I am new here 👋 I am 22 and from Guernsey Channel Islands. I've had RLS since 2015. Its severe. I have it everynight and very rare but have had it during the day. I've tried magnesium, meditation, exercise and ropinorole tablets up to 4mg nightly. They were horrible. Had an appointment today with GP (£60) didn't give me anything as wasn't happy to prescribe any muscle relaxants, sleeping pills or pain killers. I am on no meditation at all. She referred me and I am awaiting for a appointment with a neurological but its going to be £250 for each consultation (No NHS on Islands and we have to pay private) to discuss options she mentioned Roigotine (Neuporo patches) anyone tried them? Or any NON-medical advice would be much appreciated. Can't be wasting money if they are useless or if I could know of something that works to ask for while I'm there.
Thank you 😊
Written by
Jade1998
To view profiles and participate in discussions please or .
Hi Jade,A few questions. When were you diagnosed with RLS and when did you first experience symptoms?
Are you on any anti depressants or anti anxiety meds or anti histamines?
Have you had blood tests and if so what were your serum ferritin and serum iron levels?
All anti depressants ( except trazodone and wellbutrin) cause or worsen RLS.
All sedating anti histamines worsen RLS.
Raising serum ferritin above 250/300 resolves RLS in 60% of patients so the first thing you should do is raise ferritin levels. You can do this by taking ferrous bisglycinate ( gentle iron) every other night as this fools Hepcedin which your body produces to block iron absorption to the brain.
You say you tried Ropinirole up to 4mg. Did it work? Why did you stop taking it?
As money is an issue, try Raising serum ferritin.
You could also try diet. It helps a minority but you may be one of them.
Low carb or low fodmaps seem to be the diets that help the most.
Rotigotine is dopamine agonist in patch form. It's expensive but if Ropinirole didn't help or caused augmentation then it doesn't make sense to suggest rotigotine.
Sorry to hear of your plight. I didn't realise there was no NHS on Guernsey. Today I also discoverd you get your electricity from France!
Sad to hear that the ropinirole seemed not to have worked for you. It would be useful if you gave more detail about that.
When you say it was horrible, do you mean you suffered terrible side effects?
What may be very significant is whether the ropinirole ever actually worked for you. By this I mean did it ever relieve your RLS symptoms?
It's important to know this as the answer could inform what your next step might be.
4mg is the maximum dose, so I guess you started on a lower dose but gradually it got increased, which also suggests it wasn't working.
Also of great significance is that you apparently stopped taking the ropinirole at some time. What is important is how you did this and when.
I hope you didn't suddenly stop taking 4 mg and that you slowly reduced the dose over at least 3 months. Stopping it slowly can be dangerous. Weaning off it too fast can cause severe withdrawal symptoms.
So if stopped suddenly or withdrew too fast you may now be experiencing severe symptoms due to withdrawal.
There are steps you could have taken before starting on any medication and they still remain options now.
The first of these is iron therapy. This is actually a treatment for RLS rather than just giving symptom relief. Iron deficiency is a major causative factor in RLS.
It requires blood tests for serum iron, transferrin and ferritin. If your serum iron and/or transferrin saturation are low, then you may have iron deficiency anaemia (IDA). This in itself can make RLS worse.
If these two are OK then your ferritin level is important. If it is less than 75 then you may still have iron deficiency, it just isn't IDA. Brain iron deficiency (BID) is what causes RLS.
This is definitely not a quick fix but if your ferritin is less than 75 then you may benefit from raising it to 100 by taking an oral iron supplement.
50% of RLS sufferers can benefit from this. If your ferritin is over 75 but under 200 then iron therapy gets more complicated.
The second thing you could have done, can still do is to see if there's anything making your RLS worse.
This could be anything from quite a long list of other medications. The main ones are antidepressants and sedating antihistamines, but there are many others as well.identify
If you can identify any such exacerbating factors and stop them or change, th en this could improve your R LS.
There could be other exacerbating factors in your case. These differ from individual to individual. Inflammation is a factor and diet is adociated with this. There is information about this on this site.
Some things "trigger" symptoms very quickly. this includes alcohol, sugar and caffeine.
Supplements in magnrsium, vitamin B12 and vitamin D can help if you have a deficiency in any of these. An anti-oxidant supplement cannhelp. e.g. celery juice (tablets).
As an overview of the treatment of RLS, you may find this link helpful
I don't know if in Guernsey your IP address comes up as a UK address. If it does not then unfortunately this next link won't work for you. It is a link to the UK national guidance for GPs on the management of RLS.
For severe RLS kusclevrelaxants and sleeping meds are of little value, they don't relieve symptoms.
"Painkillers" meaning anything that relieves pain aren't generalky that helpful. However opioids are effective for RLS. They are jot usualky accepted as a first line med for RLS however. Success in getting a prescription is very variable. It's easier to get one for a weak.opioid, but ideally a low dose of a more potent one is better.
Ropinirole is one of three drugs called dopamine agonists recognised as being effective for RLS and known as "dopamine agonists". (DAs). The others are pramipexole and rotigotine ( the neupro patch).
Internationally it is now recomnended that DAs be avoided if possible. The preferred drugs are either pregabalin or gabapentin. These are more or less equally effective as a DA when fully working.
The problem with DAs is that they carry a high risk of a major complication. The others carry a much less risk.
Also as regards ropinirole or any DA. They are renowned for being almost immediately effective.
Hence in cases where it is suspected that somebody might have RLS, sometimes a test dose of a DA can be given.
If the test dose works, then it almost certainly confirms the diagnosis. If it doesn't work then you might suspect that diagnosis of RLS is incorrect.
As regards your GP and a neurologist. My opinion is that you might want to hold off on seeing a neurologist. Neurologists aren't necessarily well informed about RLS. You could possibly be wasting money.
GPs can help manage RLS. It does require that they get the right information to enable them to help and also that they're willing to negotiate a care plan with you.
It's only a siggestion but it might he a goid idea to collect some authoritative information about RLS and see yoyr GP with it.
The links I've given are a starter.
In summary
Iron therspy can treat RLS
Look for exacerbating fsctors, particularly other medications, but also diet.
I suggest trying pregabalin or gabapentin to replace the ropinirole not neupro.
If those don't work then seek a prescription for an opioid, oxycodone, methadone or buprenorphine.
The information I've given is based on authoritative sources of medical information. My suggestions on what to do are just that. I do not seek to replace your doctor. I am not a doctor.
Hello Jade, I had RLS for many years and was prescribed many things, none of them worked. I have a neurological condition and was eventually prescribed Clonazapan by a Professor in The Neurological Dept. in Sheffield. That was at least 6 years ago. I take one tablet every evening without fail and haven't had RLS even once since. I have suggested it to a couple of people on this site. Not sure if they explored Clonazapan or not. If you're seeing your Neurologist in the near future ask him about this wonderful drug. I know it's a difficult situation on Guernsey regards medication and doctors fees as my friend lives on the island and I have visited her many times. I wish you good luck and many restful night's in the future. If you Google Clanazapan it will give you all the answers. Love from Angela x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can anyone suggest what I can do?
Soap can be helpful for RLS
Clonazepam helping anyone with RLS?
Anyone tried this to help?
Hello, can you help me please
