals with this. Hence I suggest you do some good reading through the various posts. Also, rls-uk.org (UK) and rls.org (USA) are great sources.

If you have a more specific question, we will share our experiences and knowledge.

[ChrisColumbus]

Welcome to the forum.

Unfortunately very few UK doctors or neurologists know anything much about RLS: they aren't taught it, and they rely on outdated info from NICE/NHS.

Forget quinine: if a doctor is still recommending that - run away!

Having augmented on pramipexole the last thing to have been moved to is ropinirole (just another Dopamine Agonist - DA - which are no longer first line treatments for RLS used by experts). And neither pregabalin nor gabapentin will be effective until you've been fully off DAs for several weeks, having weaned off very slowly.

Exactly as Lotte says: start by reading up on RLS-UK, including Augmentation, Medications to Avoid, Non-Medical and Medical Treatments etc etc and then come back with questions:

rls-uk.org/

[Joolsg]

Your bio mentions Ropinirole and meds for depression.If you list ALL current meds and doses and your full iron panel blood test results, we can guide you.

Most people come on here because they're on Ropinirole or Pramipexole and trigger meds, like anti depressants.

As a result, they have severe, uncontrolled RLS.

And look at RLS-UK website.

UK doctors aren't taught anything about RLS or the dangers of dopamine agonists, so we have to do our own research.

[Beekeeper24 in reply to Joolsg]

Hi, I currently take ropinarol 2mg each evening, ferrous sulphate200mg each morning, citalopram 40mg each morning, codeine phosphate 30mg when required. I can't remember off hand what my ferritin levels were and iron but the results did show as low, below what they should be.Id need to find the letter. I'm supposed to see the neurologist consultant again in about 2months time.

I just feel so lost, the Dr's don't seem to know what to do or care to much and the consultant said it's pretty much trial and error. So iv been reading self help books etc and specifically books about this condition. Being in a car can be hell, having to get out on the journey to walk about, flying is horrendous and so is things like cinemas and theatres. It can be absolutely torture.

[Joolsg]

Who is the consultant?The top US expert, Dr Buchfuhrer, says that 95 -98% of patients can be symptom free with the RIGHT doctor using the RIGHT tools.

You have the WRONG doctor using the WRONG tools.

So first, change neurologist.

Your neurologist should have told you that Citalopram triggers/worsens RLS. He should have worked with you to safely replace it with trazodone or wellbutrin.

Professor Guy Leschziner at Guys hospital has written the section in NICE guidance on replacing trigger meds. He refers his RLS patients to a psychiatrist who is able to prescribe wellbutrin.

Then, the neurologist should realise you suffered augmentation on Pramipexole so you will quickly suffer it again on Ropinirole. And, of course you have.

Look at RLS-UK website. Go to 'useful resources". There is an iron therapy page and a withdrawal schedule for Ropinirole.

Ask your GP for full iron panel blood tests and raise your serum ferritin above 200ųg/L via pills or iron infusion.

Then your GP /new neurologist should review and safely replace citalopram.

And straight away-you should start slowly reducing Ropinirole in accordance with the RLSUK website.

You should ask the GP/new neurologist to prescribe a low dose opioid, like codeine, to help you through the severe RLS at each dose reduction of Ropinirole.

When you reach 0.5mg Ropinirole, then you start gabapentin or pregabalin, at night only, as set out on RLS-UK website.

And you're right about UK doctors.

There are only a handful who know about it.

[Beekeeper24 in reply to Joolsg]

Thank you so so much, I had no idea people can find ease, I just thought that's it for life with this aweful thing. Dr Salim I'm under at Stafford county hospital.

[Joolsg in reply to Beekeeper24]

He will be added to our 'bad doctors list'.

[Joolsg in reply to Beekeeper24]

Many people can find complete relief.Many do well after iron infusions. Many find gabapentin or pregabalin resolves their symptoms.

However, for many, after years on dopamine agonists, iron infusions and gabapentinoids do not work. Experts in the USA believe it's because dopamine agonists cause permanent damage.

The RLS is then 'refractory' and low dose opioids are needed.

I take 0.4mg Buprenorphine and have zero RLS.

ObviouslyI know what you're going through because I was on Ropinirole for nearly 10 years.

Nearly everyone comes on this forum when they're suffering augmentation on Ropinirole/Pramipexole and their neurologists and doctors don't know what to do.