Strange symptoms

[KickininAz]

I don't post very often but just wanted to take a minute to thank this group for the insightful posts I read here. I have had RLS forever, or it seems like forever. I think I had it as a child, I remember trying to explain to my doctor that I had a strange feeling in the muscles of my legs (I didn't know how to explain it). As a child I was a head banger..I literally banged my head against the pillow in order to sleep. This sounds weird but I was having RLS as I sat on the sofa watching TV. I started to move my head up and down, chin to chest and back again. The weird thing is that the feelings of RLS disappeared while I was moving my head up and down. Problem is I can't do that all night long, but it is strange that the head movement stopped the terrible RLS. In my case, it is always in the backs of my thighs. If I do not move my legs, force myself to stay still, I will suddenly have a sort of seizure (probably the wrong term but I don't know what to call it) where my entire body will convulse...arms shoot up, legs shoot up, head shoots up into the air. Does anyone else experience this? I feel like I am the only one who has such strange symptoms with RLS.

Cathy in Arizona

[Hidden]

I have tried before to force myself to not move when i feel the RLS coming and i get a weird feeling in my head, which i am sure is my brain forcing the RLS through, my legs go nuts and i cant but not move them, i didnt like that weird feeling in my head.

[Hidden in reply to Hidden]

I've had brain MRIs for that funny feeling in my head. If it's really bad I'll get a 5 day steroid pack. Otherwise I drink lots of anti inflammatory tea, avoid coffee and sugar

[Joolsg]

Hi Cathy,

I can relate to the whole body jerk/spasm if I force myself not to move. It also wakes me in the middle of the night several times a week ( because deep sleep stops me moving).

I know it is not PLMD or Hypnic jerks. So yes, I know what you are talking about.

[KickininAz in reply to Joolsg]

So what is it called? Do you know if the jerk/spasm/seizure thing has a name or diagnosis? Maybe if I could give my doctor a name he would better understand.

Thanks. At least I'm not alone having this symptom. I felt like I was the only one.

Cathy

[Joolsg in reply to KickininAz]

It is not called anything- it’s just full blown severe RLS and the only way of stopping it is to move, walk, jiggle legs. The minute you stop moving the jerks start again. Writing this as my legs are jerking because I’m watching Love Island lying on the sofa and don’t want to walk about and the OxyContin hasn’t fully kicked in yet. BTW Love Island is a trashy reality TV show here in the UK - I blame my kids for getting me hooked.

[KickininAz in reply to Joolsg]

LOL....I am hooked on a very trashy US reality show called 90 Day Fiance and it's various spin-offs like 90 Days, Happily Ever After. I also lay on the sofa and jiggle my legs so I can watch it without getting up to walk around.

[involuntarydancer in reply to Joolsg]

What are you saying Jools? Love Island affords a genuine, near scientific, insight into the mating rituals and behaviour of young adults in a contained environment. Surely when you say 'trashy reality TV' you mean 'non-fictional television at its most enlightening'?

[Joolsg in reply to involuntarydancer]

You are of course correct ID. Particularly the most recent episodes where the wholesome Curtis has had his head turned 560 degrees. It is what it is!

[hausbauer]

I do also know what you are talking about. When I feel it coming - the creepy feeling - and force myself to sit still , I have something like a spasm, jerking legs and arms.

[KickininAz in reply to hausbauer]

Thanks. Knowing that I'm not the only person who has this symptom is helpful. A few weeks ago I was playing a game at the kitchen table with my daughter and her husband. I felt the creeping feeling starting in my legs and tried very hard not to squirm and wiggle. But then suddenly my arms and legs and head all just gave a mighty jerk anyway which was embarrassing. My son-in-law was pretty surprised!!!

[lynnmcguire24]

I use Dr Teal's moisturizing bath & body oil for my RLS. I really love it. It has lavender essential w/jojoba oil, sweet almond oil, & aloe vera. The most important ingredient in it is Epsom Salt. This oil goes on nice & doesn't stay oily. As you already know, Epsom Salt is already good for RLS, so the lavender oil is good for relaxation & sleep. It's a win-win. You can use it in the shower or just rub it right on your body at night or whenever your RLS bothers you.

[KickininAz]

Thank you for sharing about the body oil. I will look for it. I've also been wondering if CBD oil would help, as it available right down the street from me.

[involuntarydancer in reply to KickininAz]

CBD oil works for enough people for it to be well worth a try.