Low Dose Naltrexone...A Cure For RLS?

I have, or I should say, had, extremely painful primary RLS and used to be on pregabalin and morphine...which I have to say worked like a dream come true. I tried Ropinerole for a while but it made me feel absolutely awful. However, the weight gain with Pregabalin was a problem and I didn't want to be on morphine for the rest of my life.

I started researching a drug called Naltrexone because in very low doses this can stop RLS and all sorts of other health problems (I also had polymyalgia) by causing your your brain to produce 300% more endorphins straight after the drug has finished working (after 4 hours).

These endorphins are your body's own natural pain killers and also healers. It is now 3 months since I started using an ultra low dose (in micrograms) to wean myself off morphine and I'm currently 3 weeks without pregabalin (which is another nasty drug to withdraw from).

Because I'm no longer on opiates I am able to take 4.5mg of low dose naltrexone every day. This drug is almost without side effects , other than vivid dreams, and initially it upset my stomach. Since I've had the sublingual drops I don't have the stomach problems.

I can report that although the RLS is not yet gone completely, it is far better than I could ever imagined. Before, when I thought of the prospect of having to come off the morphine and pregabalin, I would be in total and utter despair, remembering how bleak my life was when my RLS was at it's most painful. Now the only tablets I take for pain are paracetamol and ibuprofen.

Because initially I wasn't able to get LDN from the UK supplier in Glasgow (Dickson's) they wouldn't supply it because I was on morphine. I watched a video on Youtube where the late Dr.Bahari talks about how LDN came about. On the bottom of that screen was a website that sold Naltrexone that you could then dissolve with medical distilled water and take in very very small amounts to help you wean off opiates....there is even an absolutely brilliant Facebook group called NOPE which have a mountain of information on how to titrate these doses and all sort of other useful information, which, their help and support and of course ULDN, I am where I am today....and full of hope for the future.

LDN can help all sorts of diseases and RLS it seems is one of them. I'm not completely out of the woods yet, but from where I was five years ago (desperate and suicidal) I'm in a totally different place today.

PLEASE look at these videos and start doing your research. You too can get relief from this terrible blight on your life like I did....

I inherited RLS from my father. He died just last month but right up 'till the end, his legs were hurting and he would rub them like I used to do...I wish he could have known the help this drug could have given him.

ldnresearchtrust.org/ldn_fa...

UPDATE:

It is now 4 months since I started taking LDN. I now consider myself free of RLS and Polymyalgia. I have no pain or need to move after the sun goes down at all.

I am truly filled with joy beyond measure.

I wish you all well

Imogen x

16 Replies

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  • Will certainly follow that up when I get into wifi.

  • I would say we should use the word "cure" carefully, since there is no proven cure for RLS at all, just theories and lots of hope. I certainly will watch these after I check msgs and wake up a bit to see what they are saying. I know many people who have tried LDN with varying degrees of success of lack there of. We are all different when it comes to meds, and I do not think this actually mentions RLS, if it is the video I saw before.

  • Thanks for sharing that info. I have a friend with crowns disease who uses LDN dispensed by private prescription from Glasgow but it is expensive and not everyone would be able to afford the £200 a month cost.

    Just out of interest, is your RLS mainly of the pain variety or the unbearable creepy crawly desperate need to move variety? Maybe LDN would not be as effective for the non pain variety of RLS.

  • Crohn's disease, not Crowns ( bloody predictively text!)

  • Hi Jools,

    LDN is actually only £20 per month I could show you my bill if you wanted? If I put £20 into perspective, that isn't even 10 cups of Costa coffee so not expensive at all. The 3 month repeat prescription charge is £25 so that needs to be factored in too after working it out, it seems to cost no more than £1 a day which is ridiculous really when you think of the suffering we all go through. However, to be without RLS, even at the level I was at 5 years ago, it's worth it for me to pay.

    If you go on to the LDN Research Trust site and look at the diseases LDN can treat you will see among very many other conditions it can treat RLS. Here is the link: ldnresearchtrust.org/condit...

    Perhaps I shouldn't have written "Cure" because I have no idea if I stopped taking LDN then would it come back but I am willing to stay on this drug for the rest of my life.

    Although I have only been on LDN for just a month at the full strength, the improvement in my pain and the absolute need to move to get away from my legs has been remarkable....now it does say that it can take months to work fully, but given the agony I used to be in, both mentally and physically with RLS, I am so amazed that I felt I really needed to share this.

    It has very few minor side effects as it's at such a very low dose and given that the drugs that are generally prescribed for RLS can have a whole host of really distressing side effects, including augmentation, well I just needed to tell people...

    When I next see Prof. Ray Chaudhuri at Kings College Hospital in London I will be telling him that I'm taking LDN and how I'm getting on.

    All I can say is, that now I'm no longer taking Pregabalin and high doses of morphine to take away the dreadful and painful feelings in my legs that would keep me moving all night.

    I'm nothing special, but this drug, in this very small dose has started to work and I'm filled with joy.

    I reason that given it helps SO many conditions why shouldn't people get to know about it? I also have Polymyalgia and it is helping that too.

    Feel free to disregard anything or everything that I have written, I have nothing invested in trying to get this drug more widely known....however, just imagine if it could help every poor soul who spends their night times pacing the floor....or even is wheelchair bound because of MS or some other dreadful illness? I see that it can be incredibly helpful with those suffering from cancer...I just wish I had known earlier that my late father had pancreatic cancer I would have got him on it too, but there y'go, sometimes you find out about these things too late. See link: vimeo.com/168562089

    Just because there is no money to be made by large pharmaceutical companies doesn't make is any less effective in helping your body to heal itself does it?

    I have to admit, that before I found out about LDN, the thought of coming off Morphine and Pregabalin filled me with absolute terror (and I use that word in the truest sense). I wouldn't even consider going through weeks of terrible pain before I could even start on a different medication. But then I read an article by an American doctor called Ginerva Liptan. She was using very very small doses of LDN with her patients who suffered from fibromyalgia and who were on opiates and found that not only could the two drugs coexist successfully but the added tiny amount of LDN actually improved the efficacy of the opiate thus allowing for the opiate to be reduced and the tiny dose of LDN to be increased. This is how I managed to get off the morphine.

    The choice is yours to do with what you may and anyone else who reads this.

    At the very least, I would have thought it might interest those in the USA who spend enormous amounts on prescription drugs (unlike us in the UK) to find something that won't break the bank?

    I wish you all well.

  • Thank you so much for that detailed and really helpful response. Funny you describe MS as a dreadful illness- I have MS as well as RLS and although it has caused me disability and several other unpleasant things, I'd rather have MS than RLS any day!!

    The LDN cost is a very welcome surprise and I would definitely consider it. However, like you, I am on oxycontin and pregabalin. Would I get a prescription for LDN while I'm still taking these drugs or would I need to come off them first? I don't think I could cope with the horrible sensations again all day ( and the RLS actually caused by withdrawing from both drugs).

    I saw Prof Ray Choudhuris team in March and didn't learn anything I'd already been told on this site. It'll be interesting to hear what they say.

    How did you reduce the pregabalin and morphine and what dose of those drugs are you on now? Also what dose of LDN?

    I'm really, really interested in trying LDN because like you, I live in terror that the pregabalin and OxyContin will become ineffective. They control my RLS during the day and most of the night but I still get RLS every night for at least 1 hr.

    I think it's brilliant to know about another option that seems to be working so well.

    Take care

    Jools

  • Hi Flower-girl,

    I’m so encouraged to hear of your success taking LDN.

    There is a brilliant gastroenterologist in the US who is helping quite a few people with RLS using LDN.

    Dr. Leonard Weinstock.

    You can find some of his interviews here and a Podcast with the transcript below.

    ldnscience.org/resources/in...

    thehealthygut.co/leonard/

    He doesn’t suggest trying it though unless your serum ferritin levels are at least at 75.

    Research has found that people with RLS have lower levels of endorphins in their brain.

    Dr. Weinstock has also found a connection between SIBO and RLS in his patients ( overgrowth of bad bacteria in your small intestine).

    I have a prescription filled but I’m currently taking Kratom exclusively and as it acts on Opioid receptors, I am wondering how I slowly can come off the Kratom and introduce the LDN?

    Do you take it in the morning or before bed?

    I’m so hopeful it will work too!

    Thank you so much again for sharing.

  • Flower-girl. I've been researching and more or less treating myself - and like you I have the painful type RLS and fibromyalgia. I have been free of RLS for 3 weeks but not without the use of hydrocodone and still on Pramipexole but cutting the doses down. One at a time. Once I'm off Pramipexole My next step will be to try the LDN. I need to research it some more first. I live in California and will see Dr Mark Buchfuhrer in March. I am interested to see his opinion too of LDN Thank you for sharing this great information I've learned so much from this support group

  • I can't tell you how helpful this is to me...I'm currently on 120-180 mg's of Dihydrocodeine and although it works well for my RLS, my tolerance is increasing. I sleep far too heavily and for too long now but any lower dose is not effective for the RLS. Like you I'm terrified of going back to the horror I know will happen coming off the DHC but I don't want to continue as I am. I'm pretty up on meds as I work in Mental Health and all the info you've supplied here makes so much sense to me. I'm going to go to the sites you've recommended and take it from there...but I think this is something I'll definitely be trying...thank you so much.

  • Hi All,

    I too am taking LDN for my fibromyalgia and it has changed my world!!! I was having so much muscle pain that I almost couldn't get out of a chair. I pay $35 a month here in the US. I haven't noticed any change in my RLS though. Also my RA DR. said not to take my Ultram with it. I am getting along quite well with just an Advil now and then. I also take Gabapentin for my RLS. It's great to have this forum to see that I'm not alone!!!

  • I am at a point where I am down to 0.088 prami every second day. I am taking 300mg Magnesium Citrate each day and 20mg Gentle Iron every second day and warm Epsom Salt baths.

    I will make an appointment with my Dr to discuss LDN. I hope it won't be a waste of time! I will need a serum ferritin test and possibly extra iron.

    I was going to ask for help anyway with coming off the last small prami doses because I am climbing the walls already. LDN sounds better to me than opioids.

  • Very informative thanks. How does it work with the move from morphine to LDN? I'm taking 40 mg of Oxycodone twice a day and 100 mg of tramadol, (not to mention a 2 mg Neupro patch) and still have bad nights and an almost constant underlying unease, (I'd say restlessness but not quite), and would love to get away from the concoction.

    I have pain issues due to back and knee damage along with neuropathic pain in an ankle along with the pain from RLS hence the opiates. I also suffer with ME and since it says it works for Fibro and CFS I assume ME would come under the same umbrella as it often does?

    Delighted you are getting relief. I hope its not long before you get much more.

  • Good morning Raffs, To enable me to reduce my opiates I joined this group on Facebook:NOPE Non-Opiate Pain-relief Experiences. ULDN / Naltrexone & other options

    In the "Files" section it has an inordinate amount of information that you can access in order to reduce opiate use AND take very very small doses of LDN. The two administrators of this Facebook page, Brian and Michael have a wealth of knowledge and will help anyone on their journey to non opiate use using ULDN.

    As an update, I now consider myself free of RLS and Polymyalgia. No pain or need to move after the sun goes down at all....I am filled with joy.

    Imogen

  • To Flower Girl. In order to get off Pramipexole I used hydrocodone. Then added Super B complex, turmeric magnesium and calcium once in am and once in pm. This has relieved me of RLS symptoms but now I need to get completely off Pramipexole and the hydrocodone. I think I am where y were with the morphine and Pregabalin. Question - were you still on morphine and pregabalin when y started the LDN? As I think there is interaction between those drugs - I'm going to try LDN I just want to know how low is dose and when I rid myself of the drugs I'm on before or after I start taking LDN. Thank y for sharing your information.

  • I was on pregabalin and morphine when I started taking micro doses of LDN. I had purchased LDN tablets from the website noted at the bottom of the interview with Dr.Bahari on YouTube. I also joined a FaceBook group called NOPE. On that FaceBook group there are tonnes of extremely helpful files of information about diluting the LDN and also titrating the dose so that you can take it in micro doses. The administrators, Michael and Brian are incredibly supportive and have a wealth of useful information which they share.

    It took me, I suppose about a month of taking increasing micro doses to finally reduce and then cut out altogether, the morphine and then I could take LDN in increasing doses from half a milligram up to a maximum of 4.5mgs. I can tell you it has changed my life completely. Cutting out the pregabalin actually gave me more problems than the did the morphine....cold chills, anxiety, shivering then copious sweating to name but a few, but now I no longer take anything like that at all. I now take every day: R-Lipoic Acid, Vitamin D, and Iron Sulphate plus obviously the LDN which I take in the morning as it suits me better.

    It didn't happen overnight but it did happen within 4 months and even though it didn't happen overnight, the reduction in the horrible, painful feelings that would build up in my legs, was reduced to the point that I could control it with paracetamol ....something I never imagined happening! Now, I don't have it at all....nothing.....no pain or creepy feelings. I am truly happy.

    I wish that for you too Crazylegs

    x

  • Hi I am 72 and have had restless legs for about 30 years.

    Initially using clonazepam at night.... for many years

    The past 5 years, starting with o.25 pramipexole at night.... increasing to 2x 0.25 pramipexole....

    Increa#ing to adding a slow release o.75 pramipexole in the afternoon to deal with augmenting issues .... then

    Increasing to adding 2 x pregabalin .75 .

    I know when I see my doctor he will advise to increase the medication again.... it seems a continuous spiral

    I feel as though I would like to try a different way... but feel quite nervous about this....

    what actually is LDN .? And is this available in Australia.?

    If so..., how should I make the changeover ?

    Frea

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