I've been hovering around these boards for a couple of years now but this is my first post.
I am a 39 year old male. As a child and adult sometimes after walking a lot during the day I would have the urge to move my legs when I was in bed trying to sleep, it would feel like I had excess energy in them. I eventually worked out that if I lay on my back and walked the air eventually the feeling would subside and I could get some sleep. This wasn't really a massive problem and it would only happen occasionally (twice a year or so. Sometimes it wouldn't happen for a couple of years).
When I started seeing my partner at age 27 she would complain to me that I would kick her in my sleep and on occasion during my sleep I would raise my legs and leave them in the air for an hour or so. We used to laugh about this.
During September 2021 I was prescribed Omeprazole and one night whilst reading in bed I noticed for the first time a new sensation in my right leg which felt like energy building up and I would have to keep tensing the muscles to get relief. A few weeks later during the same month whilst watching a film I had the worst feeling ever going through the left side of my body (leg and arm). It felt like massive energy building up in my arm and leg that could only be relieved with stretches and movement. I then went to bed and thankfully when I woke up it had gone away.
I now strongly suspected that I had RLS. I read the NHS guidance and thankfully found this site. I then arranged to see my GP. He didn't even want to give me a blood test as he said that it was unlikely to show anything. I asked him to check my iron levels. I then had my follow up appointment and he told me that my iron levels were normal (although another doctor told me they were low). He told me that the dopamine agonists were very strong drugs and he didn't want to put me on them at the age of 37. I told him about augmentation which he had never heard of. He recommended that I grin and bear it (far easier said than done!!).
Luckily I didn't have another episode of RLS for over 2 years, I was taking ferrous sulfate and magnesium tablets and I thought that must have sorted it.
I haven't taken magnesium or ferrous sulfate for 6 months or so now (I have started taking ferrous sulfate every other day for the last 6 days and have had 3 tablets). But during the last week I have had this constant feeling in my left leg that makes it nearly impossible for me to get comfortable. I feel like I need to have my left leg constantly extended and sitting down is becoming impossible. It's happening all day not just in the evening. I'm going to arrange a GP appointment but would be incredibly grateful for any advice on what to ask him. It's terrible that GP's have such little and outdated knowledge of this awful disorder. My GP is actually really good and it's not his fault. I'm sure if I go in with the correct information he will give me a fair hearing. I'm based in Bristol.
Thanks in advance.
Tim.
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Fantastic that the GP wouldn't prescribe dopamine agonists! Maybe the message is finally getting through. They're dangerous and are no longer prescribed by experts.However, NICE and NHS guidance state that full iron panel blood tests are required and that iron treatment should be started if serum ferritin is below 75ųg/L.
So get new iron tests.
Also, omeprazole blocks iron absorption.which is why it triggered worsening RLS for you.
If you can switch to a good probiotic and gaviscon, then do so.
Then as soon as you get results, start taking ferrous bisglycinate every OTHER night. This can stop hepcidin blocking iron absorption and raises iron quicker than taking iron daily.
If you can afford it, a private iron infusion costs £800 & will probably resolve all your RLS. You then won't need any meds.
Thanks so much for your reply. Can being anxious about RLS make you imagine it? I'm really anxious at the moment. I've had a stressful few years. I take Omeprazole every other day. I do have terrible acid reflux. I hadn't been taking Omeprazole for very long at all before I noticed RLS. It was only a week or two if I recall correctly. Can it really affect RLS that quickly?
When I went to my GP I only had a standard blood test. What specifically should I ask my GP to do?
Anxiety & stress can definitely increase RLS.And yes, taking PPIs can trigger RLS instantly. It's why they are listed as medications to avoid.
Acid reflux might respond to daily Symprove or VSL probiotics. They're the only probiotics that gastroenterologists recommend. Symprove costs £40 a month, but I know a few people whose acid reflux has disappeared after taking Symprove.
This is NICE guidance, setting out the blood tests required. Your GP SHOULD be aware of NICE guidance.
You need to ask for a morning, fasting, full iron panel blood test to include serum ferritin.
I'm wondering whether iron infusions might be needed repeatedly so as to make that 800 pounds a recurring expense. (I can get over 4 years worth of low-dose methadone for that amount.) Thanks.
Yes, but this person could be med free if the iron infusion resolves his RLS. Some people don't need repeat infusions and as this person has IBS, iron pills will be ineffective, as they won't be absorbed in.the gut and will probably exacerbate his IBS.Methadone is extremely difficult to get in the UK, and Buprenorphine. Many Doctors,especially GPs are refusing to prescribe any opioids.
If you are kicking your partner in your sleep you probably have PLMD (periodic limb movement disease). I would ask for a sleep study. Luckily it is treated the same way as RLS.
Omeprazole can make RLS worse. I would suggest Gaviscon Advance.
Ask your doctor what your ferritin is from your iron test. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Doctors will say your iron levels are normal but what is normal for others is not normal for those of us with RLS. It's quite possible your ferritin wasn't even tested because that is not normally tested when a iron test is done. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Your symptoms do sound like RLS although having them all day and having the new symptoms do warrant having them checked out.
Your doctor, by the way, was correct. There is no test for RLS. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. Meeting these conditions is the way one diagnoses RLS.
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) 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 uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile 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, 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, 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 on the gaviscon, take it about 30 minutes after eating. Take it 4 hours before or 2 hours after taking iron. Don't take it within 2 hours of taking gabapentin.or antihistamines.
If you have IBS, oral iron will not be easily absorbed, so you should push for an iv iron infusion. Several UK hospitals will do them on the NHS for RLS, but others will refuse.Symprove probiotic would definitely help your IBS as well as your acid reflux.
The Iron Clinic in London will arrange an infusion privately for £800.
blood tests. RLS is diagnosed by symptoms. Your doctor should try you on different meds until you find something that works. Watch out for triggers. Mine is sugar so I try not to consume any at night.
The way your RLS developed over time is very similar to mine, I think you described it well. However mine is currently restricted to the nights which is more common. There can be many triggers for RLS as you will have seen in Sue’s extremely comprehensive posts and one I didn’t see mentioned is neuropathy or nerve damage for example after a slipped disc, sciatica or surgery sometimes. I mention it because you say your RLS is mainly one leg and happens during the day which is a little unusual and might be related to something physical.
Go into any drug store and look at the huge display for PPI (proton pump inhibitor) medications. You would think there is an epidemic of acid reflux, GERD and other digestion issues - all supposedly caused by some mysterious release of excess stomach acid! The disconnect between natural medicine and traditional medicine is enormous! Ironically - and it worked for me - INCREASING stomach acid was a key to controlling GERD.
Yes, in fact I have found that the best thing for me, for curing acid reflux is a tablespoon of good apple cider vinegar (the one with the cloudy stuff in the bottom) in a glass of water. Seems counterintuitive, but it works.
I want to thank everyone that's taken the time to help me it's greatly appreciated. I think that I might have arthritis as the knee on my other leg is very clicky and last night I noticed that what I thought was RLS in my left leg might actually be pain under the patella bone. I think that my brain has convinced me that it's RLS.
I have had the vile symptoms of RLS during September 2021 and it's something that I wouldn't wish upon my worst enemy. It's the worst feeling that I have ever had. It was torture.
The back of my thigh does feel weird but as I've already stated I think it's related to my knee. I'm getting it all the time not just in the evening. I will arrange a GP appointment and go from there.
You are so close to Cardiff and it seems there is a super doctor there who is an expert on RLS. Maybe someone from the group could advise u about his name
I started getting night sweats and extreme heat intolerance in November 2023.
In June of this year I started researching vitamin b12 deficiency.
To cut a long story short I requested yet another blood test and my ferritin levels were 7!!
My vitamin D is low.
My folate is low .
And I'm vitamin b12 deficient.
I had an intravenous iron infusion a month ago today. I will need to have one every three years. I will also need to inject vitamin b12 for the rest of my life.
I just don't know what the hell the various doctors that I have seen over the last three and a half years have been doing. But, I have been very ill.
It's still early days and I still feel terribly rough.
I've got a genetic condition that limits iron absorbtion. I've had it my whole life.
I really do despair with doctors. They are for the most part absolutely useless and make you feel like a hypochondriac.
Thanks to everyone that took the time to help me. You were far more help than my doctors.
My response may be a little late, but I weaned off of my DA medications back in 2018 and it wasn't until I reduced my omeprazole to 10 mg and began taking it in the morning instead of evening that I started to see great results. My restless leg is less often and not as extreme. Just wish I would have made that adjustment much sooner but I had so many other medication combinations to work with and adjust. Hope this might work for some others. . I only have one pill that I take at night now and that is carvedilol. All others are taken in the morning.
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