Much time in bed, exhausted yet hyperkinetic... help plz

[misskatniss]

Hello everybody,

my question is if any of you folks is like me
- suffering from strong OI
- almost bedridden
- but suffering from restless legs in the night and the urge to turn the upper body back and forth in bed during the day, a bit like jactation...

I would be glad to share your experiences about it to discover
- causes
and maybe
- some help

Thank you everyone!!

PS: Neuroleptics made jactation an RLS worse, but I´m on no drugs currently. Melatonin seems to worsen it as well. Strangely, Tryptophane desn´t seemt o make it worse. No clue...

 

[Valentijn]

Do you take magnesium?

 

[DeGenesis]

I was diagnosed with a condition which is called akathisia. It sounds very similar, to my mind, to what you are suffering from. I have read that RLS is a form of "focal akathisia". You don't need to be on any medications to suffer from akathisia, but in my opinion most doctors only consider it in the context of an anti psychotic prescription. Have a read up and perhaps bring it up with a doctor. Choreographed upper body movements combined with RLS-type symptoms would lead me to self-diagnose akathisia, which I did, and found a doctor who understood how brutally uncomfortable it can be, and gave me formal treatment.

I'm no CFS/ME expert though, but I think CFS/ME is related in some way to akathisia/RLS. I believe I saw that in a blog article from Cort Johnson.

 

[DeGenesis]

When I was bedridden from POTS and light-headed in bed, I had so much SNS activity that I had tremors all over my body and intense akathisia. A bit of IV lorazepam and a LOT of IV saline and I felt like a completely different person.

 

[misskatniss]

@Valentijn Yes I do take magnesium! Why?
@DeGenesis Thank you for your suggestion, I am going to check that out!!

 

[Valentijn]

@Valentijn Yes I do take magnesium! Why?

It can help to prevent muscle spasms.

 

[taniaaust1]

If you have severe OI, you need OI treatment.

 

[misskatniss]

Where from and what would that be, @taniaaust1 ? My physician just said he didn´t know about how to treat it...
Thank you!

Thank you, too, @Valentijn ! Is normal magnesiumcitrate ok, and is it true that I need to take calcium as well because otherwise that goes down? thx

 

[Valentijn]

Is normal magnesiumcitrate ok, and is it true that I need to take calcium as well because otherwise that goes down? thx

Magnesium citrate or magnesium malate, etc, should be fine. Magnesium oxide and magnesium chelate should generally be avoided, as they cause diarrhea and don't get absorbed much at all.

Calcium needs magnesium, but magnesium doesn't need calcium. And calcium supplements usually only have a small-ish amount of magnesium. Hence it should be safe to take a larger dose of magnesium that what might come with the calcium.

My own dose was about 400mg per day, plus a diet that was pretty good with regards to minerals. Though in my case taking Yohimbe for my OI issues also largely resolved my muscle twitching issues, and I'm down to 150mg magnesium per day.

 

[DeGenesis]

Where from and what would that be, @taniaaust1 ? My physician just said he didn´t know about how to treat it...

Maybe you could go to the ER.

That's what I finally had to do to get treatment. I called an ambulance, got hooked up to a monitor in the ER, and demonstrated my vitals to the staff. They wanted to discharge me. After laying down for a while, I got up and just stood there. The alarm went crazy! "Extreme tachy", was what my monitor said (and at the nurses desk), and the alarm kept getting louder and louder until it was deafening. I was admitted. Just my personal experience.