With my long battle with rls I had my appointment with neurologist last week and she indicated that there was no more she could do for me! I have been on a regime of taking two 75 mg pre night and 60 mg of codeine each night. I can’t take a larger dosage of Pregabalin because the side effects of heart palpitations and because I’m over 80 a stronger doses of an opioid is not recommended
I spoke to my gp and she said I should reduce my dosage of codeine because of the possibility of addiction so I am gradually doing so
The problem is my rls is causing insomnia and I feel as though I’ve reached the end of the road! I spend my nights pacing op and down the bedroom hoping that I could get some sleep because I’m desperate
Any advice?
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What!!?! You are over 80 and she is concerned about addiction? Where does she come from? The moon?
I am so very sorry to read this and I am so very angry on your behalf. Why doesn't she inform herself first before throwing the ill-based if not in-based addiction argument at you.
Is there someone who can elp you? And can inform herself and get angry on your behalf and still address this neurologist politely but very very firmly? A smart child, grandchild maybe or good friend? I hope you can turn this around.
I so wish we could do more. I hope that meanwhile you can manage, but from the title of your post I assume you are nearing the end of your tether. Codeine is a very weak opioid. Small doses f stronger opioids like oxycodone, methadone and buprenorphine are indicated for rls. Or can't you take them for some reason? And did you consider kratom? I can't check your previous posts and replies right now, as I am typing on the app on my phone. It has fewer options compared to tue web version.
Please stay with us and keep asking for good and considerate care.
Many thanks LotteMI have been told by my gp to reduce my codeine intake from 60 mg per night to 45 mg for one month and then contact her again what this will achieve I don’t know
I'm so sorry, all I can say is that between them, the neurologist and the GP are not helping you. There are other things they can do.
If you reduce the dose of codeine and do nothing else then your RLS can only get worse. That's not helpful.
Your GP may be confused with the new guidance for the management of chronic pain which suggests that opioids shouldn't be used for chronic pain and if somebody is lraeady taking an opioid for pain they should discuss reducing it. Even so, they can't force anybody to stop taking the opiod.
However, that';s chronic pain and the same does nbot apply to RLS. Opioids are still recommended for RLS.
I can see that there is a risk of becoming addicted to codeine, but firstly that's more likely because it's only a low potency opioid and hence needs quite high dose.
Taking a low dose of a high potency opioid may be less risk. Oxycodone is licensed for RLS in the UK. Methadone or buprenorphine can also be used.
Secondly, opioids only really become "addictive" if you misuse them. If you only take the prescribed dose and never exceed it then you may become "dependent" on it, but that's not the same. Addiction is really where you keep increasing the dose and get cravings.
You are probably already dependent on the codeine but at 80 plus, is that so bad?
In any event, which is the greater risk? The risk of possible harmful effects of opioids or the risk of the consequences of chronic sleep deprivation, anxiety and depression?
I agree wholeheartedly. I have been taking tramadol for my RLS over 20 years, and while I am probably "dependent" on it, I am certainly not addicted. I take it because it works! It enabled me to finish a career and retire at 62. My 39 year marriage is intact, my children are grown, and I can travel long distances to visit my grandchildren, all because of tramadol. I am grateful to the doctor, who from the very beginning, worked with me to find a medication that worked for me, and allowed me to live a semi-normal life. Without tramadol, I may have ended my life many years ago, because the pain of WED/RLS became unbearable.
I'm glad to hear you have done so well despite RLS.
Hi Hooch, I'll throw my two cents into the ring here. I'm sure you've seen my annoying recommendation (at this point) to take two (and in your case three) capsules of ferrous bis-glycinate (which is a highly bio-available form of iron) one hour before bed on an empty stomach. Earlier to bed the better (at least before midnight). I actually open the capsules up, pour the contents into water and then add some powdered vitamin c (orange juice would do as well) or a flavonoid called Quercetin. I don't know that this step is necessary, but I do it because it's become a kind of ritual. It rids me of RLS for the night so I must repeat every night. This method works for some, but not others. If it doesn't work this way for you I would still take a capsule every other day to get your body stores of iron up - provided you do not have iron overload in your body already.
Next I would find the best Chiropractor you can and if money is not a problem a great personal trainer as well. As we age (even non-RLS people) our dopamine receptors age and our symptoms of RLS increase. The good news is it sounds like we can reverse this process somewhat by severe calorie restriction and anaerobic exercise (not aerobic, has to be anaerobic). I have a brilliant Chiropractor who is also a holistic nutritionist and I used to have a personal trainer - neither for RLS, but the point is they both have to be great, understanding and incredibly knowledgeable in things like intermittent fasting and anaerobic exercise. Your goal, should you choose to accept it, is to heal yourself and then become a coach for all of us. That is what you should dream of as you lay down at night - becoming a combination of a zen buddhist master and marathon sprinter.
Here's a paragraph from the best article I could find (in five minutes) that talks about up-regulating our dopamine receptors. All of us on here need up-regulating so you are in good company :). Here's the low down:
"The benefits of anerobic exercise extend not only to upgregulation of insulin receptors, but also to maintaining high levels of dopamine “reward” receptors. A study of exercised rats by McRae et al at University of Texas showed that regular exercise has a protective effect on D2 dopamine receptors, while keeping levels of dopamine (DA) and dopamine metabolite (DOPAC) low. Unexercised rats saw both a decrease in D2 receptor density and an increase in circulating dopamine.
Step 2: Calorie restriction and intermittent fasting. Another brain scan study at Brookhaven National Laboratory showed that restricted eating led to higher numbers of dopamine receptors in obese rats:
The scientists found that genetically obese rats had lower levels of dopamine D2 receptors than lean rats. They also demonstrated that restricting food intake can significantly increase the number of D2 receptors, partially attenuating a normal decline associated with aging.
This research corroborates brain-imaging studies conducted at Brookhaven that found decreased levels of dopamine D2 receptors in obese people compared with normal-weight people,” said Brookhaven neuroscientist Panayotis (Peter) Thanos, lead author of the current study, which will be published online in the journal Synapse on Thursday, October 25, 2007.
One of the essential points to understand here is that if calorie restriction and intermittent fasting are effective, it is not for the reason that most people think explains this (that you are creating a calorie deficit). Rather, intense exercise and fasting work because they resensitize and grow your insulin and dopamine receptors in a way that allows you to get enough energy and pleasure from eating less food. This means that not only are the receptors upregulated, but you also get the energy and pleasure when you need it. So restricting calories is not good enough. You must eat foods that maximize insulin senstivity (e.g. containing adequate essential fatty acids, protein, magnesium, etc.) and foods which give you enough pleasure so as to satisfy your “pleasure budget”, but not so much as to downregulate your dopamine receptors. My experience is that intermittent fasting, using a varied diet, is the best way to do this. One reason that pure “starvation diets” like that used in the Minnesota Starvation Experiment may have failed is that the diet failed to supply adequate nutrients that to support receptor function for cellular energy and pleasure. (The 1560 calorie/day regimen consisted only of potatoes, rutabagas, turnips, bread and macaroni — so go figure!)
A particularly effective protocol for improving insulin sensitivity and upregulating glucose transporter receptors is called “fasted workouts”: a combination of intense exercise and intermittent fasting, in which eating is postponed until after one works out. One of the foremost practitioners of this approach is Martin Berkhan, who I’ve referenced on the Fitness page of this blog, and whose Leangains blog I’ve listed under the Diet links. Martin summarizes the research by DeBock et al. and Cluberton et al. that documents the physiological benefits of fasted workouts, including enhanced insulin sensitivity based upon a six-week study with four 60-90 minute workouts per week. The study controlled for dietary intake, and compared results of those who fasted (F) with the control group (C) that ate prior to working out. Among other variables, the study compared changes in the levels of the GLUT4 transporter, a type of insulin receptor in the muscles, between the F and C groups"
GO!!!!
Edit Here - DO NOT EAT AFTER SUNSET and get most of your calories earlier in the day. Your gut AND your brain will thank you.
Thank you for your well informed and referenced post. You always have a robust and original approach which inspires me to try harder on the diet and exercise front, not forgetting the intake of ferrous bis-glycinate. I have tried time restricted eating for some years now (only coffee for breakfast) and it’s made a big difference to my general health. I try to follow Dr Sarah Myhill’s dietary protocols. This dietary strategy which I need to firm up combined recently with yin yoga leg stretches and some red light therapy has considerably improved my rls symptoms and has given me hope that the whole thing might be controlled, possibly cured, without heavy medication. Please keep adding your two cents worth regularly they are worth a lot more!
Well wait a second, let's refine, or at least detail, everything that you are doing so that others, including myself, can learn and get better. I'm glad that you tried the ferrous bis-glycinate. Do you take it an hour before bed on an empty stomach, hmmm? Does it provide complete relief, hmmm? In terms of your diet time restriction I have been reading how our gut has a circadian rhythm just like our brains and that it's best to get most if not all of our calories between sun-up and sun-down....probably like our ancient, cave-dwelling ancestors did. I recently posted an article showing how eating a larger breakfast, or if you're like me, lunch (never hungry in the morning) is better for your dopamine system than eating a larger dinner, so we with RLS should really heed this, don't you think? Or at least people whose RLS is poorly controlled. It doesn't mean every single night of your life you have to eat lightly. Yoga is great, but I need to research Yin Yoga. I have a tape called Yoga for Dummies :), that I got as a mother's day present and that's about the extent of my Yoga these days. I think that rather than walking around the house at night people should try doing a few balancing poses. That should cause a ton of dopamine to be released...from another part of the brain where our dopamine receptors are not small and few like they are in the substania nigra. Whenever we stand and walk the brain releases dopamine to balance us as we stand and coordinate movement as we walk. That's why we get relief from RLS when we stand and walk. It doesn't matter where the dopamine comes from it will relieve the RLS. I noticed once or twice that leaning doesn't completely rid me of RLS. I guess my brain didn't sense much imbalance and didn't release much dopamine. Alas, not sure how long the dopamine rush from the Yoga postures will last. All we need is enough to allow us to get back to sleep I guess.
For the past year or more I've been reading about red light including the far-red spectrum. Depending on the area you want to treat will determine the wavelength (measured in nanometers (nm)), distance and time. So the other day I read that if you want to encourage your skin to have more collagen (I'm shallow) you should use between 650-670nm for 10 minutes at a distance of 10 to 12 inches from your skin. For organs I read you're wasting your time unless you use 830nm, but that's just the opinion of a few people and this is all so new. We need some people on here to really dig into this and come up with some parameters.
Okay here is an attempt to outline a kind of meaningful protocol that incorporates some of the ideas I have read on this forum and elsewhere. I am no expert and have not cured myself of this disease. However I do feel better and I have learnt that doctors generally take little interest in nutrition and exercise yet the right approach is often a far more powerful weapon in the armoury of restoration to health and well being than drugs (though of course these have their place). My example is the complete remission of my husband from type 2 diabetes through changing what he eats.So here goes: what has to happen in an ideal world is a strict attention to glutamate and oxalate, a time restricted pattern of eating, no refined carbs, no grains, no sugar, a little fruit, cheese and alcohol. Loads of healthy fats (olive oil, grass fed butter, coconut oil) eggs, meat, fish, water, and above ground vegetables. In other words a keto paleo diet with at least a 14 - 16 hour window of no food each day.
Everyday three leg stretching sessions, yin yoga stretches see leibshner und brach therapy on YouTube. Incorporate Fascia rolling of legs and gun massage of leg muscles each time.
After lunch take vitamins e, b12, high dose b vits, multi amino acids, (I use Span ‘cardio boost’) cod liver oil and alpha lipoid acid.
Before dinner (7pm) I exercise and take taurine, gaba, l-Theanine to calm my body plus all important 1 tablet ferrous bis-glycinate.
When I wake in the night I do another stretching session, a ten minute bout of red light therapy and take high dose magnesium. I do this again when I wake again.
Does this work? Well no, not completely. But I do get some drug free sleep. I feel more positive and my body and my restless legs are a lot calmer. When I get desperate and take 15 mg codeine or 500 mcg clonazepam they seem to work better.
Do I stick to my own rules? No not completely but this disease does keep me trying quite hard. You will know the dopamine receptor reasons why it helps.
Bravo! Yes indeed that sounds like the best foundation which we should all lay down for ourselves or at least try to. It does indeed incorporate the best advice on here. My only modification is that I would not take the iron before dinner. That would not help me at all if I took it that way. I would take it approximately one hour before bed (on an empty stomach) or even two capsules if your RLS is anything but mild.
Better than restricted calories would be to restrict carbs as then you would not be punishing yourself by making yourself feel hungry. Sugar and bread stimulate the hunger hormone so if you cut those out your hunger pangs will not be so strong and you will reduce inflammation in the nerves which I believe to be the cause of most RLS.
Yes, yes, yes. I tend to stick with proven (at least somewhat) treatments which include fermented foods. I believe that our gut microbiome (and possibly tissue microbiome) greatly affect and maybe even underlie our health and any diseases we develop. I gave up tinkering with my gut microbiome because of the enormity of it all and conflicting studies. Only in the last year or so do I feel that the scientific community is getting closer to understanding which bacteria (and virus' and fungus) do what and cause what.
Yes...again. Taurine is important and I used to take every night but these days I forget sometimes. It's so essential that I recall years (and years ago) the FDA requiring it to be added to baby formula. I should look that up. Not a fan of baby formula. A necessary evil I guess. I believe that whole generation (me for example) where doctors told our mothers that Formula was superior to breast milk are now suffering more from allergies and auto-immune disorders than previous generations.
When I'm having a really bad flare up, playing a game of candy crush (or suddoku) on my phone for 15 - 30 minutes can sometimes distract the rls signals in my brain enough to let me get to sleep afterwards. Worth a shot? Good luck. I'm so sorry you're suffering.
I am so sorry that you are going through this. Get in touch with Dr. B at Stanford Sleep Center in Redwood City California. There are treatment options. The medical people who are advising you presently are under-informed. There is help.
Dear Hoochybaby, I, too, was told this about 4 years ago by my neurologist, that we had tried everything and there was nothing more he could do for me. So he referred me to a pain management doctor who prescribed oxycodone which worked well for awhile, but then I started needing more and more to get the same benefit. So I weaned myself off of that and found a doctor who prescribed buprenorphine, and that has helped to a point. Like the other meds, it started out working great, but then I needed more and more to keep my RLS at bay. I currently take three 2 mg sublingual buprenorphine a day which helps but not completely. Like Lotte suggested, you ought to go online and search for kratom. It honestly is like a miracle for me. Plus, I can get it online and I don't need a doctor to prescribe it for me. I eventually found a wonderful neurologist in a nearby state who has found a good mixture of 3 meds that helps my RLS, but I still don't get complete relief. I still suffer in the morning and up until early evening when I start taking the meds this new neurologist prescribes for me. But during this time that I am taking the mixture of 3 meds (from early evening through the night) I feel like a person who doesn't have RLS! I sleep all the way through the night without ANY symptoms of RLS!! Unfortunately, he has me taking all these meds only at night. I wish I could take something the rest of the day (morning until early evening) to stop the RLS symptoms all day long. Anyway, I just wanted to share my experience, especially since I had the same experience as you did with a neurologist who pretty much gave up on me. If you do decide to go the route of opioids, go see a pain management doctor. That is the kind of doctor that will prescribe the opioids that can treat your RLS when it is at an advanced stage like mine is and like yours sounds like it is, as well. Don't be afraid to go that route. They really do help! And you really should consider kratom. It works almost immediately for me and lasts quite a while!! Sorry for the lengthy reply. Good luck!! I hope between my suggestions and others on here you can find relief from this relentless RLS.
First of all, I am so very sorry that you are dealing with all of this and that your doctor is making it worse. I am taking 2 mg of the Neupro patch and 450 micrograms of Belbuca. I struggled with finding the right regimen to treat this cruel disease but Dr. Buchfuhrer has helped me tremendously. I tried neurologists, sleep specialists, Johns Hopkins…my Doctor there took me off 6mg of neupro and told me to go cold turkey and get the help of a pain management doctor. After my 5th day of no sleep, falling multiple times while pacing back and forth begging for a solution, I was having suicidal ideations. Then I found this site. These amazing people suggested Dr Buchfuhrer and I am forever grateful. I wonder if there is some way he might help. He is in California but after my initial appointment he has been seeing me remotely as I live in New York.
Regardless, I wish you the best and I will be praying for you. If there is ever anything I can do please let me know here. Even if it’s just for support or to chat with someone who has gone through some of what you are experiencing.
Thank you for your reply I live in the uk and I think finding a rls specialist is more difficult than the us
I have bought the rls book by dr Buchfuhrer and find it most useful if a little out of date
My neurologist is reluctant to prescribe a stronger opioid due to my age
I was on the strongest dosage of codeine 60 mg at night and Pregabalin 150 mg I couldn’t take a larger dosage due to heart palpitations
Every night I walk the bedroom for hours to find relief I try a warm bath massage etc etc with limited relief but now I doubt if I will ever find relief I dread nighttime I try to find distractions like crossword reading etc but I’m at the end of the road now
So sorry to read this, the below comments read good, especially when I know i have this to come as I get older and it's in the family. GOOD LUCK 🥱 trying to get some sleep 🙂
I really sympathise with you. I feel your pain, I really do. I suffer with hot feet syndrome which gives me mild RLS. I also have multiple health issues one of which is neuropathic skin pain all over my body. (I'm on max dose of gabapentin 3x a day) As with you the doctors dont really know what to do. But and there is a but, I have had some of my of my neuropathic conditions treated successfully with acupuncture. You have to pay for yourself but it is worth a try. Don't give up hope just yet. If you live in west sussex I know a brilliant lady aculuncturist.
Thank you for your kind reply Unfortunately I live I West Yorkshire
Some years ago I saw online a chiropractor who specialistised in restless legs but he lived in Colchester and had a practice nearby but I was so desperate at the time I traveled down there the treatment was a so called positional body treatment where he turned the legs both ways in different positions and then applied a tens machine electrodes to the toes for 30 minutes
I traveled there on four occasions ( at great expense both the fee and train fare run into hundreds of pounds) At first I thought there was an improvement but it was a placebo effect. After 4 visits the Dr still wanted me to go to his clinic for so called “ top- up treatment but after all the travel etc I found it wasn’t worth the cost and time because I wasn’t finding any improvement so I was back to square one and considerable out of pocket
That is NOT how acupuncture works. He seems like a bit of a charlatan. Just after your money! The lady I saw uses western and eastern acupuncture and it was very effective. I just paid on a bed for an hour with needles stuck in me. The position of the needles is key to the problem. Is there no one at all in your area who just does traditional acupuncture?
The trouble with conventional medicine is that doctors treat the symptoms with pills and don't treat the cause of the condition with a proper cure.
I have to admit I had it for vulvadynia and IBS and neuropathic skin pain. It worked brilliantly. But you have to have about 4 or 5 treatments. I haven't yet tried it for RLS. I ran out of money. Acupuncture if done properly is really good and it isn't painful.
Hi Malcolm. I was wondering how long you have been on tramadol. I’ve heard that it augments and that patients begin to have a rebound effect quite quickly. I’m hoping this isn’t an issue for you and hoping I may be able to use it too
HelloI started out many years ago taking Ropinirole and one 50gm Tramadol capsule. I augmented on Ropinirole and went through the process of withdrawal from Ropinirole with the help of adding another 50gm Tramadol capsule. That was I guess about 7 years ago. Since then there has been times when I experienced RLS to the point when I thought Tramadol was just not working for me. On a couple of occasions I thought I might try to "reset" the med by stopping for one ot two nights. If I recall the withdrawal for just one night & one day was horrendous . No sleep occurred at all! But the reset worked and I was back taking 2 x 50gm capsules and benefitting from 8 hours sleep!
However of late the RLS seems to kick in after about two/three hours sleep but after about 20 minutes of stretching exercises I creep back into bed and enjoy a further 5 hours sleep.
There you have it. For me 100gm Tramadol works and long may it be so!!!
Thank you for sharing your story with me. I tried to withdraw from Neupro but the crazy doctor tried to have me removed from it cold Turkey. I tried for 4 days. No sleep for 4 days! It was the worst thing I’ve ever gone through. I had suicidal ideations on the 4 th night. I went back on Neupro. I’ve now come down to 2 mg of Neupro. I was on 6 then 4. 2 works but I’m also on Belbuca. I’m about to move to Mexico and I won’t be able to get the Belbuca there so I’m looking for a substitute. Maybe tramadol is the answer. I hope and pray that it works forever for you.
Have you tried an antidepressant like Cymbalta for your burning hot feet. It's worked wonders for me and has been the only medication doctors and I have found that works. Although it can make RLS worse it's a trade off I'm happy with as we upped the opioid to offset the RLS.My hot feet are just as intolerable as my RLS and make it impossible to sleep if not treated.
I'm on max dose of Gabapentin and 10mg of steroids to treat neuropathic skin pain and also itchy rashes due to an over active immune system which the steroids damp down. I also have severe IBS. The side effects of the cymbals might make the rashes worse. I also wouldn't want to make the mild RLS worse. I really wouldn't want to go down the road of taking anti depressants. My daughter has had trouble getting off anti depressants. I also have to consider what the side effects might do to the IBS. I found the acupuncture was a help but I can't afford it any more. At present I'm treating the hot feet by keeping them as cold as possible. I've got ice packs, a pet cooling pad, ice gel slippers (they are bliss) and i soak my feet in ice water before bed. I think they will feel better once the weather gets colder. Thank you for the suggestion though. All suggestions are very welcome.
That’s awful foe you.The thought of ending my days in a constant state of insomnia appals me.
I am 70 & keep hoping for a breakthrough.
The GP’s are under huge pressure to reduce their opiate prescribing due to all the inadvertent addiction out there, but they just might agree to ongoing prescription /a change if you explain & say & sign that you have been advised & take personal responsibility ( I was a medic & so know a bit how the systems work )
I haven’t yet taken the plunge as am concerned about addiction but might one day. So far I take 30mg codeine but it isn’t enough.
I gradually came off pegabalin as it had stopped working & am no worse off without it. That may then give more scope for a more effective opioid eg buprenorohine which accounts on here say is very effective .
We are more likely to run into side effects problems the older we are though so great care & very low doses would be needed at first.
There is this more recent info that dipyridamole helps a bit, currently unlicensed & of course side effects but I am also toying with trying to ask to try it.
That’s interesting and great to know some experts are now using it off licence. Can I ask where you are based and whether you take dipyridamole or something else as well and what dose you take & when?
I am in the United States. I take 75 mg 4 tablets twice a day 4 hours apart. I take it in conjunction with a couple other meds for RLS (buprenorphine and Horizant). So I fully believe that it is this combination that helps control my RLS as opposed to only taking one of the 3.
Horizant is a form of gabapentin. What is interesting is that gabapentin was one of the first meds I tries, but it was too sedating for me. But Horizant doesn't do that to me even though it's considered a form of gabapentin.
Hi, I was prescribed that after having a mini stroke. It's a blood thinner. I couldn't take it because it caused severe indigestion. I'm just wondering what the connection is between a blood thinner and RLS? It's great that it's working for you though.
Gosh, I have no idea how it works and why a medicine for blood thinner works so well for RLS. Interesting, though, huh? Did you notice an improvement in your RLS symptoms while you were taking it for blood thinner? Hope you're recovering well from your mini stroke!
It was a few years before the hot feet and RLS started. Can i ask, do you have or have you had a bad back? I'm asking sufferers the question to see if there is any connection. Mine started at the same time that I got a muscular back problem.
You know, I do have lower back pain and my back pain seemed to start not long before my RLS started. I have always wondered if there is a relationship between the two, as well. It would be great to get an idea of how many people have both. I have never had my back pain treated. So I don't know if treating my low back pain would get rid of my RLS symptoms. 🤔
So far it seems that RLS suffers do have a back problem of some sort. But ive only had a few people answer me. I wonder if it might be due to a nerve being pressed on or pinched in some way. Even muscles can affect nerves in the back near the spine.
I would love to find out that it's my back causing my RLS and that I can get my back pain resolved and my RLS will be gone. But I always heard on this forum that it's a dopamine thing or a thing where the brain isn't getting the iron it needs. So I kind of gave up on the back thing. Maybe somebody else on here will read our messages and offer some input.
It would be worth seeing a sports injury massager or an osteopath for your back. A massage specialist might be the first port of call. It's worth a try. I think my back problem might be a disaligned pelvis.
You have already been given great advice.I wanted to empathise with your horrible situation. I agree I would contact Dr.B. And show his email response to your doctor. Sending love and prayers for a solution.x
So sorry to hear about your struggles. Have you ever tried an IV IRON ? That could help.
Other than that, maybe you could try travelling to a different city. I don't live in the UK so I don't really know about the distance and stuff but I remember someone here talking about a doctor in Newcastle who was sympathetic and had some knowledge about RLS.
Codeine is too weak relatively so you have yet to exhaust your options. There's oxycodone and I've read a lot of people in the UK have had access to Buprenorphine. Joolsg could help you with that.
Good luck. I hope things get better for all of us.
While I’m sorry to hear of your suffering at the age of 80, there is such a treasure trove of good advice here. I will throw in my hat in that taking iron was what did it for me. My iron was at seven and I got it all the way up to 247. I also watch my diet as sugar is a huge trigger. I Usually don’t eat after 3 PM and I’m certain this helps too. I have oxycodone and Valium and can use them if needed, but try not to and usually don’t have to. I agree that worrying about addiction is probably your last concern. Your comfort should be the main goal at this point. I hope some of the solutions listed here will work for you.
This makes me so angry. I have been in the same postion as you but I am managing my RLS with gabapentin and 120mg of codeine but I still suffer massivly with insomnia. For about the past 2 years my insomnia has been so bad I wanted to take my own life as I just couldnt take any more. I was getting about 40mins of sleep a night. It got to the point where I was taking massive amounts of codeine gabapentin and sleeping tablets to knock myself out in the hope that I would end up in a coma. My mental health was really bad. I was referred to the mental health team but I had to threaten to buy horse tranquilisers or Heroin off the street before anyone actually took me seriously. I was even taken to AandE in an ambulance as my husband was so scared I was going to kill myself and I was discharged because they said they coulnt admit me for insomnia. I begged them to admit me but they wouldnt. I was prescribed Venlofaxine and olanzapine and I pretty much started to sleep right through the night immediately. Infact for a good week or so I was sleeping 8 hours a night without waking up. Now I wake up about 2am and I do smoke cannabis which helps massivly with my sleeping.
I do not take any drugs for my Rls, which is admittedly not as bad as some people's on here, but I have had it since (on and off) a child, so it is not caused by any injury, etc. as some people have had happen. So, I myself do not know about weaning off of or lowering a dosage of any drugs. However, I have done a lot of experimenting on myself and reading up on alternative ways to manage it. Besides taking iron bisglycinate and magnesium citrate and b complex (for the folate) as is highly recommended for RLS, I find GABA (or taurine, which one's body can turn into GABA) to be the most helpful for ME. Gaba the amino acid (not gabapentine). Gaba that is the neurotransmitter in one's brain is responsible for calming all the nervous systems and the brain, so it is very helpful with sleep and Rls. That was probably one of the most difficult and harmful problems I had, my issues with sleep, multiplied by trauma from a family tragedy several years ago. (So I don't blame my sleep problem only on RLS.)
The book that was most helpful for me in getting this all under control is THE MOOD CURE by Julia Ross. It has an entire chapter on sleep, and does address rls (since it is (only) one of the causes of not being able to sleep.) The book explains the neurotransmitters /endorphins in the brain and shows you how to figure out which one (or ones) you are depleted of. Dopa is one of them that can be responsible for RLS, but Gaba is another one. For me it has been Gaba. I found, for myself, that dopa did not have the helpful affect that Gaba has had repeatedly. Different people have different needs. Ross explains how to replenish those neurotransmitters./endorphins Her book is available on Amazon, which is where I first came across it a few years ago. She runs a few clinics in California and so has had a lot of experience with real people, not just theories.
Some people do not find that Gaba supplements help or even do anything at all. (With some 'experts' it is rather controversial as to its usefulness.) That Taurine works better for them. Or L- theanine. I find, myself, taurine is somewhat helpful , but Gaba works really well for me. By this I mean I can now sleep deeply mostly thru the night (I used to have anxiety attacks or strong wakefulness in the night, or not even be able to get to sleep.) Before bed, I take one 500 mg capsule, opened and poured in my mouth. It tastes mildly sweet. When I wake up later, usually for the bathroom, I take only half a capsule, otherwise I will sleep thru my alarm (classical music radio station.) If I am feeling some bits of RLS, this will take it away. Tho sometimes I have used magnesium oil rubbed on the offending area, which works within minutes.
Ross recommends starting at a low dosage of gaba, such as 100mg and going up as needed. That is how I came to 500 mg, when first going to bed, and 250 mg in the night. (Altho, in the beginning I did need to take more than I need now.) She also recommends taking small amounts in the afternoon, the evening and then before bed, to build up supplies - for any of the amino acids she uses for the various problems. I did this to start out. But you can read about that in the book.
I am not saying that this would work for you for sure, but I am recommending the book and its information as something that would be helpful for you to read. You have the issue of the prescriptions, which I do not have. Ross does address drugs used for various problems and what to do, so you perhaps will find some pertinent info in there. I hope this is helpful.
You are at the end of the road so my suggestion although simple won't hurt. I've had rls since a child and not far behind you in age and a couple things have helped. Taking 500-700 mg magnesium daily, go to bed earlier before you get overly tired, sleep on your stomach which is very hard for me but have noticed a big difference since doing it, and most important of all--prayer
hi, I just saw your post, and like to share some of my experiences with pregabalin and oxycodone I am presently taking. I am 73 years old and not able to tolerate 300 mg of pregabalin and it gives me severe heart palpitation and nervousness. I am presently taking a low dose of oxycodone 5 mg although I am suffering from severe, refractory RLS, but 5 mg of oxycodone seems to work for me so I am wondering if a low dose of oxycodone might be possible in your case. I hope that some low-dose opioid can alleviate your night-time symptoms, and I have been there and am still experience this unpleasant sleepless nights so I am sending you heart-felt sympathy and love to you. Don't feel discouraged. I don't know where are you located. Here in Los Angeles, Dr Buchfuhrer, a very compassionate and RLS expert who might be able to respond to you if you can write to him, he often responds within 36 hours. Good luck to you, my heart is with you.
Hoochy, according to one of your previous posts, 2 months ago you were (still?) taking 0.044mg pramipexole. Meanwhile, hade you stopped taking it? And were you on a higher dose longer ago? If you stopped it, you may still be suffering from increased symptoms in the aftermath. Especially if you came down from a higher dose of Pramipexole.
Also, re your codeine dose. 60 mg is maybe on the high side. My own gp, confirmed by my neurologist, said it is generally better to take a (much) lower dose of a higher potent opioid. Smaller chances of side effects.
I don't know how easily you can get appointments with your gp, and whether there are other doctors in the practice. If you can, try to get an appointment with another doctor. Being or send in advance the recent May Clinic Proceedings updated guidelines. And ask to be switched from codeine to a high potency opioid, like oxycodon or Temgesic. And if you are still taking the pramipexole, consider stopping it. The high potency opioid can help to deal with temporarily increased symptoms when you do stop the pramipexole. Also, if you can handle the side effects, it may be better to take the2x75mg pregabalin both in the evening. More effectiveness for your rls symptoms and if it makes you feel dizzy or sleepy, that is less of a problem at night.
Time to have a welk-prepared discussion with you doctor? And maybe bring someone along whom you will inform thoroughly first. I somehow have the impression that with better care your symptoms can be much less than they are now. I hope you achieve to get there soon.
Thank you LotteM No I no longer take Pramipexole I stopped about a month ago I was cutting 0.088mg in half some months before
I think I told you that when I had my telephone consultation with my neurologist ( I have never seen her!) I asked about taking a stronger opioid and she said that due to my age she couldn’t recommend it so after a telephone consultation with my GP who again I have never seen we decided to cut back on the codeine I now take in an evening two 75 mg pregabalin and 45mg codeine and in one months time cut back to just 30 mg codeine
I'm 74 years old and have had heart palpitations much of my life due to a leaky but functional heart valve. I take 5mg of amlodipine besylate for my high blood pressure. That drug seems to have a positive effect on my palpitations as I have very few now. I also have had rls for about 25 years. Ropinirole, fortunately, worked for me for about 20 years before augmentation kicked in. I had so few symptoms that at times I wondered it I still had it. Because of augmentation I weened myself off of ropinirole over a 4 month period, from 3mg to none. I am currently on 300mg of pregabalin, taken about 2 hours before bed time (my doctor says 300 mg is the maximum I should take). Its not perfect but I do get 5-6 hours of sleep a night. You might suggest raising the dosage to your doctor. Hope things improve for you !!
i would keep going with the codeine. if i try and reduce it is torture. Addiction at your age is not an issue the GP should be raising. I think its cruel to suggest you reduce it
Hi Cant trust Doctors well not in NZ DO whats best for you keep taking codeine have a glass of sherry or sleeping pills My partner has restless body from dialysis and anemia not much works against RLS so what ever works I say keep going 😀
So many helpful replies! We are all empathetic and that's why I like this forum so much. I take Tramadol, which sorta works most nights for a couple hours. However, I just gave up sleeping at night and I sleep during the day - usually 5am to noon. Since the natural dopamine circadian rhythm lends to this cycle, I don't fight it. During the night I bake, exercise (bounce my legs on a big exercise ball or use my Gazelle glider), watch Korean dramas on Netflix, and clean the kitchen. Sometimes play with my house rabbit. I'm 70 years old, so I do whatever I please to keep me happy! If you are not so bothered during the day, maybe consider flipping your sleeping hours???
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Reduction of Ropinirole 
Another rls night 
GP knew less than I did about RLS :’-(
At my wits end 
