Hello, I’m happy to stumble across this supportive and Knowledgeable community.
I’m 36, and started struggling with a frozen shoulder in April. I was prescribed co-codamol, then Tramadol for pain relief.
After a few weeks, I started really struggling with restless legs. I’ve tried a number of things, but I can’t get more than 1-2 hours of sleep. I’m a keen meditator, but find that meditation in a sitting position has become impossible.
After getting a steroid injection for my frozen shoulder, my pain has diminished, so I no longer need my Tramadol. However, I have discovered that I I take one 50mg capsule around 8pm, I can sleep through the night, with no RLS symptoms at all.
I now have a dilemma. I’m aware that my mild opioid use (just one 50mg capsule twice a day) may have kicked off the restless legs. If I don’t take one before bed I’ll have a difficult night and won’t be able to function properly the next day.
I don’t want to become dependent on the Tramadol, but at the moment, they are an absolute gift in helping me sleep. My doctor is unlikely to refill my prescription, and offered nothing useful as an alternative. Any advice would be appreciated- I really feel for all you sufferers- it’s driving me mad!
(I should note I had RLS when I was a child, but then it disappeared for almost 30 years- my dad is a long term sufferer and has never really found a solution)
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Daytripper72
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Welcome to the forum. You will find lots of help, support and understanding here.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Thank you for the speedy reply. I live in Scotland and I am Male. I saw my gp last week and he didn’t seem to know much about it- in fact, he pulled up the NHS guidance page in front of me and skim read it, before offering me a blood test to check for an underlying condition.
I had the blood test, and I am waiting for the results. I’m not sure what he’s looking for specifically, or if my ferritin or transferrin levels will show from the blood test he’s ordered. I’ll have a word with him when the bloods are back and request a full iron panel if the current test isn’t sufficient.
I am taking over the counter iron tablets and a good probiotic, but I've only been doing this for a week or so, and it hasn’t helped at all.
The idea of having to cope with this every night is daunting, but I appreciate the support and advice. Thanks again,
Most doctors don't know much about RLS as it isn't taught in medical school. If needed print out the appropriate sections of the Mayo Algorithm to show him.
And you won't have to cope with it every night. If what I have advised doesn't work there are other things to try.
Hi Sue. I got my bloods back, serum ferritin level is 102. Discussed the results with doctor via a phone call appointment and he said my iron levels are fine, and he won’t do a full panel, i.e transferrin saturation test because results suggest there isn’t a problem. Everything else looks normal.
He did suggest that I should take something for my RLS symptoms because they are concerning…it’s every night and occasionally through the day.
I asked for pregabalin, and he told me it was addictive, cause excessive drowsiness and strongly advised against it. I told him I didn’t want a dopamine agonist because of what I had read about the side effects and the potential of augmentation, and making the RLS worse in the long run. He seemed dismissive of this and then offered me a Pramipexole prescription. I sort of misheard him over the phone, and he didn’t mention any side effects. He told me it was up to me, but he recommended taking this for a few days, seeing how it goes, doubling the dose if I don’t notice a difference after 4 days then booking a return appointment in a month.
I feel daft for being led down that road, and after reading up on his recommendation, realising what it is, I don’t want to take it. He was so dismissive of the pregabalin idea that I feel I’m going to have to fight hard for it.
I’ve been waiting for this appointment for 2 weeks, and it looks like I’m going to have to wait another 2 weeks to speak to him again. I’m annoyed at myself for not being more prepared.
Am I right in thinking I should just avoid the prescription and argue my case again when I get another appointment.
I wouldn't worry about the transferrin saturation percentage as if it is less than 20 it just means you nee to take more iron and it is rarely over 45%. Just next time you have your ferritin tested ask for the full iron panel.
You could continue taking iron especially since your ferritin is just barely over 100 and as some experts think ferritin should be over 200 or 300. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Pregabalin is very rarely addictive and that is usually when a person has a substance use disorder which you don't.
Do not take the pramipexole. Tear up the prescription.
Print out the Nice Guidelines on RLS. I can't access them because I am in the US, but I believe they say "First-line recommended drug options for people with frequent or daily symptoms are either: A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or an alpha-2-delta ligand" which is gabapentin and pregabalin.
You can also print out the appropriate section from the Mayo Clinic Updated Algorithm on RLS which is basically the bible for treating RLS where it discusses how dopamine agonists like pramipexole are no longer the first line treatment because of augmentation and that gabapentin and pregabalin are. I gave the link above.
The RLS-UK website says the same thing as Mayo under medical treatment so you could print that out too rls-uk.org/medical-treatments
Yes pregabalin can make you sleepy but that is what you want at night anyway. It is rare to cause excessive drowsiness.
Reducing any opioid can trigger RLS, so if you don't want to be on meds forever, it may be worth reducing now and trying something else for frozen shoulder/sleep.I use medical cannabis with THC for occasional MS pain and it helps sleep. It may be an option as you don't need to take it every night.
The last two nights I’ve steered clear of any opioids, and my legs have gone crazy, resulting in 1-2 hours sleep which makes life really difficult.
I’ve been looking at my diary, and the symptoms started after I had been taking co codamol daily for 3 weeks. Is it possible for 3 weeks use to trigger these symptoms? I will keep off the opioids for now, but if they were the cause, I imagine I should start to feel some kind of relief within a week or of abstinence?
I appreciate these questions are not fully answerable and experience will differ from case to case. Lack of sleep is making me anxious and impatient!
It would be great to get my hands on some medical cannabis to manage the symptoms, but unfortunately being in Scotland means I cannot buy it legally. I could get some of course, but I have no control of the strength or strain. I recently smoked a little hash one evening but it didn’t even take the edge off. Thanks again.
My sister had severe RLS for 6 weeks after stopping opioids prescribed after surgery. She didn't sleep for weeks, but slowly the RLS disappeared.So, chances are you will be RLS free soon.
Cannabis is legal in Scotland and England since 2018 for pain relief.
Try Curaleaf pharmacy. You have to pay as it's not free on NHS prescription.
I use cannabis oil with 20% THC. My friend uses flower to vape for her fibromyalgia.
I second Joolsg as I was going to suggest the same. Continue to bite the bullet a bit longer and most likely it will go away or at least lessen considerably. Difficult to know, however, how long you should try.
Sorry I can't offer any advice re the tramadol, but I do feel your distress re the meditation. I, too, am a long-term meditator (and long-term RLS sufferer), and I find that RLS has a severe impact on my practice. I have searched many forums and other sources to find anyone else that has this problem while meditating, but you are the first I've come across. I've tried meditating through it (result: extreme jerking which knocks me off my stool), and shifting positions, but generally I have to give up. Happily, it doesn't start up all the time, and often not til I'm almost at the end of a session, but it is very frustrating. I'd be happy to hear from any other meditators on this forum who may have found a way of managing the problem. Meanwhile, good luck in resolving your current difficulty.
I’ve been told by others who don’t suffer from RLS to use the sensation as part of the meditation, as you would with any other object, breathing etc. In theory, I agree, but as you know in practice it is just infuriatingly impossible. I feel completely defeated by it.
That helplessness of attempting to witness the sensation and not ‘give in’ to it, move or get frustrated is really difficult to come to terms with, and I strongly sympathise with your struggle. Every time I react, it feels like failure and I miss that deep sense of calm and connectedness.
When the severity calms I look forward to committing more time and energy to meditative practices. I recognise that I’ve taken that ability to sit still and reflect for granted! Good luck to you too.
I’ve also tried to “witness” the sensation and not move but it’s impossible. It’s absolutely not a failure though, meditation is about accepting and observation and if you add the precondition that you must remain still you have allowed the thinking mind to interfere with your observation and are chasing an objective rather than witnessing your situation. Another forum member likened the urge to move to breathing, you can possibly delay the breath but you will eventually have to breathe, it’s not a choice. I try to meditate early in the day when I’m most awake and least likely to have twitches and if I do occasionally get a twitch I stop and accept that it’s not to be at this moment. Incidentally I do believe that meditation has allowed me to cope better with RLS and reduce its impact on me by simply accepting that I will have to get up at night and move around for a while. I used to be frustrated and resentful when I woke which just made everything worse, what you resist, persists as they say, so while I do feel tired and spend one to two hours most nights awake and moving I find I can let it go emotionally and enjoy my days when I’m lucky enough to be mostly symptom free. All the best.
Thank you for your wise words and for sharing your experience. You are quite right that believing that I should be able to work through it is allowing the thinking mind to predominate. It's something I hadn't considered before. Best wishes.
Thanks so much for replying. I hope that Munroist's comments below will resonate with you also, and will help as you continue with your practice. I now feel less alone with it! Best wishes.
I used to take tramadol for my rls( I have used opioids for many years for severe symptoms). Tramadol worked well for a long time.If it's working for you can you continue to use it? At least until your ferritin os checked.
my experience has been trial an error. The dopimaine drugs and gaba type drugs caused terrible side effects. My only saving grace has been lose dose opi@@ds. Have been doing this for a few years now. I recommend reading the Mayo Clinic RLS algorithm. Great document. Show that to your doctor and discuss what is best for you to try. But I am not surprised you got some relief from Tramadol. As I seem to do best with the pain type meds as well.
Maybe that you need to tackle the cause of your RLS rather thamn medicating to hide the symptoms. Here is a doctor who is at odds with his pill pushing colleagues: youtu.be/WO7iisgt77Y?si=O6H...
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