My experiences on the effects of; lifestyle changes, supplements and drugs while trying to combat RLS.

[nathanwilde]

**Disclaimer - I am not recommending you try anything at all without doing your own thorough research. Do not take mine or anyone's word for anything. Research things for yourself first, have a talk with your doctor and then make your decision. I chose to experiment with these things because I felt as though I had no other choice and was very desperate. Everything I write here I am trying to bear in mind that 90% of the people who read it will have stumbled across it on the internet. They won't reply and won't register. They might be inexperienced and not as clued up or in control as some of the existing members here are, so please don't feel as though I am insulting your intelligence. This is all about MY experiences, and what has worked for me may not work in the same way for others - we are all different**

Hi all.

Long time sufferer here, can't remember not suffering with RLS and I am 30 now. I would say I have it quite severely. Not only do I get it in the feet, I also get it in the hands (the webbing between my fingers) and in the gums, which makes me want to dig my nails into my gums and I often walk around with my jaw clenched.

When it's bad I find it impossible to sleep. It is such a frustrating feeling being tired but having an itch you cant scratch. I feel for all off you who're also suffering.

The good news is many years of serious research and experimentation and I have found ways to manage this to the point where life is good again.

Do I still get it? Yes I have it all the time, but when it gets awful I am able to bring it down, and when it's down it is manageable. I think this is the best we can ask for.

First of all, quit the following:

- Smoking:

The nicotine withdrawal give me intolerable RLS which lasted for weeks after the day I stopped. Nicotine will give you an instant relief from RLS, which is probably why I got hooked - but two or less hours later, the withdrawals begin and the RLS comes back with vengeance, up to 100% on the RLS scale. This is the worst period of RLS I have ever had.

- Stimulants

You have to accept that the coffee you enjoy in the morning has to go. You cannot be free of RLS and drink coffee. In my experience it is impossible. Not only does the coffee give mild RLS when I drink it, but once it wears off (4-6 hours later) the RLS will get worse, and seems to stay bad for at least 3-4 hours afterwards. I would say at this point the RLS is at about 50% on the scale. The problem is caffeine is also addictive. The withdrawals aren't as bad as nicotine, but you will suffer with worse RLS for a few weeks after you stop.

- Antihistamines:

Bring on bad RLS which lasts for 8 or so hours.

- Antidepressants:

Some SSRI's & SNRI's (Venlafaxine is what I tried) As above

- Cold medication (Sudafed etc):

As above

- Melatonin (Natural sleep aid):

Tried this three times and each time had much worse RLS. Reasearch should be done as to why, I couldn't find anything.

- Stress

It makes it worse, try to stay calm.

- Addictions

Any withdrawals seem to bring on RLS. But it does vary depending on the addiction. Grit your teeth and go through the withdrawal if you have an addiction. It's worth it, you can do it.

- Sugar

If you have a real binge (I'm talking 2 bags of haribo style binge) I have found it to worsen RLS by about 10-20%. It's not a huge trigger, but it is best avoided for those of us who suffer badly.

Cutting these things out of my life reduced RLS significantly for me. I went from a wreck to semi-functioning human within 6 months. I have never gone back because I can't go through that withdrawal again. I've been this way for the last 9 years or so, and yes I still suffer with RLS but I no longer have those weeks where you've barely slept and you end up in tears losing hope anymore.

Now however, I have found some things to cure RLS to varying .degrees. When I've accidentally triggered my RLS I will resort to one or a combination of the following:

- L-Trypotphan:

For me it can reduce RLS by 20% or more. It's side effect free and natural. Worth keeping on hand.

en.wikipedia.org/wiki/Trypt...

- 5-HTP:

As above (It works in the same way as L -tryptophan as a precursor to seretonin so don't take both together) It affected my appetite though (making me less hungry) and as a sportsman this was not beneficial to me, though it may be a considered a good thing if you're dieting.

en.wikipedia.org/wiki/5-Hyd...

- L-Theanine:

Another natural amino acid, It's found in green tea and has a number of health benefits. Relaxation being one of them. Unfortunately it's no RLS cure, but I'd say it does reduce the symptoms slightly, perhaps 5% or perhaps placebo. The reason I mention it is because it is very effective at reducing the RLS effects of caffeine. If you have had too much caffeine and it's triggered your RLS then try taking some L-Theanine, that's where it seems to have it's biggest effect. You can also combine it with any of the other remedies on my list for added effect.

en.wikipedia.org/wiki/Theanine

- Valium / Xanax (benzos):

Reduces RLS by about 70%. However this is a super addictive drug so it has the potential to be an even bigger problem. I moved on to another cure.

- Opiates:

Limited effectiveness. Codeine around 30% effective. DHC was more effective in higher doses to about 50-60% but again, risks outweigh the benefits in the long term.

- Pregabalin (Lyrica):

Makes you feel amazing and reduces RLS by about 50% but serious danger for addiction for me, so I moved on. I deemed it not worth the risk bar once in a blue moon relief (same for benzos or opiates).

- Cannabis:

Someone I know, who happens to have the exact same symptoms I do says he has found an effective cure for RLS. CBD products do not have any effect in my experience it is the THC which has the effect and it can reduce the RLS up to 90% and lasts for 2-3 hours at a time. This combined with L-Tryptophan will normally put the person who isn't me asleep and give him a good rest. He says you must have an iron will though, only use it at night time when the RLS is at it's worst and always be careful. He says do not mix it with Nicotine, for the reasons I've mentioned with addiction. You can cook and eat it or use a vaporiser. Obviously there can be big down sides to Cannabis use, so if you're considering it then definitely be careful and do not let it become a daily habit - when used responsibly science has proven it to be very safe and when compared to some of the prescription drugs we have been prescribed (DHC, Tramadol, Valium etc) it seems almost laughable that it's illegal, but it is, so be careful.

- Noopept:

I tried this for a completely different reason, but I noticed it would reduce RLS by about 50% while I was taking it. It was legal to buy, not sure if it is any more. There should be funded studies into this, as it would be a very safe long term aid for RLS.

en.wikipedia.org/wiki/Omber...

- Kava Kava:

This is a natural calming drug, I'd describe it as the opposite of caffeine. I'm not sure if it is still legal to buy, but it reduced RLS by 20% or so for me. Edit: It seems to be illegal now. I find this so frustrating when something natural, safe and medically beneficial is suddenly made illegal. Either way, it does still seem to be available online. Research should be done to find out what it is Kava Kava does in the brain to combat RLS.

en.wikipedia.org/wiki/Kava

- Kratom:

It's another natural drug made from tree leaves. It's just this year been made illegal in the UK (thanks guys!).. I used it for a while and it did reduce symptoms by up to 40% however it was expensive, difficult to prepare and had other side effects like nausea. There's also an on going debate as to weather it's addictive or not. It makes my list though as there should be some studies into how and why it's effective. Perhaps we can find a pattern between these drugs.

en.wikipedia.org/wiki/Mitra...

I have tried several doctors but always got 'the look', you know, when they just do not understand at all. I have been given opiates etc, but they give limited relief and will become addictive and eventually make you worse.

It's worth mentioning the following also:

- Vitamin Supplements (B complex, Viatmin D, E):

I have not found to be useful at all at any dosage. Might be worth a try, if you're deficient then perhaps they may help.

- Exercise

I can't tell if it makes a difference or not - I have to be honest. I do exercise very regularly. I am a boxer and enjoy sports. It's definitely not a cure but it has so many other benefits that I would still recommend it anyway.

- Massage

Only provides relief while the massage in ongoing.

- Mental

I don't know why or how, but thinking about RLS makes the symptoms worse. If you manage to get your mind off of it you will realise that you actually haven't thought about it for the last hour or so. This doesn't work at night time, but if you've got RLS during the day sometimes just occupying yourself for a while can make you forget about it for a while.

My tactic is to just keep rotating the drugs making sure you're not doing any of them more than once in 10 days. It usually means I have something to fall back on if it's going to be a bad night with no risk of addiction.

It's not ideal but it is better than taking a regular prescription for drugs that can cause augmentation amongst other issues. The natural remedies do work and can be stacked with the other drugs if you're struggling. Always be aware of addiction, if you're having to up the dose to get the same effect then you're becoming addicted. Don't risk it.

I hope this helps someone. I know how horrible RLS can be.

My plan is to put together a huge list of everything helpful, and try to figure out what it is they all do that helps - like connect the dots - in the hope of passing the information on to researchers in the hope of aiding them with the creation of an effective safe medication.

Good luck all.

Edit to add:

I forgot to mention iron.

Iron deficiency is very common, and has been linked to RLS. That's why many pregnant women experience RLS.

Iron is the most common deficiency in the world, without enough iron your body isn't able to properly regulate branched chain amino acids in the blood brain barrier which compete for entry into the transporters against neurotransmitters. By adding enough iron, you will ensure that your body can produce enough serotonin and other neurotransmitters so that your body can properly regulate it's self.

Iron Bisglycinate, 14mg taken twice daily with food will help to rule out an iron deficiency. Take 1000mg vitamin C with it as this will help with absorption of the iron.

[Hidden]

Hi and thanks for the info. In what way did 5-HTP affect your appetite (worsened it, increased it, etc.)?

[nathanwilde in reply to Hidden]

Hi Jess. It takes away my appetite and makes me feel less hungry. I didn't want to eat dinner for example. I've read that this is a side effect that doesn't happen to everyone though.

[Leelee49]

You say pregabalin makes you feel amazing, I’m on that now, only been on for 2 weeks though, swapped from gabapentin, how long will it take to make me feel amazing? 😊 Thankyou for all the info aswell. 👍

[nathanwilde in reply to Leelee49]

The tablets I had were 300mg. Each time I took one I felt great (almost drunk). Though it definitely helped my RLS I would not recommend staying on this medication as it can be very addictive with very harsh withdrawals, and if you're an RLS sufferer those withdrawals will be 10x harder than it would be for anyone else. Best saved for one off occasions for those times when RLS makes you want to cry or punch something! Hah.

[nightdancer in reply to nathanwilde]

Lyrica certainly does NOT do that for everyone, depends on what else you are taking and how the different meds and supplements interact with each other. Lyrica never made me feel anything but shaky and did not do one little thing for my RLS

[nathanwilde in reply to nightdancer]

Sorry to hear that it didn't help with your symptoms as it did mine.

It is currently being studied as it has exploded as a recreational drug so I guess what I described is common, if not the effect on everyone.

"Pregabalin, known as 'new valium', to be made class C drug after deaths"

theguardian.com/society/201...

"Pregabalin: Doctors call for 'new Valium' to be restricted amid sharp rise in abuse"

independent.co.uk/news/heal...

What dose did you take if I may ask?

All the best of luck finding a cure!

[nightdancer in reply to nathanwilde]

Way back when, 300 mgs. 150 mgs did not work for RLS, and as usual they always want to UP the meds, so that is why the 300, and it did not touch my RLS, no matter what dose. It is not a popular med in my groups.

[nathanwilde in reply to nightdancer]

So sorry to hear it doesn't do the job for you.

I actually had a terrible day yesterday, ended up drinking a couple of coffees as I had a very important day to get through, knowing in the back of my head it would trigger my RLS.

I decided to use the 'nuclear option" as I like to call it and take 300mg Pregablin and it definitely produces significant results for me. RLS had almost gone, stress gone, felt productive and euphoric.

it just goes to show how one cure will not fix all I guess. That's why I think it's so important we get all of the information of what works for others and get it all in one place so that new suffers stand a good chance of finding what works for them.

All the best with your battle!

[Safehands in reply to nathanwilde]

All Pregabalin did for me was give me even worse chronic insomnia that I already had! I was prescribed it for a neck problem and once I started taking it nightly I was going to bed between 01.30 and 03.30 and still getting up around 07.30. And didn’t go to sleep during the day! I was due a repeat prescription of it a few weeks ago and read a big article in the paper about how people had had a terrible time on it, completely addicted, no sleep etc. I refused to take it any more and have had it taken off my repeat prescription .

[Dcb55 in reply to nightdancer]

Me too. Made me fall all the time.

[Hidden in reply to nathanwilde]

I like that suggestion. There are some medicines I use when, after a bout of dealing pain and little sleep I just need a break. One or twodays is all I need, then my coping ability returns and I'm ready to fight again. My doctors know this is how I use my pain meds and are more willing to prescribe for me-a few at a time that I don't use up quickly. irina1975

[nathanwilde in reply to Hidden]

Thanks irina, I wish my GP was as understanding. I've given up going as I just feel insulted.

Being in the industry (not a doctor) myself I thought perhaps they may be more willing to listen to my view or consider the information I took with me, but the best I got was a print out from their intranet, and on subsequent appointments I was prescribed Tramadol and then Dihydrocodine

On the next visit it was dopamine agonists. I took the prescription but at 30, I am very worried than in a few years time I will suffer augmentation so I decided to use that route as a very last resort.

All the best to you in your battle!

[Hidden in reply to nathanwilde]

Hi nathan. I think the thing that helps me with my docs and medicine is that I've had the same doctors for a long time minimum 4 years. Also they are all at the same hospital and all my records are easily pulled up by any doc I see. So they can see what I take/who prescribes what etc. I can also access my records online. They have seen that even after surgeries I don't ask for a lot of medicine and at times turned down post op rx to take home. I don't try to refill early, use the same pharmacy and as I do take Xanax for anxiety I ALWAYS lock it up in a file cabinet whenever I leave my apt. Too many maintenance passkeys and I don't want to risk having them stolen and then having to explain. This probably is a little "OCD" of me but I don't want problems with my meds. Too much stress. (Best to avoid 'the dog ate my homework' story.LOL). I also never walk away from the pharmacy counter without opening my meds to verify that I received the right prescriptions. This is a lot of jumping thru hoops that shouldn't be necessary but with all the changes in the air, getting meds we need may come to this. I just want to avoid any med problems if I can. Also, I really hate "getting the look" re rx-like I'm trying to pull a fast one! Take care. irina1975

[Dcb55 in reply to Hidden]

In the US there are several doctors at major research institutions (Mayo, Johns Hopkins, Vanderbilt, and and several in CA who have written a paper as the basis for trying to change policy on low dose opiates for refractory (I.e., nothing else works) RLS. The principle is that it is rarely addictive if taken for RLS, you do not need to continually increase the dose (once you‘be got it right) and it is incredibly affective. I have a pain contract with my dr in Vanderbilt (I drive 5 hours there every three months), only he can prescribe pain meds for me, only one pharmacy can fill them. They write the script for one month at a time. I have to undergo random drug tests (to be sure the drug is in my system and I am not selling them (the last tests wasn’t even sensitive enough to the low dose I take.). I take 7.5 to 10 mgs of hydrocodone a night (sone before bed, sone at bed) and for plane rides and long car rides. Otherwise I try to get up and walk around and work standing up which is manageable for day time flares. I have opiate induced insomnia (they make me hyper alert) so I combine them with benzodiazepines for sleep at night. Don’t need to sleep on planes and cars.

I’ve been doing this for nearly 6 months. No painful augmentation inside 10 months or weird behavioral stuff like with the DAs. No falling over like with lyrica. Gabapentin didn’t have an afffect on my RLS. I do all the life style stuff except I still take a low dose of an SSRI which really makes my life easier.

I know the risks of addiction but these doctors feel they are low if you follow the routine. I never take hydrocodone for anything else. I break up the dose and if it’s a day when my legs calm quickly, I don’t take all of it. It’s the clonazepam I worry most about because I don’t think I get as high a quality sleep with it, but I do get a full nights sleep.

Sometimes I fall asleep during the day like a rock and I think that is the side effect of the sedatives. I don’t like it.

If they would make medical marijuana legal in my state I’d use that to fall asleep and get off the benzos. The only kind you can buy around here instead a) illegal and b) makes me feel crazy, not relaxed.

But I feel confident that that doctors have my back on the opiates and they work 100% at night, like a switch turning off the impulse to twitch and move. It’s like I’ve gone from nightly hell to regular person.

It takes more on airplanes where the twitchiness is combined with pain — that is currently my biggest challenge because I’ve been flying a lot. And I don’t want to take sedatives with it and go to sleep because I want to arrive where I am going awake and ready to work.

The precautions everyone around me takes (including me) helps me feel secure. If I found my self taking the drug for other reasons or raising the dose it would be another story.

[Hidden in reply to Dcb55]

This is the best info I've received in a long time. The guidelines they have are very reasonable especially for those of us who really just want help and aren't trying to pull any punches.

I am in Atlanta and Vanderbilt (Nashville) is an easy (2 1/2 hours) drive for me. Also my sister worked at Vanderbilt in the 80's. I moved there for about a year to stay with her for personal reasons, got a Tennessee nursing license and worked in the Operating Room at Vanderbilt while with her.

If you feel comfortable, would you PM the information I need to call for information and possibly make an appointment?

Thank you so much, Dcb. Take care irina1975

[Hidden in reply to Dcb55]

Addendum to my first reply below. The Universe provides! Your info is timely because I really need knee replacements and have been procrasinating. I had some other med situations to deal with first but the knees really need to be done. My big worry is having the RLS pain alongside "post-op" knees and I know I can't depend on the orthopedic surgeon to medicate mefor the RLS.

Normally I'm like you- I get up, walk around, etc. but that won't be possible after the surgery for a while. It has been very worrying for me. irina

[Joolsg in reply to Leelee49]

I am on 150mg of pregabalin and they certainly don't make me feel amazing! Maybe if misused at higher doses? But then I'm on oxycontin and don't experience any feeling of euphoria or being high on them either ( I'm on 25mg a day)

[nathanwilde in reply to Joolsg]

My tablets were 300mg each, definitely made me feel tipsy, like talkative etc. It is at that dosage that I felt improvement in RLS. I haven't tried any other dosages.

How does 150mg work with regards to RLS? Were you prescribed it for RLS specifically?

The only prescription I could get from the doctor were opiates but they're both more dangerous than effective in my opinion. Though still useful in emergencies for me.

All of the other drugs I have experimented with I have had to source myself. I have done this after researching their actions on dopamine/gaba/seretonin and given them a try out of desperation.

[Joolsg in reply to nathanwilde]

Hi Nathan

I am under Kings College Hospital, London- professor Ray Choudhuri.

After going through dopamine agonist withdrawal, I was prescribed OxyContin 10mg twice a day and 5mg at night. After suffering severe panic attacks on the OxyContin and still getting RLS every night, pregabalin was added slowly up to 150mg. Pregabalin takes 3 weeks to become effective so one off doses won’t help.

OxyContin at low doses for RLS is not addictive ( unless someone has history of substance abuse). The same with pregabalin.

I have very severe refractory RLS so even taking OxyContin and pregabalin every night doesn’t stop RLS. However, I now manage around 4 hours sleep in 1 hour slots between 12-8. I can go back to sleep for a few hours in the day as I’m retired.

I hope you find a consistent drug regime that helps- maybe try cannabis or Kratom?

Good luck

[nathanwilde in reply to Joolsg]

Hi Joolsg.

Sorry to hear you also suffer with RLS. I've been through some very dark periods over my 30 years of suffering with it. I wouldn't wish it on anybody.

Please PM me, I'd like to give you my email address so that you can pass it on to professor Ray Choudhuri as I would strongly, strongly disagree with what he has told you here.

It is true that Pregabalin can take up to 26 days before it has had chance to alter the brain pathways and treat anxiety - but this does not translate into it's anticonvulsant properties, and I can tell you with 100% certainty that - for me atleast - a 300mg dose of Pregabalin will reduce my RLS significantly on the first try. I would be willing to prove this in a lab if required.

The part I am most worried about though is saying that Pregablin isn't addictive. It's a new drug with an altered structure to Gabapentin. Initially it was believed that it would have "less potential risk of abuse"

but real life use is showing the opposite. If you do some research online you will find horror story after horror story, even lawsuits.

I would urge caution and research.

I also worry about OxyContin, you're taking a low dose at 10mg, so possibly he is correct in saying the risk of addiction is low. The problem is it doesn't matter what dosage you take, at any dosage you will build tolerance - there isn't any avoiding this for a majority of users. Most will eventually need more to get any relief, and then you're taking a large dose, and before you know it you're taking a dose large enough to become addicted. This is how addiction works.

I do not believe the doses you're on are enough to remove RLS symptoms. Try a one off dose of 60mg Oxy, and see if it has a more dramatic effect. I would say it is the same story with Pregabalin. If you feel comfortable with it try 300mg and see if it works for you. (maximum daily dose is 900mg for reference).

As I said I would very much appreciate a chat with professor Ray Choudhuri. I don't profess to know more than he does of course, I am no professor. However, with 30 years suffering, 15 years of active personal research and a Medical Sciences and Engineering degree I would hope that perhaps we could make some headway somewhere.

Unfortunately my profession forbids me from using cannabis regularly, however I have used it, and when I did I found it to be one of the most effective treatments I have tried.

[Joolsg in reply to nathanwilde]

Hi Nathan

If you are in UK, I’m sure you are, then you will know that the chances of getting a response from an NHS neurologist are zero. Kings are so busy it took 9 months to get an appointment and thereafter I get a telephone follow up from one of his registrars.

I have bought all the medical text books on RLS so feel as up to date on it as I possibly can be.

I too take supplements including l theanine and Taurine.

I am aware pregabalin can be horrendous and have read the online withdrawal reports.

I have already been through DAWS so have no intention of putting myself in that position again.

However, needs must, and I have 2 choices- commit suicide or take the OxyContin and pregabalin.

I hear what you are saying about taking pregabalin and OxyContin on an as needed basis ( for me that’s every single day) and in higher doses.

I don’t wist to increase my doses.

I also don’t take sugar, alcohol or caffeine and follow a strict exclusion diet and it makes no difference.

I wish you all the best in your mission to solve the RLS cause and cure.

Jools

[nathanwilde in reply to Joolsg]

Jools, unfortunately I do indeed understand exactly what you're saying on all fronts.

It's quite easy to lose hope at times but do not let it beat you. It's the exhaustion and (probably) low dopamine levels telling you that you can't go on, but you can. People are becoming more aware and I have every belief that this is a curable illness.

Have you considered a rotation schedule? For example taking one drug for 10 days, another for the next 10 and so on always giving the drugs enough time to fully leave your system before going back onto them again? It would be worth having this discussion with your doctor if you haven't already.

I wish you the very best. Please keep me informed of any new info you come across. I hope to have a website up and running very soon. I'd like to compile as much anecdotal evidence as I can while spreading awareness at the same time.

[Joolsg in reply to nathanwilde]

Hi Nathan

I am familiar with the drug rotation system to avoid tolerance and to ensure receptors are given down time, but right now I think I’ll wait before I go down That route.

There are a few people on here who do drug rotation.

[nathanwilde in reply to Joolsg]

Drug rotation is the only way I've been able to keep my career and life together I am saddened to say.

RLS is such an awful syndrome, compounded by the lack of understanding in the general population.

For those that suffer severely it can very understandably make people give up and feel suicidal. I've certainly been there.

I won't go into details here but I did give up hope at one stage and did something stupid. I now have reduced use of my left hand. I regret this every day, not because of the hand but because of the guilt and embarrassment.

The exhaustion caused by disrupted sleep over long periods of time causes an awful lot of stress and subsequently depression compounded by some unfortunate life events made me make a choice I harshly regret. I hope anyone who may read this will stay stronger than I did. I can tell you the very second I made the mistake I instantly regretted it.

What I am trying to say is it seems we're not alone, we're doing the right thing by communication between ourselves and helping the best we can.

I think the best chance of finding a cure is creating an awareness. RLS is fairly common but it's rarely disabling so it's hardly on the radar. If we can create enough awareness for the drug companies to see the potential profits (very large customer market) perhaps they might invest the money we need to get the studies and research done.

Thanks for replying to my post and if you ever want someone to talk to that has shared experience of this awful syndrome then you are always welcome to PM me.

Nathan.

[Joolsg in reply to nathanwilde]

Cheers Nathan,

You’ve certainly been to hell and back. I agree with everything you say!

Take care

Jools

[Hidden in reply to nathanwilde]

I disagree with your comment part where you say codeine and tramadol are both more dangerous than effective. Have you read the post from Jools where several doctors and well known ones who know their RLS stuff have put together a paper on opiates for RLS. Opiates for some people are lifesavers without them they wouldnt be in this world.

[nathanwilde in reply to Hidden]

Well, in my experience I have found them to be less effective than other safer methods. They don't fully reduce the RLS symptoms, they work up to 50% reduction with high doses in my case.

Coupled with being some of the most addictive drugs in existence with tolerance being built rapidly and a notoriously difficult and long withdrawal and detox period I will stand by what I say - although I would agree they have their place, my doctor prescribed them to me as a very first line of treatment! I don't agree with this personally, I do think there's a better way to start.

They also come with side effects for many (nausia, histamine release, hangover).

Not to mention you are unable to drive your car for 24 hours after taking them. The police can do a roadside drug test and you can lose your licence if it's found in your saliva.

They have a use within a rotation schedule, but there are safer more effective alternatives.

It's the same story with benzodiazepines pretty much.

[Hidden in reply to nathanwilde]

Maybe that was your experience of taking them. Its not everyone's experience. Opiates are additive you start to crave taking them and not taking them to give the relief they were intended for, or you have addiction problems then of course no one should take them. And i will take what the RLS experts are saying for opiate use for RLS. All meds can have side effects even the humble aspirin.

[nathanwilde in reply to Hidden]

Text deleted - unhelpful comment. (Kaarina - volunteer)

If opiates work for you or others then I am glad for you. I have never once suggested that what works and doesn't work for me will create the same effects in others - just the very nature of RLS it's self differs between person to person.

You are absolutely free to take whatever whoever says as you wish. It is truly your choice.

I would argue however that (even though you have said I'm not) that I AM an RLS expert (as for as my own RLS goes), probably far more than most doctors who do not suffer themselves.

It's far easier to study yourself than it is another, so I will trust myself above all others.

I would never ask anyone to trust a stranger on the internet over their doctor's advice. I just wanted to put a brief overview of the things I have learned over the years in the hope that they will help others (hence the post title). I have found GPs to be less than serious about RLS when I have spoken to them.

I tend to get the feeling that they think giving me a nice prescription for some happy drugs will make me forget about the RLS.

I would rather explore what it is about these drugs, what their actions are - especially in relation to dopamine receptors - that connect them. I then hope to bring my findings to researchers.

They currently do not receive anywhere near enough funding to develop new drugs, so us helping them is the best chance we have.

rls.org/research-grants/cli...

As you will see most studies are limited to trying to overcome augmentation, or the dangers of drugs already being prescribed such as Opiates - which if you follow the link you will fund a safety study is currently underway....

I am not happy to settle for a square peg in a round hole when it comes to RLS. I do not accept that opiates are the best and safest cure at all. I fully believe that with sufficient study, a safer more effective medicine can be produced, and my mission is to help.

Good luck with your treatment.

[nightdancer in reply to nathanwilde]

nathanwilde, if you are going by the RLS Foundation ONLY the one on the USA I see your link) trust me on this one, when I say there are a lot more studies going on, besides on augmentation, for RLS. The foundation is also supporting studies (very small ones, one by Dr. Ondo on opiates and RLS) The BIG one we keep referring to that is the NEW paper, out 3 days ago, is posted on the US RLS Foundation and many other sites like the Mayo Clinic. These studies were over 3 years long, some shorter, double blind, placebo used, etc. BUT, the latest research is ALL about augmentation AND finally on opiates, which we desperately have needed for years and years. Allowing opiates to be used in the treatment of RLS, officially, is a huge step and we must not dismiss it. So, you may consider yourself "an RLS expert". An RLS expert MUST be open minded to all treatments for the disease, or you will only go so far. I am 61, have had RLS since I was 14 and broke my back. After managing RLS groups for 27 yrs, the first ever online RLS group way back in yahoo group days when email was the only thing, I fancy myself a little as knowing what I am talking about, too. I have become an advocate for chronic pain issues and RLS for sure. But , you are an "expert" on yourself, NOT RLS as a whole. There is never a day we cannot learn something new.

[nathanwilde in reply to nightdancer]

Hey nightdancer.

Sorry I definitely came across the wrong way.

Because I was insulted by an uncalled for defensive post above (which has now been edited) I was disagreeing that I AM an RLS expert - when it comes my my own RLS. It would probably have looked more clear before the original post was edited.

I am not an expert in your RLS, you are! My point was that I do consider myself an RLS expert for my RLS, and this topic I wrote is about MY experiences.

I only said that I didn't find opiates to be the best option. I don't know why some people have been so defensive about it

[nightdancer in reply to nathanwilde]

Everyone has their own experience, there is a difference between addiction and tolerance/dependence on MANY classes of meds. WORST withdrawals I have observed over the years is actually dopamine withdrawal. For about 50% of all my people, if there were not opiates available, there would be nothing that worked for them. Severe, refractory, hard to treat RLS is hard to control, but mine is, for example, and have to AGAiN say, that I have been on the same meds, at the same doses, and even reduced some of them with NO problems. But just because one is taking low dose opiates does NOT mean you WiLL get addicted, dependent? yes, Tolerance? yes. A Diabetic is dependent on insulin, a Parkinson's patient is dependent on their PD meds, and so on. If you have to take iron every day, your body is dependent on them.

[nathanwilde in reply to nightdancer]

I agree with you, but everything I write here I am trying to bear in mind that 90% of the people who read it will have stumbled across it on the internet. They won't reply and won't register.

They might be inexperienced and not as clued up or in control as you are, so please don't think I am aiming my concerns at those who have tried all other options - it is aimed at people who have first started to suffer and are now looking for answers.

[Joolsg in reply to nathanwilde]

Hi Nathan,

The point you make on not being able to drive and losing your licence if on opiates isn’t correct.

The law has been updated but you are allowed to drive if you are not adversely affected by the opiates and you have a letter from your doctor confirming the opiates have been prescribed.

I take opiates every day & night, am not in the least affected by them- no high, no nausea, no dizziness etc. I drive.

I have a letter from my GP confirming my prescription which I carry with my driving licence.

Also, Elisse would not edit her post or call names, honestly,- she is one of the kindest, well meaning people on the site. I saw her post almost immediately after she posted and it remains the same.

I know you also mean well so best to start the New Year in a positive, conciliatory manner.

We can all help each other by sharing our experiences.

As you know, a lot of us are on opiates because we have reached the end of the line- there are no other drugs/ supplements or diets available to us.

Those of us on opiates know about addiction & that the risk is low at the doses used for RLS & if there is no history of substance abuse. We are also aware of tolerance.

Elisse is one of the most informed on here and she was simply pointing out the difference between addiction and dependence.

Hope you can see this.

Jools

[nathanwilde in reply to Joolsg]

Hi Jools.

I didn't want to include all the details of that particular point because it's quite a long point to make.

You are correct, you CAN drive legally while taking opiate medications. However it's not always that simple in my opinion.

Firstly: The RLS patient may be unable to obtain a prescription for opiates from the doctor and they have obtained the drugs from elsewhere (common).

Secondly: You must have less than 80µg/L morphine in the blood, and as new/inexperienced/addicted users of the opiates begin to build a tolerance then people will commonly up their dose to get the same relief. You're then taking more than your doctor prescribed.

If you're like me, then you need to take an extremely high dose of opiates to get any relief, so I would certainly be over the limit.

So it's not so simple and as I was trying to be brief I thought it best to word it the way I did.

You are correct though, if you have a prescription, aren't affected, and have less than 80µg/L morphine in the blood then you will be okay.

I also never said Elisse edited her posts, an admin has deleted the offender's posts already.

I still feel that anyone who thinks opiates should be the first thing a doctor prescribes to a new RLS sufferer is wrong, doctors also think it is wrong. I can't change my view. That's what they were disagreeing with, and because I didn't change my opinion they turned to insults.

You say those of us on opiates know about the addiction risk etc, and I believe you when you say you do, and others do, but a lot do not! That's why there are hundreds of thousands of known opiate addicts..

This is what frustrates me about this forum, it would seem some people don't consider that the vast majority of people reading anything here are not going to be members. They are going to be people searching google, they may have NO knowledge at all. That's why i write things the way I do. It is not an insult to people who're experienced, I'm just trying to protect those who aren't.

[Joolsg in reply to nathanwilde]

Understood. I didn’t see the offensivepost that was deleted by the admin.

That explains a lot.

I also hadn’t given much thought to people using Google and this forum irresponsibly.

I also had no idea people sourced opiates illegally to treat RLS- naive I admit but I am an oldie!

Jools

[nathanwilde in reply to Joolsg]

Cheers Jools, no worries at all.

Unfortunately it is as simple as searching google to find someone selling prescription drugs online nowadays

Unfortunately I get quite an insight into this from my career.

Thanks for understanding

Nathan.

[involuntarydancer in reply to Joolsg]

I have sometimes wondered about the possibility of drug seekers using info from forums like this one to try to convince their GP to prescribe opiates.

Separately but not unconnected, my GP recently told me that pregabalin (lyrica) abuse is rampant and it is the fastest growing recreational drug in the US.

I find it gob-smacking. Why anyone would take that drug unless they had to ...

That said, I think it is starting to work for my Rls symptoms (I am up to 175mgs and only getting very mild intermittent nocturnal Rls) and the side effects are settling down after 3 horrendous weeks.

[nathanwilde in reply to involuntarydancer]

I think you're right to worry as you say. When I was much younger I did exactly that. Luckily there were also those who gave info warning of the dangers. I think that lead me on to doing more research and through that I have always proceeded with real caution.

Regarding pregabalin, it would appear that it affects people very differently because for me it makes me feel highly euphoric, less anxious, more comfortable around people, more confident and gives me an energy boost while feeling very relaxed (and free of RLS).

But because of that reason I can never really recommend it to anyone, I think it would be a very easy drug to get hooked on - if it affects others as it does me.

[involuntarydancer in reply to nathanwilde]

Yes but Nathan as I read your posts (correct me if I’m wrong about this), you took a relatively high dose of pregabalin (300mg) all in one go - and not under medical supervision.

It is not surprising to me that your reaction to it was different from that of most on here. Anyone prescribed pregabalin for Rls will be starting on max 50mg and titrating very slowly up under medical supervision

It seems to me that your experience is not a good basis on which to judge whether to recommend the use of the drug to others.

Neither, incidentally, does your experience with opioids - insofar as you record it here. Again, you seem to have taken them not under medical supervision (at least not properly informed medical supervision) and not for an appropriate condition. That is in stark contrast to most (almost all) people who take them for a genuine case of Rls.

[nathanwilde in reply to involuntarydancer]

I'm truly sorry I seem to have come across this way. I am only trying to help.

You asked me to correct you, so here goes.

Pregabalin is deemed to be safely administered up to 900mg total per day. This is to be split into three 300mg doses taken throughout the day. So though I agree one administration of 300mg is a relatively high dose, but it isn't abnormal. I would argue that the reason you'll find so much anecdotal evidence of people saying it doesn't work for RLS (when they're prescribed low doses) is because they probably aren't taking enough to significantly reduce their symptoms.

I don't know why you say I've recommend the drug to others, I've just said in the post you replied to that I cannot recommend this drug to anyone. All I've said in my original post is that I have tried it, and it reduced my symptoms, I had side effects so I have decided not to continue. That's hardly recommending.

I would never recommend any drug to anyone, if I did, my career could be over. I have to be responsible in what I recommend or I could lose my job. I have to be very careful with what I write regarding anything medical. I can however tell others of my own personal past experiences, so that they have information to do their own research and potentially decide they wish to discuss it with their doctors.

As for opiods/opiates (as I have written earlier) I was prescribed them by my doctor as the very first RLS treatment he recommended. I was 19 at the time, I have had a repeat prescription for 11 years for Tramadol, Codeine Phosphate, and Di-hydrocodone. I have managed them by implementing a drug rotation system, which - I'm able to tell you - is something I see regularly implemented in my day job.

The issue seems to be that others here disagree with my opinion of my experience with my GP.

I visited on my first appointment at a very young age and was given a print out sheet recommending some stretches and massages, I left feeling very upset as I didn't think the doctor really thought it was a serious condition and I was suffering.

I was reluctant, but on my second visit some years later the doctor prescribed my Tramadol. I have been prescribed opiates and opiods under my doctors supervision for the past 11 years.

Knowing what I know now, I am of the opinion that this is the incorrect way to treat a new patient with RLS. I really think other options should be explored first. And this is what some people here seem to have the issue with? GPs now are informed not to prescribe opiates as a first line treatment - exactly the same as my opinion.

For the record the very first thing I write in the very opening post goes as follows:

" **Disclaimer - I am not recommending you try anything at all without doing your own thorough research. Do not take mine or anyone's word for anything. Research things for yourself first, have a talk with your doctor and then make your decision... etc etc "

I hope I don't come across in a bad way with anything I have written here, it's so hard to communicate via text as there's no body language that follows.

I do feel as though I am being given a slightly hard time here, sorry if it is my own fault unintentionally.

[involuntarydancer in reply to nathanwilde]

Yes, you did get a hard time and as soon as I posted I regretted that I did not express myself more moderately. There are people on here who have no option, given the severity of their symptoms, but to take heavy duty drugs and an attack on the drugs can sometimes seem like an attack on their choices (rather than their lack of options). I really do appreciate your taking the time to post - as I’m sure do many, many others.

I would just make the following observations:

It is extremely rare (and rightly so) for opiates/opioids to be prescribed as a first line treatment for Rls - yours is the first case I have heard of. They are usually reserved for severe refractory Rls which no longer responds to other treatments. Indeed the more usual complaint is that doctors won’t prescribe them even in truly desperate cases.

I wrongly suggested you recommend lyrica (pregabalin). In your post to me you said you would ‘not recommend’ it.

I’m not saying 300mg is a huge dose but it is a very large dose to take from a standing start. Most people start at a much lower level and very gradually titrate up (at about 25/50mg per week). I would imagine that going straight in at a dose like that might well cause symptoms which might not be experienced following a gradual increase in the dose to that level over many weeks to allow the brain and body to become accustomed to the drug.

That said, everyone’s account of their experiences enrich us all and help us, one way or another, with the choices we make in our attempts to gain relief.

[Brica in reply to nathanwilde]

Flying Nun. You make a lot of sense. I have been on all the medications with temporary results. Mirapex was the worst because of the withdrawal and its addictive side effects. I am now being treated with iron ; excellent results thus far{3 months}. Thank you Nathan Wilde for the information sharing.

[Joolsg in reply to involuntarydancer]

I’m really pleased you’re managing to get some relief at last. Pregabalin worked better than dopamine agonists in a study published in the New England Journ of medicine. The effective dose used was 300 mg.

I like to think I can decreasethe OxyContin if I become tolerant and simultaneously increase pregabalin- but

I’ll cross that bridge when I come to it.

I’ve never experienced any euphoriaor highs on pregabalin but when I mentioned the drug abuse to my daughtershe knew all about it. Apparently people take pregabalin, then fight the sedating effect and stay up all night. Clearly people who don’t appreciate how lucky they are to be able to sleep!

I really hope you get some good night’s sleep ID.

Jools

[involuntarydancer in reply to Joolsg]

I definitely would not rush to replace the oxycontin, Jools. That system seems to be working well for you and we mess with these things at our peril! I have you to thank for encouraging me to stick with the pregabalin. Yes I saw the study you mention. I’m hoping - the way things are looking at present - that I won’t need to go to 300 mgs.

Your daughter is so savvy. Mine knew nothing about it - or at least claimed not to!

[Hidden in reply to Joolsg]

I have now deleted my comment as i can see Kaarina has edited and i assume deleted some comments. So, no need for my comment anymore. Jools thank you for your comments for me, there are many of us on here who help and support and advise when we can, and your knowledge is valuable to this forum, you do alot to help others on here.

[Hidden in reply to Hidden]

Nathan no one was saying opiates to be used as a first line treatment, myself i was responding to your comment of opiates not being effective which was your experience, but i said wasnt every bodies. And they were life savers for many. If you go back and read what i said.

[nathanwilde in reply to Hidden]

No it wasn't you Elisse, don't worry it is my fault. Text deleted. Unhelpful repetition. Kaarina - volunteer.

I apologise for being blunt with my reply to you.

ID: I understand your points and fully agree, I think we agree would probably agree on a lot of things, we are perhaps just misunderstanding some of the meaning behind what's being said as it's hard to communicate via text. Very good point regarding pregabalin accustomation too.

Are you from the US? I know they are really tightening up on this over there, but in the UK it has only been an issue in recent years. 11 years ago when I was prescribed it was apparently very common. Things have changed now it seems, and I really agree that they do have a very real place for severe sufferers who've tried other options.

~~~

The admin has deleted my text here, I had explained that others had infact said opiates were to be used as a first line treatment, then they wrote insults when I disagreed (these posts have now been deleted) afterwards a lot of posts came in quite quickly and I felt a little ganged up on and I acted a little defensively with my replies for which I am sorry.

This is not "Unhelpful repetition" this is an explanation of a misunderstanding in order to avoid further conflict in this thread.

I have read the Community Guidelines here:

support.healthunlocked.com/...

And the Acceptable Use Policy here:

healthunlocked.com/policies...

I don't think I have broken any of those rules, and I am certain that the comment you have edited above didn't.

I have screen shotted this, if the text is edited again (as a lot of reasonable things I have written have by this admin throughout this thread - I have no idea why) I will be making a complaint about the abuse of powers because I don't think it's fair at all as it takes the rest of my text out of context.

You have removed some of my text and made my apology appear blunt to Elisse which isn't how I wanted it to sound.

If that doesn't work then I will need to take my input elsewhere as I wish to be able to speak freely as long as I am not breaking any rules and acting fairly as I have been.

[nightdancer in reply to nathanwilde]

We are well aware of what meds and what side effects, several of us here, after all these years. One HAS to do the research, I agree, and with what we have experienced with thousands of people. we have done suicide watches, and they have always been from dopamine withdrawal, DAWS, the dopamine agonists used to primarily treat Parkinson's. There are two sides to every story, every time. period. I know a guy who killed himself with Tylenol. So, it can be anything. opiates are not automatically an "evil" thing. It is the way some of us have to treat our RLS, and that is all there is to it , for now. I am just glad the foundations are bringing some useful information, helping to advocate for RLSer's for once, ( the one in the US). The UK Foundation has always been great.

[nathanwilde in reply to nightdancer]

Hey nightdancer.

My points are aimed at those who are not experienced as you are - the people who will find this forum by searching "RLS cures" in google - as I first did.

We have to remember that what we write here is not only seen by the experienced members, the majority of readers won't be members, they will be passers by or lurkers who read by do not wish to respond. A lot of those will be new suffers or people that do not have the experience that I am sure members of this forum have.

It may even be the very first time they have considered their RLS.

I do agree with everything you have said above.

Nathan.

[Beckonwood in reply to Hidden]

I have taken OxyContin for over 15 years and the dose was very low. I have tried all the medications given for Parkinson and also used for RLS and after period of time they ceased to be effective. I am now on Tramadol and have been for about one year. I still take a low dose. I have had RLS since I was in my thirties and am now 75. I find both OxyContin and Tramadol to be very effective and do not find them dangerous. Without them my life would be hell. I am not addicted to them and don't wake up in the morning feeling like I need to take one of the pills. I am grateful I have this medicine because it does work. Right now I am taking 3 Tramadol 50 mg. I take one at 5pm, 8 pm and the last one at 10 am. They work almost a hundred percent. I have some times when I have breakthroughs which are distressing at times. I find stress and over work really affect my RLS.

[nathanwilde in reply to Beckonwood]

Hey Beckonwood.

I'm so glad to hear you've found a treatment that works for you and that you're able to live a normal life.

Unfortunately for some of us Opiates appear not to be the best treatment. I found I had to take a dose of 180mg of Di-hydrocodone to get any significant effect, and at that dose it is a very slippery very dangerous slope. That's why I limit it's use to once in every 10 days maximum.

I also get common side effects such as nausia and constipation.

That's why I so strongly agree with doctors when they do not prescribe opiates as a first line treatment as they did with me. I really think they should be saved for when other treatments don't work.

[nightdancer in reply to nathanwilde]

As long as we remember here that we all have different reactions. Codeine and Tramadol ( tramadol is a synthetic opiate and is not scheduled as high as some other opiates) can be safely taken for years, if the same dose if followed, you are not "chasing a high". I have been on the same doses of meds for the last 15 years at least, and can skip them a coupe of days at a time to "reset" them. People can become JUST as addicted to Kratom (something supposedly all natural) as they can to opiates, it is nature's opiate, and is also a stimulant for some people. Kratom is an issue, since it is totally illegal in the UK, is illegal in Thailand, where the trees grow, and will be totally illegal in the US by the end of this year, early next year. it is about half and half right now, as to what states have it illegal in the US

[nathanwilde in reply to nightdancer]

It's sounds like you're very lucky when it comes to being able to withstand addictions and tolerances. It is a known phenomenon that some people have a far higher addiction tolerance than others with different drugs.

Given my experiences, do I feel opiates are the best treatment for my RLS? No.

Do they have a place in treating RLS in others? Yes.

Are they a solution for all RLS sufferes? Absolutely not.

If you have extreme RLS they tend to only be effective enough at large doses as anecdotal evidence has proven. Used frequently enough without giving your receptors time to recover and you will begin to build a tolerance. You will need to take an even larger dose for it to be effective, and tolerance does not necessarily develop equally to all effects. Abusers of illicit and prescription opioids, such as oxycodone (OxyContin), quickly develop tolerance to the reduction of symptoms and euphoric high these drugs produce but not to the dangerous side effect of respiratory depression (slowed breathing rate). Opioid abusers who take large doses of these drugs to overcome tolerance and get high are frequently hospitalised—or even die—because they stop breathing.

If you only have mild RLS then it can usually be resolved with lifestyle changes

So I would urge caution to any new sufferers - there are alternatives and in MY experience they are also more effective with less side effects and dangers.

[nightdancer in reply to nathanwilde]

nathanwilde, you can stop telling us over and over and over about "addiction" means. WE UNDERSTAND that part, and have for decades. Everyone who swallows a pill does not turn into an addict, that is the "drug war propaganda" and when you get deep down into it, the more dirt I find. The PSA's these days in the US are terribly misinforming. They need to tell the whole entire story and they NEVER do. I keep track of the DEA, CDC, FDA, and so on in the US. We have to follow them around and not give them an inch of breathing space when it comes to some this disgusting misinformation that they are putting out as an agenda of theirs, which would be the DEA and the pharma companies. BUT, ONCE more, not everyone who picks up a pill turns into an addict. I was married to an addict for well over a decade, I KNOW what true addiction and addictive personality can do to a person. That does not mean the people who legitimately need these meds to function, to be able to get up some days, to lead a productive life, whatever works on YOUR RLS is fine for you.

[nathanwilde in reply to nightdancer]

It's not you I am worried about, I just said in the post you replied to "I would urge caution to any NEW suffers who may read this" - it is the many other web surfers who will read through the thread and not reply or register to this board. New RLS sufferers looking for help. I do not feel comfortable not making this point about opiates absolutely clear.

I can tell you that for me, extreme RLS, the depression and exhaustion it causes coupled with an addiction can make one suicidal - from my own experience.

I wholeheartedly believe that opiates are not the best first call when treating RLS and should be saved for those who cannot find relief in safer ways, and so long as this is my thread talking about my experience I will continue to make that point clear.

If it works for you and others then I am genuinely happy for you. I have already said that what my experiences are and what others may experience could be very different.

No matter how much you tell me you're happy with opiates and not addicted I will still not ever believe that they are a good first line treatment for RLS. They may help some, for others it could be a whole new hell.

[Bossy50 in reply to nathanwilde]

Text deleted as it is considered to be unhelpful.

Kaarina (volunteer)

[nightdancer in reply to nathanwilde]

And, we are clear that certain people just cannot use certain meds, in all categories. I have studied nursing and pharmacology back in the day, so I understand why some meds help some people, and others just do not work for many, and so on. I have been on many suicide watches, and the absolute worst of those are the "dopamine agonist withdrawal syndrome" DAWS. There are a lot if vicious withdrawals, but when not done correctly, but we have had many sessions over the years because of dopamine meds taken at doses that are too high and end up making your RLS worse, 90% of us. That is augmentation, and it is a huge problem. And, we all have our sides to our stories.

[nathanwilde in reply to nightdancer]

You are absolutely right nightdancer. I couldn't agree with what you said more.

On medical internet boards like this one though I try to keep in mind that there are far more people who will find this post on google, read through threads but never reply. These readers may be young, or new to RLS and may not understand everything as well as you do.

That's why I like to write every reply with the view that someone reading may not already know all of the information.

Please don't take it as an insult to your experience or your intelligence!

I wish you all the best in your battle!

[Hidden in reply to nightdancer]

That's how I see it. I don'tlike taking a lot of drugs but for me, I take Xanax prn for anxiety-have for years- and my dose has stayed the same all this time. I am allowed 0.5mg 2xday as needed I break my pills in half because less medication more frequently works best for me. Often, on days I can spend mostly in my own company, I don't need any Xanax. Crowds of people create anxiety for me plus too much noise, commotion, and chaos. So, I guess although I'm dependent them for anxiety relief my dosage has stayed low and stayed the same for years. My PCP has no problem with me being on so long. Also my pharmacist told me he doesn't feel like I have a problem. I don't play games, "lost prescriptions/attempts to refill early etc. I think it's important your caregivers trust you not to put them ir a 'sticky' prescribing/dispensing situation. Especially currently in the US where doctors are being monitered more closely than ever. I also keep my meds locked up when I;mout of my apt-along with chechbooks etc. Too many maintenance 'passkeys' etc. Not very trusting am I? irina1975

[nathanwilde in reply to Hidden]

Very wise of you. It seems as though you do a very good job of being strict with your medications and monitor your situation well not allowing your self to stray off.

I think this ability is so important for RLS sufferers as many of the treatments can be very easily abused if the user is not strict with themselves as you and I are.

[Hidden in reply to nathanwilde]

That is the key and might be a way to evaluate ourselves as to whether we are using all meds responsibly or sliding toward a possible addiction. I don't know the answer. I guess we all have to answer that question for ourselves. My sister had/has a problem with prescription meds ( I believe she still does but she says no.) She'll be 70 Monday. I have never been able to break thru her denial so now I leave her to make her own journey thru life and part of MY journey is to not enable her. She is in Florida and I live in Georgia now so having a state line between us makes this easier. Sad! irina1975

[nathanwilde in reply to Hidden]

I guess it's difficult to help someone who doesn't want help! You can do nothing more than you are!

Take care!

[Hidden in reply to nathanwilde]

You're right and thanks. I think you all know I seem to have sayings for everything. Well, here goes. On this subject. (Not my saying/read it somewhere "When the reader is ready the book will appear." irina1975

[Hidden in reply to nathanwilde]

Me again L do think people often are not ready to let go of the security they feel they get from their addictive substance/activity etc. Rather than not wanting help they don't yet see the long term problem. Maybe like the baby who isn't ready to give up his blanket and can't yet see he can't take it to college. (What an analogy-I need some sleep!) irina1975

[Leelee49]

Well I’m now on 75mg 4 times a day, and it’s not helping as of yet, the gabapentin helped, but I was on the max dose, 3600mg a day, I was losing hair, putting weight on and had heavy legs, but I slept really well and the rls was down to about 20%. But I couldn’t cope with the hair loss and heavy legs, so asked my gp if I could try pregabalin, I’m hoping they start to work soon, and also work for the pain, not just in my legs but lower back and arms aswell. If they don’t, who knows?

[nathanwilde in reply to Leelee49]

Are you taking the Pregabalin solely for RLS? If so, I would take all 75mg tablets together about 3 hours before bed time. It should then be a high enough dose to hopefully produce a result.

Maximum recommended dosage is 600/mg 3x a day, so you are on a low dose.

I would try 300mg 3 hours before bed (I found it takes 2 hours to kick in and then gets stronger for an hour afterwards before it levels off).

I hope it helps for you, just be really careful of the addiction, from my research the withdrawals can be very bad and take months to recover from.

[Leelee49 in reply to nathanwilde]

Yes, it’s solely for rls, I don’t get it in the day, it usually starts around 4pm so would I be wiser to take them all around 1ish do you think? Are withdrawals the same as gabapentin withdrawal? I stopped that slowly then started on pregab, withdrawals scare the hell out of me tbh as I suffer from panic attacks, and they are horrible, I seem to be getting everything at the mo, trying to be strong, but it’s hard.

[nathanwilde in reply to Leelee49]

I've found the pregabalin to last for a good 6-8 hours or so, so yeah I would try it at 2ish and it shouldd kick in by the time the onset starts.

300mg for me made me feel quite wobbly though so I would avoid driving your car until you're used to it.

I've never tried gabapentin I am afraid, I only know that pregabalin is a newer, stronger replacement. There are many horror stories online from people unable to get off the drug.

independent.co.uk/news/heal...

So I can't compare it for you I am afraid, but what I do know is that any withdrawal is a trigger for RLS. So not only do you have the withdrawals that a normal person would have to put up with but on top you also have amplified RLS. That's why I will not take any addiction risk to any drug. Rotation is the key, for me atleast.

I also want to add: You probably already know this, but just incase unfortunately I would not recommend self medicating with cannabis if you suffer from panic attacks. It has been known to cause them in prone people.

Keep updating me if you don't mind with your progress. I am hoping to set up a website and put everything I have learned over the years on there with the aim of building evidence and case studies to give to researchers in the hope that one day they may find a cure.

[Leelee49 in reply to nathanwilde]

Thankyou so much for your knowledge and help, I’ve thought about cannabis but always been too scared to try it, so won’t be going down that root. I don’t drive, so there won’t be any issues there. I’m hoping to keep to a low a dose as possible with the pregab, fingers crossed and will take them about 2pm, see if it helps. Will defo keep you updated, once again, Thankyou.

Lisa

[nathanwilde in reply to Leelee49]

You are very welcome Lisa and I really hope you find a way to manage this.

If you can, try to discuss some kind of rotation schedule with your doctor. Perhaps they may prescribe more than one medication and you can rotate them to avoid building up a tolerance and subsequent addiction or augmentation.

[Leelee49 in reply to nathanwilde]

I will mention it next time I go, I did find that diazepam helped me sleep at night, I had some left over from a while ago, so started to have 1, just before bed, great nights sleep 😊 but again, something else that can be addictive. Hopefully someone somewhereis creating a cure right now for this, and we will all be normal again haha. If only 😞. Off to try and sleep now, up at 4.30 for work 🙄. Thanks again, take care.

Lisa

[nathanwilde in reply to Leelee49]

Yeah Diazepam (Valium) and all benzodiazepines unfortunately are hugely addictive and the withdrawals are some of the worst possible. They definitely do help though. I've found 20mg valium to be the minimum effective dosage for me, but for obvious reasons I've always kept it to no more than once every 10 days.

Take care Lisa and I hope you get a good night's sleep!

[nightdancer in reply to Leelee49]

if your RLS bothers you in the evening or at night, that is a little early to be taking the whole dose at once. We all have to find out OWN ways too do it. And some people need to slow down a bit, since they only joined 2 days ago. ( not you, Lee Lee)

[Leelee49 in reply to nightdancer]

Well I’ve taken them now, so will see how it goes, so far so good, will keep you informed as to how I get on through the night.

[nathanwilde in reply to nightdancer]

The drug should be effective for 8 hours (taking her to 12pm) with another 6 hours of reduced effectiveness afterwards.

It might be enough for her to fall asleep and get a good night's rest. If not I am sure she will know best how to adjust the times

Leelee, try what you're comfortable with and if you wouldn't mind - let us all know how it goes so that we are learning.

Best of luck

[nightdancer]

Well, good luck connecting the dots, nathanwilde. SOME day there will be a person who does, we always must remain optimistic, no natter how bad some days get. One little comment, first. We may find things that work better than others for US. We all know no one thing works for all of us, it would be too easy that way. But, we continue on until we can actually use the word "cure" truthfully, as in something has completely gotten rid of the offensive RLS, never ever to return. We area long way from that, but I do have new research paper that just came out, co-written by 5 RLS experts that I know, have heard speak, and have spoken in person many times. We have been waiting for this paper for over 18 months, and the studies were done over 3 or more years, it is on "the Appropriate Use of Opiates in the Treatment of RLS" This is the single best thing to come out on RLS, sine we ARE fighting the "war on drugs" in the wrong way, from the DEA on down. ( If you are in the USA) Besides managing RLS groups, I am a chronic pain activist, and also an RLS activist so that it is ACCEPTABLE to treat RLS with opiates. For someone like me who has tried it all over the last 30 years, I have narrowed my treatment right down- "Slow release morphine, short acting Tramadol Clonazepam and a sleep med, is the ONLY combination of meds that help my RLS 99% of the time. Have been on the same doses for over 15 years, rotate meds, as suggested in the original post and so on. I have tried EVERY med on and off the list, every elimination diet, not allergic to gluten (one should not got gluten free if you do not have a sensitivity to it. So, we all have to find our own way, and that means read read read! And stay off the sites that are selling a product. They have an agenda.

[nathanwilde in reply to nightdancer]

Thanks nightdancer.

It can't hurt to try. It helps that my career is aligned in a small way. If we can create awareness alone then we have helped future RLS sufferers.

Sorry to hear you've gone through and going through so much trouble with this. You have my every sympathy.

I'm glad you seem to have found a way to manage it that works for you.

All the best.

Nathan.

[Bossy50 in reply to nightdancer]

Indeed..agree with everything you've written there my Lady lol

[Hidden in reply to nightdancer]

Im with you on the agendas I usually stay away from sites that want to 'sell' info-especially medical-to people that need it. Give it away freely to people who need it and your KARMA will be much better, irina1975

[Bossy50]

I think maybe you need to exercise a little caution...I'm sure you mean well but there a lot of people on here who've been battling RLS for years too. Done all the same type of research you've done, tried all the drugs and most importantly use the wealth of Expert Opinion avail thru the RLS.org site and help each other swapping stories of what's worked for us. It's important to remember that we're all different, clearly you have had addiction issues and need to take extra care of you. People who are new to this site and in the early stages of learning to cope with this awful illness may mistake your kind advice on meds as expert advice..which of course. I'm sure, is not how you wish to be perceived. It's just your experience of your reactions to medications. Opiates work very well for many and it's essential there's no scaremongering about them here. Thank you

[nathanwilde in reply to Bossy50]

Text deleted - unhelpful comments. Kaarina (volunteer)

Thank you, you're correct I do only mean well, and that's why I steadfastly will not back down on this. This is a thread, written by me, offering help to others as my opinions of my experiences only.

"clearly you have had addiction issues and need to take extra care of you."

Unfair presumption. Actually I only ever been addicted to cigarettes and I quit 9 years ago and I am still clean. It is the harsh withdrawals which amplified RLS which has always saved me from addiction with other drugs. I am super, super careful.

I don't and won't ever recommend opiate drugs as a first line treatment. I just won't ever agree with you. I am sorry. There are better, less harmful options which should be explored first in every case in my opinion.

I do not accept that opiates are the best solution. They're a square peg in a round hole.

If they work for others I am very grateful for that as those people have found some relief, others may find themselves with a bigger problem than they started with.

I also suspect that some people will defend their opiate use because they are already addicted and are frightened of their supply being cut. I would hope that these people may think of others before themselves should that be the case.

Like I've said, my thread, with my opinions, my experiences written with the best intentions. I hope someone finds some relief from them as I have.

Thanks.

[Bossy50 in reply to nathanwilde]

Text deleted - unhelpful comments. Kaarina (volunteer)

[Hidden in reply to nathanwilde]

You suspect some people will defend their opiate use because they are already addicted.!!! That is an insult to those on here who have tried everything else and opiates are their last resort. !

[nathanwilde in reply to Hidden]

No absolutely not. It is not aimed at the people you have described at all. In their case I have every sympathy - unless they are to start recommending the treatment to others as a first line treatment for RLS. I don't agree with that idea at all and that's my opinion.

I have repeatedly said that opiates have their place as a treatment for RLS. I just do not believe it should be the first option for a doctor prescribing a new patient.

I have said and will say again - those who have gotten sustained effective use from opiates I am very happy for - genuinely!!

Unfortunately it is my opinion that it wasn't particularly effective for me, and they have a very very long history of negative side effects for a large number of users. I have found other treatments to be more useful and safer and I wish to be able to say that without people jumping at me for it.

[LotteM in reply to nathanwilde]

Nathan, on tbis forum threads are not “owned” by the person who started them.

And it is not appreciated - to put it politely - when you lash out unfoundedly at people who do not agree with your opinion.

I - and I think many people with me - do value your experiences and even your opinion. For what they are; your experience and your opinion.

[nathanwilde in reply to LotteM]

Text deleted - unhelpful comment -Kaarina (volunteer)

Thanks though, and I wish you the very best with your battle!

[Hidden in reply to nathanwilde]

Why not just 'live and let live' and allow others to have the beliefs they have found most comfortable . We don't have to change anyone's mind. I'm reminded of what most have heard years ago; 'more wars are fought over religion than anything else...." (I'm paraphrasing). Over and out! irina1975

[nathanwilde in reply to Hidden]

That's also what angered me in this thread.

Text deleted - unhelpful comment -Kaarina - volunteer. they were not allowing me my belief that opiates shouldn't be the first line treatment from doctors (as they were for me). Text deleted - Kaarina - volunteer

I can't lie about my experiences though, that's what this thread is about - what I experienced and have found to help me. Some people seem to think it's ok to tell me my experience is wrong and then expect me to change my mind!

[Hidden in reply to Bossy50]

What I see here in the US is that 'addictive/difficult withdrawal drugs' are often socially acceptable when they're making tons of legal money for Big Pharma, and are just 'terribly addictive' drugs to stay away from when the profit margin is low. Just a thought! irina1975

[jan_ET]

wow and god bless you- it was 4.45am in Australia - i was awake andmy phone pinged - the birds are all waking up and i received your message - what a wonderful way to start the day!!! so im in my garden area- my peace place reading your text- just wanted to say thank you so much - now gotta go back to reading - the kindness i have found on this site has blown me away - bye for now jan

[nathanwilde in reply to jan_ET]

Hi Jan!

I hope you weren't kept up to that time because of your RLS, those nights are so frustrating! Luckily I manage to sleep through most nights now.

I hope you find a way to win this battle! You're not alone.

Nathan.

[LotteM]

Nathan, are you aware that what you describe about opiates is EQUALLY true, maybe even more true, for dopamine agonists? And DAs are, or rather have been, the first line treatment for RLS for many years. And very many people on this forum have “paid” for that.

I think we should always use caution when taking medicines, including supposedly harmless ones like paracetamol, with ‘natural’ remedies like kratom and cannabis, and even with freely available supplements, such as magnesium and vitamins. All may be harmful, some more than others, and some for more people than others.

[nathanwilde in reply to LotteM]

Definitely.

I have a prescription for Ropinirole but as I am relatively young at 30, I am worried about augmentation, especially since I appear to suffer quite severely already and have done since I can remember.

I have the drugs here, but I am only willing to try them as a last resort. So far I have found a way to manage it without the harsh drugs, or atleast limiting the harsh drugs to a point where I hope I am safe.

The doctors I have seen, honestly I have left the appointments absolutely gutted. I left there with the feeling that the doctors thought I was crazy and it made me feel hopeless.

[Hidden]

Hi Nathanwilde. This post had lots of good ideas -all in one place. I bookmarked it. Of all the suggestions the one that seems hardest for me is reducing stress. At 73 I just cannot seem to get a handle on this one.If anyone finds a way to really reduce life's daily little stresses contact me right away and I will pay you LOTS ofmoney (as soon as I win the megamillions lottery.) (LOL But not really.) It is a plethora of ideas to choose from,though. Thank you Nathan. irina1975

[nathanwilde in reply to Hidden]

Hi Irina!

Thanks for the kind words! If my experiences can help just one person it will have been worth all the trouble some people have given me for writing it!

As for stress - I understand! Sometimes it is unmanageable. When I feeling very stressed, if I manage to keep my cool enough to think clearly I try to distract myself.

If I can I try to force myself to do something else, every time the stressful reminders pop in my head I try to immediately turn my thoughts to something else. Sometimes I will even just imagine a beach or a time when I laughed with my daughter or friends.

Just shouting "I AM AWESOME" has been proven by an american study to reduce stress hormones in the body immediately and release endorphins!

L-theanine has also had many many studies on it's stress reduction capabilities. It's inexpensive, natural and safe. I can't say it is a miracle cure for me, but everyone's different!

ncbi.nlm.nih.gov/pubmed/169...

It doesn't help though that stress seems to trigger RLS (atleast in me) the RLS makes distracting yourself more difficult because it's like a physical alarm clock reminding you of the cause of the stress! Very frustrating.

Best of luck Irina, I wish you the very best.

[Hidden in reply to nathanwilde]

Good advice and info. I also try distracting my brain and mentally going to my'happy place' which for me is usually Scotland. Also I listen to music-especially classical-which can calm me down fast. So when I'm alone I can do these things. It's when I'm around other people for too long and can't ge to my down time it's harder. It seems that a lot of people here in the US have their tv's on all the time even when not really watching-like background noise. My family does this and drives me crazy. Fortunately since I moved into senior living a year ago and now live alone I can keep my environment as quiet as I like. So I do have less anxious episodes. I also have been reading about the benefits of threanine(sp?). And I AM awesome!! ( in my opinion.) Good to know there is a study to reinforce this. If we don't blow our own horns who will? By the way, I did get talked into going to a new sports bar recently by my friend Jacob to watch a Georgia football game on the big tv's, The dinner was good but with everybody screaming over touchdowns and such I decided 'Never again'. Can you tell I'm not a football fan? But I will be glued to the winter olympics coming up-esp figure skating! Take care. irina1975 (Burma)

[involuntarydancer]

Thank you for an extremely comprehensive and helpful post containing lots of food for thought and some very out-of-the-box thinking. I have posted my reservations about your observations on opioids and alpha2delta ligands but there is obviously loads more in your post and I want to emphasize how much I appreciate you taking the time to document your thinking so fully. It is so helpful to read of the experiences of others - and you have tried such a wide range of things. I also really like the way you estimate the extent to which individual treatments helped as a percentage figure.

Many thanks, Nathan

[nathanwilde in reply to involuntarydancer]

Thank you IVD

I really appreciate you taking the time to write this, it's made my day a little bit. I hadn't visited the forum for a while as I didn't feel I was helping.

Much appreciated.d

[Ureshi17]

Hi Nathan,

Thank you for your detailed information about what works for you.

I’m intrigued about the “noopept”. How much did you take and when?

I’m using Kratom exclusively, but I’m going to try it. Did you find it slightly more effective than Kratom at reducing RLS?

Thank you so much!

[nathanwilde in reply to Ureshi17]

Hey!

You are most welcome!

I'm also intrigued about Noopept, from my research it does have an effect on catecholamines, which may explain it's interaction with RLS.

I took 10mg daily, I found it to be quite useful for mental clarity and although there are many short term studies on it's safety, there are few long term studies, so I decided not to use this product for the long term.

I would say it was atleast as effective as Kratom, probably more effective than any opiates are for me. I took 60mg DHC the other day as I was suffering a bit and I felt it made my RLS worse.

But this thread is evidence that things work differently for different people so it's very hard to say.

I would say Noopept is worth the research for you, though I couldn't find much linking it with RLS - I just noticed it as a side effect!

Best of luck to you.

Nathan.

[Hidden]

Nathan. Thank you. I copied the list. Very much appreciated. xxx irina1975 2/14/18

[Hidden]

Nathan. I just wrote a response to one of your posts and accidentally sent it to hishoney. I don't have the computer know-how to resend to her. If you don't mind, check her posts (hishoney) to see if you can find it. In it i talk about contrast dye elevating BUN lab tests. Thank you. Sorry to be so computer ignorant. Thanks again. irina1975 correction. in third line, first word should read 'you' not her.

[Jumpylegs66]

What a fantastic post...thankyou so much Nathanwide for all the detailed info. As you clearly state, each individual sufferer has to find their own way of coping with RLS. You have offered many suggestions all based on your personal experience. Hope you dont mind but I have taken screen shots of your post so I can begin the search. I have been on Ropinerole for years and my doctor is not interested when I question if this is safe. Thank goodness we sufferers can share our experiences here. Thank you again.

Jumpylegs66

[nathanwilde in reply to Jumpylegs66]

You're most welcome Jumpylegs. Hope you find something that works for you

[libraryannie]

Thank you for sharing your experiences over decades of searching for the magic bullet that would stop the torture of RLS. I appreciate your insights as I am looking for alternatives as I wean myself off of 20 years of dependence on Pramipexole. Yours is a long list of potential bullets including a few I had never heard of before. I have just received some Low Dose Naltrexone which I plan to try after treating SIBO. I was interested and mildly disappointed to find it missing from your extensive research because I liked your helpful personal analysises of each thing you tried. I am curious to know if you have studied it and, for some reason, have rejected a trial?

[Happywalker]

Hi Nathan Wilde. Your post is very interesting. Firstly is RLS restless leg syndrome? You also seem to have itchy skin. I am not sure if I have Restless Leg syndrome or not. I have had the need to move my legs all the time and especially in bed since I was a teenager and I am now 72. It hasn't really bothered me but it does bother my partner. However I have developed pruritus in my scalp and on patches of my body. It doesn't fit with any of the normal itchy skin disorders and my GP doesn't know what is causing it. I can wake up in the night with my scalp and every itchy patch screaming to be scratched. It is very hard to ignore it and tea tree oil or TCP helps reduce the itch.

I was interested in your comment about an iron deficiency as I am beginning to wonder whether my problems are all linked with Hashimotos and Irritable Bowel syndrome. I suffer from both. I shall have to give up my morning mug of coffee.😥

[Mipilimi]

thank you so much🙏🙏🙏