I suspect I may have RLS. I meet all the criteria re: urge to move, worse at bedtime, etc.
But I can’t say I have “creepy-crawly” or “fizzy” sensations. For me it’s like I can feel this tension building up in a muscle and I need to stretch or twitch to relieve the feeling. I also get a lot of involuntary twitches.
Does this sound like RLS? Another possible diagnosis is sleep myoclonus.
My father may have had RLS. I have been diagnosed with PLMD (untreated) and sleep apnea (use CPAP).
Hi, I can't say what you have but I can share my experience if it helps.
I too have PLMD. As wellas l imb movements while asleep, I also have movements while i'm awake (generally worse in evening or at rest).
I've never been able to fully establish whether this is RLS or Periodic Limb Movements, however i suspect they are periodic limb movements.
The main reason i think this is because the movements are involuntary. It's like a spasm or mild shock going down the length of my leg.
This doesn't appear to meet the RLS criteria of "urge to move". Because i don't have an urge to move, the movement just happens.
It's complicated slightly by the fact that there are certain food triggers that worsen the movement; and things that help people with RLS, also help me. Eg. walking at night when i have these movements.
So all in all, after more than ten years of reading about both conditions i still can't say with any real certainty what the movements are.
Has it been suggested that you may have sleep myoclonus?
it’s not been suggested, just something I found via google that sounds like a possibility.
I’ve started on eliminating sugar and alcohol, restricting caffeine and gluten and keeping a log. I already take ferrous sulfate every other day so I also want to track if I do better on my iron days. Seeing my GP next week and will ask about an iron panel.
From what I’ve read about the drugs for this it would have to get MUCH worse before I would consider medication.
I would definitely say its rls as it sounds exactly like mine. Luckily mine is under control now though but it took a few years to get the right medication. I'm taking gabapentin daily
i am also taking gabapentin for this
It sounds like RLS to me. In any case you said you have PLMD and that is treated the same way as RLS. Tracking whether you feel better on your iron days is not going to tell you anything as that is not the way iron helps you. And you should have your ferritin tested before you take iron. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. 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%. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.
The ferrous sulfate was prescribed by a haematologist after testing, however, that was 3 years ago, and although my ferritin was over 100 at that time, it is now below 80 even though I take iron every other day. I'm seeing my GP next week so I'll suggest to him then that I do a new panel.
I take that back. The <100 numbers I was looking at were from 2019, before I started supplementing. By 2020 my level was high (204). Most recent (April 2022) it was exactly 100.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, 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, 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, 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, using a standing desk, listening to music and yoga.
That's a good list for me to explore! Just began on eliminating alcohol and sugar and restricting caffeine and gluten. Nicotine is not an issue. I already supplement magnesium (not sure if it's glycinate) and D3 and get B12 shots because I have pernicious anaemia. I eat a pretty good anti-inflammatory diet already; ditching the alcohol and sugar should complete that picture. I walk 11K steps per day on average; I have had worse RLS on some days when I've exceeded 18K steps so the vigorous exercise may be a trigger for me. Had a hot bath the other night and it was a terrible night (although I think the chocolate cookies were the more likely culprit -- that was the night that pushed me to eliminate sugar). Weighted blankets are on sale at Jysk later this week so I plan on buying one to try. I used low-dose melatonin for years to help with insomnia and gave up when it was clear it was not helping, but my RLS/PLMD has gotten worse since stopping it (although I don't think there's a correlation). I massage my feet and calves before bed; makes no difference. I'm post-menopausal and was on aromatase inhibitors for 8 years (breast cancer treatment that inhibits estrogen production) so I don't think estrogen is an issue. I am very conscientious about staying hydrated. I'm skeptical about topical magnesium because magnesium cannot be absorbed transdermally; that said, I do like a soak with lavender epsom salts. I'm retired so no longer spending hours at a desk every day. I do occasional yoga and meditation but am not very consistent in them.
So that leaves compression socks, elastic bandages, low oxalate diet (have to google that), selenium, potassium, copper, other B vitamins, massage gun, and the hot/cold shower thing. I've become interested in cold water immersion because of its anti-inflammatory reputation but haven't quite worked up the nerve for it. I live near the beach now on the south coast of Ireland, though, and there are people who swim there year round, so maybe I'll find a cohort and brave the cold waters! 🥶
Thanks for this exhaustive list!
It sounds like RLS. With sleep myoclonus, there is no buildup of tension. It's a sudden involuntary jerk, either of a limb or the entire body; a neurological explosion with a specific point of emanation, such as core muscles or leg muscles. It doesn't feel like a muscle spasm and there's no urge to move. Involuntary twitches can be part of RLS, but they feel different. I have both myoclonus and RLS, and it sounds like you're describing RLS.
Periodic limb movement disorder (PLMD) is a condition that was formerly called sleep myoclonus or nocturnal myoclonus. It is described as repetitive limb movements that occur during sleep and cause sleep disruption.
80-90% of people w RLS also have PLMD. The opposite is rather rare. Your symptoms sounds like RLS to me. Although I too have both PLMD and RLS, I am not a doctor. But the symptoms you describe are quite familiar to me. I was diagnosed and it is disruptive to my life and every day is a battle.
Whether you get treatment or not is really something only you can answer. Is it disruptive enough that you can use some help?
But in all honesty all drugs that treat it are nasty and you must consider the side effects over the benefit. Supplements are a good start. Especially iron and magnesium. Ideally avoid taking drugs if you can !
Dealing with it is nasty but there are a lot worse conditions out there and do stay upbeat and thankful!
Best wishes …
Sounds very much like RLS if you hit all the main criteria. A lot of people (including me) don’t have the creepy crawly feelings. I have recently benefitted from a reduction in food in general and carbs and alcohol in particular as well as not eating late in the evening. My RLS is still there but it’s less intense and even though I get up 2 or 3 times a night it can be quite quick to go back to sleep.
It sounds like RLS to me, as I have the same symptoms when it comes on. I take magnesium glycinate capsules before bedtime which helps prevent the RLS. Also, I take a probiotic for gut health and try to avoid caffeine or sugar after noon each day. Another thing I use is the Melt Method to massage my feet. This really helps stop an incident. meltmethod.com.
Hope this helps
RLS and No Sleep
RLS, PLMS or Rem Sleep Disorder
THEY THINK ITS RLS/I CANT SLEEP
Just started Medical Cannabis for RLS and Sleep
Less symptoms but still RLS sleep issues
