Rls

[Grandmother8]

I have been taking cideine 15 each night for rls but it doesn’t seem strong enough now after a few years. Is anyone else using this for rls and if so how much. Thanks

[Jelbea]

I have been taking Codeine 30 mg. per night for many years but for the last year it is not helping RLS which is of course much worse now than when I started Codeine. I have to have blood tests next week and then an appointment with my GP when I hope to discuss the Codeine with him. I have not been able to take any other medications as I am very sensitive to all sorts of tablets and always get the side effects plus some more!!! I am also hoping to have my ferritin level checked to see if anything can be done is my iron is low.

Codeine 15 mg. is a very small dose and perhaps you should see if your doc would allow you to try a higher dose. I will post my results after I see my doc.

[Grandmother8 in reply to Jelbea]

Thank you for your reply jelbea. I will definitely speak to my gp to give me the ok to increase dose (I hope!)

[darena in reply to Jelbea]

I took 90 mg codeine while it still worked. Anything less didn't work. After 8 miserable years and a litany of useless pills I bought a Relaxis pad and it was a miracle. I am pain free and don't take any pills

at all now. It's worth a try. You can rent one from Relaxis and they will guide you on how to work it for the best result. Good luck!!

[Parminter]

If you have not yet had your ferritin levels checked, then do so.

The level should ideally be above 100.

It is possible that, if your ferritin levels are very low, then fixing it will preclude the addition of more codeine.

[Jelbea in reply to Parminter]

I have never had my ferritin checked but I am attending for blood tests next week and I shall ask to have ferritin done as well. I suffer from macular degeneration and I have been reading up on this from the point of view of perhaps having to take more iron. Apparently too much iron can further harm the macula and I was wondering if you or anyone else on this forum knows anything about this. I would really like to stop the codeine as I feel it is not helping at all now and I don't really want to take a higher dosage, but RLS really bad at present with arms and legs both moving and jerking for 2 - 3 hours each night and also during the evening legs are on the go.

[Parminter in reply to Jelbea]

That is problematic, but perhaps there is a happy medium?

Your specialist will know.

But there are stronger opioids that could be prescribed, as well as meds specifically for RLS.

Codeine does not go very far, and the condition does slowly worsen with age.

All meds have their side-effects, but one or two difficulties is better than constant RLS.

[Jelbea in reply to Parminter]

Thanks for your reply so quickly. In the past I have had (amongst others) pramipexole, gabapentin and pregabalin - all of which gave me very bad reactions and in the case of gabapentin I started to have migraine with aura which I had never had in my life until I took the gabapentin. Pramipexole lasted three weeks before I augmented and started to have RLS from lunchtime onwards. I ended up on Codeine as the only treatment I could tolerate and for some years helped.

I have had RLS now for over sixty years and it now daily - evening and during night - so a good night's sleep is only a memory. I find it amusing how often we read that it is so necessary to have a good night's sleep or your health suffers and all the "sleep hygiene" points that we are told about when us RLS sufferers know we are still surviving on so little quality sleep for so many years.

Can you suggest the name of the stronger opioids which are used for RLS so that I may go to my next medical appointment prepared. Thank you so much.

[Parminter in reply to Jelbea]

Oh Jelbea, that is just awful.

But sadly, so reminiscent of many of our stories.

My history is not unlike yours. I am very 'side-effecty', and have been harmed by BP meds, statins, SSRIs and also Pramipexole, augmenting very fast. I still take only 0.25mg but have all the side-effects. I have also had this affliction for many decades.

The codeine 'mixtures' that are available OTC where I am are very dirty medications, Codeine alone would be preferable.

And yes, I get hugely distressed by all that sleep hygiene tarradiddle. As if we did not know and had not tried.

The stronger opioids would be, inter alia, oxycodone and hydrocodone, both of which can come in long-acting versions. (Both come under a variety of proprietary names).

I have been given methadone to control symptoms when the pramipexole stops working, as I refuse to take more, knowing what I do. It works wonderfully well, all better in thirty minutes. I will soon attempt to come off pramipexole, and I will do it with the help of methadone (if my doctor stops pursing his lips).

Many Doctors will frown, purse their lips, and look at their notes when you mention strong opioids, but some of the leading experts from the finest universities, men who devote their time to RLS, are now of the opinion that low-dose opioids are the most suitable medications for us, particularly if other meds have been tried and failed.

The best doctor is Professor Christopher Earley from Johns Hopkins. You really cannot argue with a man of that calibre.

youtube.com/watch?v=iCNI_UC...(Not working as expected?)

mayoclinicproceedings.org/a...

The Mayo Clinic Proceedings article is very recent, so no argument there.

Another great doctor is Dr Mark Buchfuhrer of Stanford University, who is very sure that opioids are the best medications for refractory RLS. (I think he is a co-researcher in the Mayo Clinic Proceedings). He devotes his whole career to this thing and is hugely compassionate.

sleepreviewmag.com/2015/02/...

With regard to the iron, if your ferritin is very low, and there are worries about medical iron, perhaps think about Floradix Iron Syrup, it is entirely made from plants, tastes wonderful, and does not wreck the stomach. It would take a long time to get levels up via this slow route, but perhaps it would do no harm. It's just like eating your greens.

Do let us know how it goes. I would print out the Mayo Clinic article, it is available free as a pdf, and take it to your doctor.

[Parminter in reply to Jelbea]

Oops, they put up a link to a slideshow from the RLS Foundation (to which I belong), but cut off the link to the paper.

mayoclinicproceedings.org/a...

[Parminter in reply to Jelbea]

ncbi.nlm.nih.gov/pmc/articl...

You can download the full text of this one too. Neither Dr Earley nor Dr Buchuhrer charge for their academic papers, they are always free for all.

[Jelbea in reply to Parminter]

Parminter thank you so much for all the information you have given me not to mention the time spent in doing this. I really appreciate what you have done. I have read the papers which you suggest and will have the information handy for the doc if necessary. At present I get the codeine on prescription from him so it is only codeine with nothing else. It seems from what I have read that a stronger opioid at the lowest possible dose might work better. Sorry I have not responded sooner but am just back at my computer now. Again many thanks for your care and interest. Until I came upon this site I felt very alone with my RLS and not sure what to do. I will keep in touch. It is so nice to see that everyone on the site is supporting everyone else.

[Parminter in reply to Jelbea]

Jelbea, we help one another because at some time we have all been completely alone and hopeless. Many of us have been suicidal, myself included.

It is a pleasure to help another sufferer.

This is such a misunderstood and under-estimated disease, not least by doctors.

I find I like doing the research, it helps me to help myself, and means I do not have to sit in front of the doctor feeling like a victim.

So I have just taken control.

And I have received an immense amount of help from this site.

[davidadill]

The key to using codeine is to take a break once in a while. It usually works well for me for 6-8 weeks at a 24 mg dose, but then efficacy tails off. So I use gabapentin for a couple of weeks. By that time codeine regains its strength. When I first did this, the first night I started codeine was a disaster, with 3 episodes of RLS during my first 5 hours of sleep. The next 2 nights I slept 8 hours with no RLS. My conclusion is that codeine has some cumulative effect, so I needed to take it the first night in order to help its efficacy on the subsequent nights. Next time I will start codeine while continuing gabapentin for an extra night to avoid the transition pain.