Restless Leg Syndrome or Stim?

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I didn't know whether to post this here or in General Autism Discussion so if I have the wrong place then let me know.

Whether the specialists find me on the spectrum or not (waiting, waiting...), I know I stim with my legs when I'm not lying in bed. As a kid I'd bounce them so much I'd get told off and shouted at so I'd have to stop. Sitting in a chair I might move them left to right, fitted together. Other times, if it's the right kind of chair, I'll have my knees together and move them as if I were jumping. I think I moved them in high school but nobody noticed. Sometimes, when I get very anxious or extremely angry, I pace. Most of the time these are conscious but can start when I'm not paying attention.

Now to my question: How does one go about deciding whether a "lying in bed" leg movement is a stim or Restless Leg Syndrome? I've tried reading up on the latter and I can't work it out. I've asked elsewhere, on other forums, but I thought I'd see if Wrong Planet had any ideas.

Details:

• - I'd say that it tends to happen mostly or almost exclusively in my own bed, even if I'm staying over somewhere
• - It presents mostly as paddling of feet; one foot forward with other back, then change
• - If I've tried binding them but not tight enough, they will move together back and forth like a mermaid's tail
• - When I bind the ankles and soles, that tends to stop it; slightest tickle now and then in my legs but that's it
• - The reason I want it to stop is it makes it feel like my ankles will snap; it gets sore quick
• - The more stressed I am, the harder they paddle, and I grit my teeth without meaning to
• - Without binding I can stop it if I will it too but if my attention goes off too far or I get stressed, they start again
• - It happens any time of day
• - My legs don't feel like they want to move, only the feet
• - It doesn't feel so much as restless energy; when I can't stop it I'd say it feels like somebody else has control
• - I'm a wriggler at night in general, can never get comfy; don't know if that matters
• - Back to the binding for a second: it feels really pleasant when the sore ankles and the soles are bound tight
• - When the soles are bound, I'm less likely to do the mermaid movement
• - Though I tend to like not having to do it, if it feels like I "need" to, the binding can make me feel a little spaced out or nervous
• - It often starts without me realising
• - Sometimes it feels okay when it's slow
• - If I pull my knees up and have my soles on the bed when feet have been paddling, I wind up wiggling my toes a bit
• - Again, no real sensations in the leg except for the second time I bound the feet and there were some twitches here and there, couple at the knee, but nothing major
• - Currently I'm lying in bed a lot because of depression, more acute because of break up; my cat yowls a lot (may be going senile) and the neighbours arguing and loud noises range from uncomfortable to triggering for my C-PTSD; I'd say the paddling's been worse lately

I think that's all I've got for information. I used to think it was RLS but never looked fully into that. When I learned of the possibility of Aspergers and scored high in the Cambridge University tests, I started to wonder if it could be a much less controlled stim.

(random stim stuff you prob don't need) Only in the past few years have I got so ill from co morbid conditions that I just let myself do what felt natural, like rocking back and forth, though at the time there was a cruel part of my mind telling me if I didn't present as having issues then nobody would understand (subconscious direction to... communicate angst through stimming?) The rocking became uncontrollable for a while when extremely strained but now I can stop it generally if I need to and I do it a little if I feel like I might get bad. Started stroking things as I noticed I'd play with my clothes, let my hands wring in public if they needed to, didn't feel so embarrassed about the excited hand flap. I wouldn't say that I stim much, only more so now that life is harder. (/random)


So, how do I tell the difference? The NHS page for RLS didn't seem quite helpful because there is a desire to move the legs and sensations but I wouldn't say it is because it feels restless. It's like I have to.

Thanks for listening and sorry if this is the wrong place.

Hi OP

- We are not medical professionals so can't say with certainty but it could be restless leg syndrome by the sound of it. I can manage to control my stimming better these days and my arm flapping which was referred to as flying by my folks as a child, only happens when I am alone and looking at something that I've done that greatly satisfies me, and I also rock my lower legs a lot but it's controllable - it's just that it makes me feel good, as does the "flying".

Stress can certainly trigger worse stimming or nervous reaction. If it is causing you pain or discomfort while in bed then you will need to seek assistance from a medical professional who can maybe prescribe something so that it doesn't harm you. Alternatively you may want to look into ways to relax, such as meditation or whatever other activity may be effective to relax you.

In meetings I bounce my legs when I am thinking or something like that. If I become aware of it I can stop without physical discomfort.

When RLS strikes, my legs "hurt" in a hard-to-describe kind of way, and the discomfort only goes away while I move them. If I stop moving the hurt immediately resumes.

For me, there is no prior hurting. It happens and my ankles become sore and I force it to stop. After that the ankles ache but I still have this urge which maybe comes from the mind to move them again. I don't want to and the ankles/feet seem to be in pain from the movement and having lasting sensation of being pushed so hard, but sometimes it will start up again and it will be agony.

I guess in conclusion, moving them makes the pain so much worse.

I move my legs around when I'm sitting as a stim thing but I can stop if I care to. Sometimes at night thou when I'm trying to fall asleep my legs get very uncomfortable & I feel a strong urge to move them around alot. I can stop em from moving if I really put my mind to it but they feel like they're falling asleep & need to be moved. I assume that's RLS

i have mild restless leg syndrome. the best i can describe it is an internal itch or "nervousness" in the leg muscles that feels better when i move.

Restless legs syndrome (RLS) is a neurological disorder characterized by throbbing, pulling, creeping, or other unpleasant sensations.


Have you consult an expert?



westsidepodiatry.ca

I also move my legs to stop annoying pain. It may have something to do with muscle tension and maybe related to why kids walk on their toes. The binding maybe a pressure thing like Temple Grandins cattle press that calmed her. You can get weighted blankets/doonas that may help. I'm certainly looking forward to getting one because i know how great the difference is when I have 3 doonas on.

nick007: Your description sounds like RLS to me because it is easy to compare to what is said about it on medical sites.

cathylynn: If I'm stopping them from moving I might get itchiness but it doesn't make me feel relieved when they move aside from the fact that I currently spend too much time lying down so they get a stretch. However, it's not the legs that move. Just ankles making the paddling motion. No itchiness or tingling down there and my legs don't move and I generally simply ignore the sensation in them and it goes away.

Xandra: No throbbing, pulling, or creeping. Only part I can think of is the occasional "internal itching" like cathylynn mentioned, except for me it's probably a "pins and needles" type idea. It doesn't go down to the ankles and in fact remains around my thighs and sometimes knees.

Not talked to the doctor as it never used to be as troublesome as this. However, tough year has everything acting up.

Sean8573: Is the pain in your legs? Again, that sounds like the classic explanation I've read on medical sites. Or do you mean that when you hurt elsewhere you move them to take your mind off it?

Why do kids walk on their toes? When I was younger I did it because it was fun.

Who is Temple Grandin?

I used to use 3 duvets but it just got too warm. I really would like a weighted blanket. There are quite a few other items on the shopping list though and I'm on disability benefits. Still, should start looking them up anyway to see if I can find a deal. I love heaviness when it comes to duvets and I hate thin pillows.

Everybody: There is no pain before; the pain comes after the feet have been paddling. The muscles and the like ache from the movement. It can be so bad they feel like they'll be a permanent throbbing bruise and I almost want to cut them off so they won't do it any more. As I said earlier, if my strength is not focused elsewhere or drained, I can stop them. Like now. Though I'm pretty exhausted so I must have more power today than I thought.

Hi, I have just been diagnosed as having severe restless legs by a sleep specialist. I have also started using Sifrol, a Parkinson's medication to treat the RLS which has finally allowed me to fall asleep before 3 am (and stay asleep). The RLS runs in my family and my understanding, as well as personal experience, is that it can affect other limbs as well. I have experienced it for my entire life and it has been exacerbated in recent years by a developing condition of sleep apnoea and an iron deficiency. It was also horrendous during my last pregnancy. My son has recently been diagnosed as HFA
and I suspect other family members (including myself) are on the spectrum. Some members who appear to be in the spectrum have RLS, others do not. I have also been a massive bouncer, tapper, twitcher, joint cracker of my legs, ankles, feet and sometimes wrists. I have only recently started to think this might be stimming. I will do it nearly all of the time unless I am totally engrossed in something. With the exception of the joint cracking, it nearly always starts subconsciously. I also prefer the feeling to being still. Unlike the restless limb movement, I can stop the stimming-like behaviour without going completely mad. One final thing: Even having just taken the sifrol, while lying in bed reading a book, I do not have the urgent feeling to move my legs due to RLS. However, I like the feeling so much that I still bounce/rub/dance my feet until I fall asleep. Hope this share helps

For it to be Restless Legs, you should have unpleasant feelings in your legs as well as a desire/urge to move them. The sensations could be itching, creeping, crawling, anything unpleasant or could be pain. The movement of the legs happens more during the evening/night and periods of rest, sitting/lying down, it is a voluntary movement you can make yourself stop it, but you just feel the urge to.

I have had it since I was 4 years old, I have it severe and it causes horrible pain, sometimes don't sleep 2 nights in a row, fully awake listening to the birds chirp while crying because you are in so much pain.
Used to take pain killers now take Parkinson's medication.

If it's mild-moderate, feel fortunate you don't have my experience, just make lifestyle changes, no alcohol no caffeine no smoking, iron and magnesium, heat packs, walking etc.

If it's severe take Parkinson's medication, it has saved my life because I now have hope to live pain free and I was about to give up on living.

I was researching supplements to treat it danitargaryen, & I came across afew things that mentioned vitamin E supplements. You may have to take fish-oil too. You need to take fish oil to get some of the benefits from vitamin E but I take fish-oil anyways so I didn't pay attention to if RLS required it too or not. I've been taking one for afew months now & I only had one episode of RLS & that wasn't that long after I started it. My episodes of RLS were only occasional so it could be a pleasant coincidence but I don't plan to stop taking vitamin E to find out. I get my vitamin E supplement off Amazon & it's Source Naturals Mixed Tocopherols(I think the mixed are better). I could take it 2wice a day but I only take it 1ce a day cuz I get some vitamin E from my multi-vitamin & my cereal. Too much of it is a bad thing but I probably would be safe taking it 2wice a day. If the RLS starts coming back I may increase it to 2wice a day but I see no reason to increase it to 2wice a day sense it seems to be working rite now. The one side-effect I've noticed is that it makes my pee smell worse.

nick007, thanks for the tip I haven't used vitamin E before! I use fish oil too for osteoarthritis and inflammation
Dopamine agonists are working very well for me too, they treat movement disorders and dopamine in a natural occurring hormone in your brain anyway, if it ever comes back give them a go

I've got restless legs and I find that taking a couple of magnesium oxide tablets every day helps.