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I was wondering if there was a connection

Posted: Mon Sep 13, 2010 12:17 pm
by sugbrendas
between high cortisol levels and RLS..
I'm wondering because anymore I have to be totally sleep deprived for days then wham I pass out for several hours and then back to the same ol same ol.
AND there is a guarentee that I won't sleep at night if I don't doze off for a little while during the day. The longer I'm awake the harder it is to sleep.
anyone else experience this?


Posted: Mon Sep 13, 2010 4:40 pm
by Polar Bear
I've not heard of any connection between high cortisol levels and rls.

However I understand there can be a connection between high cortisol levels and lack of sleep. At present I am on steroid mediction and sleep is practically non existent. Totally energised, a case of exhausted but not sleepy. No sleep, even tho rls symptoms are fully medicated and settled. And yes, I have gone for perhaps 48 hours, then had maybe 2 hours sleep, and so it starts again.

My high cortisol level is because of steroid medication.

I was told by doc that steroid would not affect my rls, which I assume in turn would mean that high cortisol level would not affect rls.
Any other connection with rls I haven't heard of.

Do you have a high cortisol level? Have you had it checked.

Posted: Mon Sep 13, 2010 8:35 pm
by sugbrendas
Thanks for responding,

Before I switched my insurance back to Kaiser I was having my primary care done at Hopkins.My Dr said he thought getting my level checked might be something to consider in the future. This was after a year of not enuf sleep.
He said the test was expensive,I don't know anything about that but Hopkins bills are outragous b/c they add and add and add.

I think it just makes sense to ask about it.

Back in the 70's when sleep became a real problem for me,my primary mentioned that he thought my adrenaline gland was so over worked and thats why I couldn't sleep. Long before RLS came to be known.

I'm going to inquire about it when the research people call me again.


Posted: Tue Sep 14, 2010 2:46 am
by becat
Hey Sug glad to see you around.
So sorry to hear that it has gotten worse.

I have thought for a long time that (I have pain, as well) sees any kind of rise in my system as stress. Whether it means I'm happy and looking forward to something or really ill or upset. It's all stress. Or seems to be for my body.
Be that a migraine or the RLS kicks into overdrive, when you never thought things could get worse. I understand.
I looked it up, you might have a thought about cortisol.
Here is what I found:

And yes, I can stay awake and unhuman for days. No sleep or just snatches, for no apparent reason.
It seems to me that if I have been up for 24+ hours, bedtime should just be a knock out. Not so for me for almost 2 yrs now. Pain gets worse and I don't handle that any better without sleep. Then the sleep gets out of control. I use to have cycles of this, now it seems to be a step closer to just my life.
This way of life is not easy for sure. I hope and pray that they will find answers for us all. I wish someone would use me as the tester, some days. :)
Prays and hopes to fill the moon. Know that many can row for us, as we would for them.
I hope your doc does right and good by you.

Posted: Tue Sep 14, 2010 3:29 am
by badnights
The more tired I get, the more the RLS goes nuts.

Posted: Tue Sep 14, 2010 7:08 am
by sugbrendas
You guys,I feel as bad for you as I do for myself.
I have alot of pain now.

Seems this last bout (2 1/2 years) everything has changed.

Used to have a really hard time falling asleep but once I went into REM I slept good. I didn't have pain.

Now I fall asleep very quicky. But not for long.

Now I can actually see my veins rolling/throbbing. It's like my legs are so overworked.

Even when I do sleep,getting in the right position is a must. I can't have one leg touching the other at all. I use a large pillow between my legs.
If even a part of my foot touches the other leg I cringe.

Man,I wouldn't wish this on anyone.


Posted: Tue Sep 14, 2010 10:58 am
by badnights
that sounds horrible Brenda.

right now I just can't sleep, so I'm doing ok. i.e I'm not being tortured. I was sleeping so well lately (relatively speaking). It always changes, doesn't it? Sleep pattern is never the same.

Posted: Wed Sep 15, 2010 8:17 am
by sugbrendas
Good links guys,

So I think we can all say our cortisone levels are probably high when we don't sleep but I was wondering, what came 1st like the chicken or the egg. Is the over production of the stress hormone a cause of augmentation or is it just that it rises when we don't sleep..


Posted: Wed Sep 15, 2010 10:04 am
by ViewsAskew
I don't think augmentation itself is a cause. It's just the additional lack of sleep resulting from the augmentation.

That said, I know that I was extra anxious when I had augmented. No question, my brain chemistry and hormone levels were probably extremely wacky. If I think about it, though, I always get extra anxious when I have extremely crazy RLS, so am thinking it's not related to augmentation, but to the RLS itself and the brain chemical/hormone imbalance caused by the RLS.

All the things I've read seem to indicate it's related to anytime we don't sleep well, regardless of cause.

Here are a few more links: ... auses.html ... 70/18/1620 ... 6/abstract

Now, I'm very tired as I haven't slept yet and it's 5 AM, but as I read these, some appear to be contradictory. One says that cortisol is very high in RLS patients when RLS is at its worst. Another says that cortisol is low at the early onset of RLS and that giving cortisol helps stop it. Yet another says that there are no differences in hormones in people with RLS compared to people without it.


Posted: Wed Sep 15, 2010 8:47 pm
by Betty/WV
Yes, Brenda, the longer I am awake, the more tired I am, the more stressed I am---the harder it is for me to go to sleep. Of course I hardly sleep no matter what, but I do think if I am more rested the better it is.

Wish you peaceful sleep.


Posted: Thu Sep 16, 2010 9:30 am
by sugbrendas
thank you guys,

great links!

So there is evidence that corisol may play a important role with us.

I'm not gonna wait,i'm going to e-mail Michele from the Hopkins study.