Desperate

[Grandmother8]

How much codeine is needed for rls. I have been on 15 per night but doesn’t help much anymore.

[connie50]

YOU ARE TAKING FAR TO MUCH CODINE,YOU ARE AUGUMENTING.

[nightdancer in reply to connie50]

NO that is the lowest dose, for on thing, and also you ONLY AUGMENT ON DOPAMINE meds, once in a great while Tramadol because it is synthetic, but that is RARE. That is a VERY low dose of codeine, so she is not augmenting. I can say that with great surety.

[Eryl]

Codeine is a pain killer, it won't stop your rls, just dull the sensation. Taking codeine regularly is not recommended. I took co-codamol, which is 30mg codeine plus 500mg paracetamol, for a few days after a cycling accident, but had to stop because it caused stabbing stomach pains. It says on the packet that taking it long term can lead to addiction.

[nightdancer in reply to Eryl]

That is all we can do now is "dull the sensations". There is no cure yet, they are working hard, but right NOW, in this moment in time, all we can do is try and control the symptoms. Lots of people take pain meds for RLS, because nothing else will work for them. I have tried everything, and I do mean everything in the last 28 years since I was diagnosed and manage several groups for RLS on and off line. Many, many people DO have to take pain meds for RLS. You should google "Appropriate Use of Opioids in the treatment of Refractory Restless Legs Syndrome" a ground breaking paper that came out last year, co written by RLS experts and doctors that I have known for years. Opioids are a perfectly good treatment, everyone is different, and some have no other alternative. They have to put that on the label. Again, all we can do right now is dull the sensations, we are not at the point, not even close, to a cure. But we ARE closer to better treatment, as we fight the "opioid war" in the US. 15 mgs of codeine is a SMALL dose, the SMALLEST. if I told you what I take, I guess you would faint. There is a difference between addiction and "tolerance or dependence". We all have to use what works for us. I would say the 15 mgs is not enough. I work with the Pain News Network in the US. We are fighting for our very lives in the US, and opiates, when used correctly, have way less side effects for a LOT of people than the anti convulsants, dopamine meds, lyrica, etc. It all depends on the individual patient.

[Eryl in reply to nightdancer]

But I know how to 'cure' mine,and others know how to 'cure' theirs, by adopting a low carb diet, and not causing it in the first place rather than become a slave to the easy option of 'big pharma'.

[Hidden in reply to Eryl]

Its not exactly a cure what you are doing, its still what would be called a treatment, If you stopped doing the diet then your RLS would be back. I know a few members have tried all sorts of the diets posted on here, and not worked. Its not a help for everyone, so in the mean time many of us take meds and be a slave, and i wouldnt call it an easy option at all.

[nightdancer in reply to Eryl]

THAT is not a cure, it is a treatment. If you went off the diet, you would STILL have RLS, wouldn't you? There is no cure, but we can find TREATMENTS that help us if we are lucky. Diet helps SOME people. The thousands of RLSer's I deal with, mostly changing diet does not help, I think there are many things going on with RLS, and no one thing can "cure" it. Different triggers for different people. I am glad the diet helps you, I have tried it religiously, and nada. Same for many people. So, we all have to do what we have to individually, but we do not use the word cure in the RLS community, unless we say we are still looking for one. Same thing as insulin. Insulin does not CURE diabetes, but it TREATS it. A person still has diabetes even if their sugar is at the right level for that day. They are not cured any more than a person with RLS is. Taking meds, and I have tried anything you can mention in the last 28 yrs since I was diagnoses, and it is insulting to call the "pharma route an EASY OPTION. Most people here ARE on meds, and not because WE WANT to. Nothing about RLS is easy.

[Eryl in reply to nightdancer]

Insulin is a hormone produced by the human body. Type 1 diabetics have defective pancreas which doesn't produce insulin, or does not produce enough, and need insulin supplements. Type 2 diabetics eat a bad diet and generally live unhealthy lives so that they need more insulin than their body can produce. With exercise and a low calorie diet, type 2 diabetes can be eliminated.

Whether you call a diet a treatment or a cure, it stops RLS occurring, and avoids medication to mask the symptoms, which can't be a bad thing. As a side effect is has benefits for health conditions caused by obesity, which is not to be sniffed at.

[nightdancer in reply to Eryl]

I am not sniffing at anything. I said some people are helped by diet, many people now. Fact of life

[Jelbea in reply to Eryl]

I was interested in your complete faith in your diet to eliminate RLS. It may work for you. For me during the last six months I have been on a low carb, no sugar diet and my RLS has never been worse. You must remember we are all different and your diet may prevent your trigger for RLS but this does not work for very many of us who have tried many, many things over decades and still not found anything which is our trigger. May your diet continue to give you peace.

[Eryl in reply to Jelbea]

I had also found that I am sensitive to E202 preservative (potassium sorbate), Aparrently all the sorbate food additives have a reputation for causing neuro problems. The trouble is that E202 is in almost every margarine, and in a lot of 'wet' foods, like sauces, dips and spreads. I've even found it in 'gourmet' battered frozen fish, so it can be hard to pin down, and it makes eating out a nightmare as many commercial products have it to prolong shelf life.

[Wanman4 in reply to nightdancer]

I am much like you, we tried all the go to dopamine treatments. As a result I started augmenting almost immediately on all of them. Since following the article you sited in you post I am living almost a totally symptom free life! No more legs going crazy when sitting down. Before beginning the opiates I was considering checking into a hospital, to get some sleep. But being a retired Mental Health Professional I new that they would not treat me for just sleep deprivation! After trying three sleep specialist, a pain management Dr, and three PCPs. Thanks to finding a PCP who would treat me with the Opiate Protocol I am no longer having thoughts of ending my life under a Drs care in Portland, Oregon. As for the potential for abuse, I know if I abuse my treatment protocol he would stop the treatment, as a result each pill is very precious to me. As a result, I’ve never had the urge or thoughts to waste a pill, as the results of ending out of meds before my next Drs appt is not an option for me! *** Good luck to everyone who suffers as bad as I do without this Protocol. I would urge you to give it a try if you can find a Dr willing to do so. *** Reminder you must take a copy of The before mentioned Protocol to educate your Dr, as well as their nurse! 😘😘😘

[Hidden]

Firstly you cant augment taking codeine. If its not working then go back to your doctor. Codeine is a pain med that can help with RLS as can all strong pain meds.

[nightdancer in reply to Hidden]

Exactly. Pain meds and augmentation do not belong in the same sentence and that dose is LOW.

[davidadill]

For the last 300 years, codeine has been known as the most effective treatment for RLS. I use 24mg just before bed every night. At first 16mg was enough, but that quickly failed. After about 6 weeks I have to take a bread for a week or two in order for the effectiveness to return. I have been cycling like this for about 14 months. The first night I take the codeine the efficacy is poor, but the second and subsequent nights it works well. Apparently there is some cumulative benefit. When combined with Gabapentin it works longer. I am currently on week 9 and it is working perfectly. 100gm of Gabapentin at 8pm and another 100mg at 11:30 along with the codeine. Gapapentin takes hours to become effective, so it needs to be taken in advance. I also run in place for 2000 steps (about 11 minutes) just before bedtime. That is also my solution if I am awakened with RLS. That always quiets my legs for 2-4 hours, at least.