3 full nights sleep, I'm shocked

[Sandramilnes]

I have had RLS for 32 years. Recently, it has been severe with only 2 hours sleep per night and no rest during the day. 3 nights ago, I took 1 Cocodamol 30/500mg and my usual 1mg Ropinerole. I slept 8 hours the first night, and 7 hours the next 2 nights. I woke feeling amazing. I am so happy now.

[Hidden]

So glad you slept!

[Sandramilnes in reply to Hidden]

Thank you x

[Joolsg]

Codeine can help RLS. Interesting that you say you’re on Ropinirole but getting little sleep and no rest in the day.

Sounds like you need to change meds. If codeine has helped, discuss switching to a low dose opioid like tramadol or OxyContin or another type of med like pregabalin. However, if you do switch, reduce the Ropinirole very, very slowly.

[Sandramilnes in reply to Joolsg]

Hello. Thank you for your reply. I have been on gabapentin and pregabalin both affected my sleep terribly. I'm going to give it another week on the Cocodomol to see if the full nights sleep continues. before I contact my GP. I must say I feel better now than I have in years. The sensation and rigidity in my arms has stopped too and I'm sure I can see and think more clearly.

[Joolsg in reply to Sandramilnes]

Pregabalin and Gabapentin don’t help if used while you’re on dopamine agonists like Ropinirole. They can make you very drowsy.

Co codamol contains paracetamol so it would be better to take plain codeine. Ask your doctor about it.

It would still be better to get off Ropinirole if it has stopped working.

[Hidden]

Just to second what Jools says reslly. You seem.to have discovered the benefits of an opiate for RLS.

I presume you have a prescription for cocodamol fir something else rather than RLS. It's not the best opiate for RLS, it's not really potent enough.

It being combined with paracetamol.is also a disadvantage.

Getting a prescription for another.opiate specifically fir RLS may be a problem, but if the gabapentin/pregabalin didn't work and the ropinirole's failing does strengthen yoyr case.

I do wonder why the gabapentinoids disturbed your sleep when they are known to help sleep, in fact can make you drowsy.

In addition, I hope you are also aware.of the effect of deficiencies, (especially iron)) and aggravating factors on RLS.

[Sandramilnes in reply to Hidden]

Hello and thank you for your comment. To be perfectly honest I and wrongly I know. I was given the cocodamol by a family member to help my tendinitis. I dont have a good relationship with my GP practice. The reason I took the cocodamol was to take my back pain away following a fall in the bath. I'm now on my 5th night of good quality sleep, no RLS symtoms. I only take the one cocodamol. Can you explain why the paracetamol is not good idea, I'm intrigued. I have had numerous full blood tests but they haven't included iron test. I turned up for a prebooked iron test a while ago and the GP had not released the paperwork saying I had already had one, but when I asked for the score they couldnt find one. I will now press for an iron test.

[Hidden in reply to Sandramilnes]

The point about prescription cocodamol is not to say it's wrong, but to say that getting a prescription for any kind of opiate for RLS isn't easy.

A more potent opiate like tramadol or oxycodone would be better but getting a prescription from a GP you don't have a good relationship with might be problematic, you may have to consult a specialist. Your case does meet the UK criteria for referral to a neurologist.

The significance of the paracetamol in cocodamol is both good and bad. It's good because it limits how much you can take i.e. no more than the stated dose. If you're aware of the possible consequences of taking even a little too much paracetamol, hopefully this will prevent you taking too much if you find the 30mg or even 60mg codeine isn't enough. This lowers the risk of addiction to the codeine.

It's bad because if you're not aware or if you are tempted to exceed the stated dose anyway (as it isn't enough) then you may suffer the consequences of taking too much paracetamol i.e. possibly fatal liver failure.

You may or may not be aware that you can register for online access to your GP record. I've been doing this for some years now. I can get most blood test results within a couple of days and I can get the actual results not just being told that's somethings "normal" - often when it isn't! You can also order repeat prescriptions, see a record of consultations and see any letters etc.

The usual iron tests for RLS are serum iron, transferrin, ferritin and haemoglobin. If haemoglobin is low then this indicates iron deficiency anaeamia which in itself is a cause of RLS. However if haemoglobin is OK and more significantly if ferritin is low then you may benefit from iron supplementation.

You may read various versions of what the ferritin level should be for someone with RLS.

As guidance if the ferritin level is below 75ug/L then you may benefit from taking an oral iron supplement with the aim of increasing ferritin to at least 100ug/L and 50% of people with RLS benefit from this.

Ideally, it should be 200ug/L or more, but unfortunately this is virtually impossible to achieve by taking oral iron. It would require an IV iron infusion.

The least upsetting (to your digestive system) iron supplement you can take is "gentle" iron ferrous bisglycinate. Your body naturally defends itself from absorbing too much iron by secreting a hormone called hepcidin so the best way to absorb iron is to take it every other day, NOT every day. You can take twice the daily dose.Drinking a glass of orange or taking a vitamin C tablet at the same time and taking it on an empty stomach can also help absorption.

[Sandramilnes in reply to Hidden]

Thank you, you advice is beneficial to me. I do use the online service to see my records and I log the blood tests on a database, as you rightly say the GP's do say 'normal' or 'to be expected' which I discuss with them. Regarding the iron tests, I am onto that now and wont stop pestering them until I get results. I am currently on a waiting list for the neurologist but because of the pandemic the waiting list is 37 weeks wait. Early next week I will hear from another neurologist in another area to see if I can get an earlier appointment. I am aware of the paracetamol overdose but not aware of the codeine addiction. I suppose the latter will depend on how long I am RLS free and sleep duration.

Haemoglobin concentration (Xa96v) 137 g/L

Mean cell haemoglobin level (XE2pb) 27.9 pg [27.5 - 32.5]

[Hidden in reply to Sandramilnes]

Waiting time for neurologists are long anyway 26 weeks or more even pre-Covid.

Also be aware that neurolgists doesn't mean RLS specialist. Sorry to say some neurologists can be quite ignorant about RLS. They are more likely to prescribe an opiate however, and instruct your GP to repeat the prescription.

Targinact, which is oxycodone and naloxone is licensed for RLS in the UK. The less potent tramadol is more popular it seems, but in that case, the slow release version is better.

Codeine, like all opiates is dependency producing and potentially addictive. Dependency can cause "tolerance" after a while. This where you need a higher dose to get the same effect. It may also produce withdrawal effects if there is any delay in taking a dose. It's taking higher and higher doses as a result of this that leads to addiction. The longer you take an opiate the more dependent you can become,. This why it's really important to stick to the stated dose.

Dependency, in itself is not necessarily a bad thing, but it can lead to problems if not careful, such as addiction. Ropinirole is dependency producing, possibly more so than some opiates and withdrawal effects can be severe. It's not usually considered as an addiction risk because it has no psycho-active effect, no "high".

It's worth considering weaning off the ropinirole.

The most significant test for iron deficiency for somebody with RLS is ferritin, not haemoglobin. Your haemoglobin indicates how much iron there is in your red blood cells. RLS is influenced by how much iron there is in your brain.

Ideally your ferritin should be 200ug/L, preferrably above 100ug/L and if it's below 75ug/L oral iron is recommended. As your haemoglobin is normal, this is not relevant to your RLS.

sciencedirect.com/science/a...

[Micafe]

I'm very happy for you!!😊