Here I am again with something for people to think about, do some research on, and go from there for themselves.
Ponder this - stress makes RLS worse. Those of us who have problems sleeping would do well to look up the 3 stages of stress - the Alarm Reaction, the Resistance Stage and finally the Exhaustion Stage. (This is well-documented from the model by Hans Selye.) I would bet that anyone who has continuous sleeping problems is in the Resistance stage, where cortisol is too high much of the day, and especially at night. BUT don't just read one description of Flight or Fight, read several, as some are more informative than others. Dr. James L. Wilson's book on 'Adrenal Fatigue on page 288 has a very good one.
Stress, especially those high cortisol levels in the resistance stage, makes RLS worse. Check out progressivehealth.com Stress and Restless Legs Syndrome.
Ponder that RLS makes stress worse, AND Stress makes RLS worse. Which came first, the chicken...etc? It becomes a vicious circle.
Check out pregnenolone - the grandmother hormone of the adrenal glands. Pregnenolone is the first hormone made in the Adrenal Cascade (made from cholesterol!) Other downstream hormones are made from pregnenolone -- whatever and as your body needs them. UNLESS you get caught out by "Pregnenolone Steal" where the pregnenolone is stolen to produce cortisol in (excess!) if your body/brain thinks you have a stressful situation -real or perceived - coming up. Cortisol can course thru your body in less than 1 minute when it is turned on. And if there are not enough of the downstream hormones to balance cortisol, then it continues.
So what hormones counteract cortisol? Pregnenolone and/or DHEA, especially. These are used in small quantities, by alternative doctors, for people who are suffering from adrenal problems (not recognized by mainstream medicine until they are at either end of the spectrum, either Addison's (can't make cortisol) or Cushing's (way too much cortisol.) But what about in between but still not normal? That's where alternative practices come in. One can look up various websites and get a lot of information that way, if one knows what to look for.
So, I suggest you do some of your own research on these ideas/ information/substances, etc. And look on Amazon, where there are people who have found these substances very helpful. Dhea is more controversial than pregnenolone, but do your own looking up and see what you come up with.
I'm throwing these ideas out for anyone who has not had relief and feels there are avenues not explored yet that might be helpful.
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lauraflora
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Interesting, and i know some people find stress can make their RLS worse, but for me....stress has no effects on my RLS. I wonder if i am alone on that one.
No, Elisse you are not alone. Stress makes no difference in my RLS either, and not in many of my members in my groups. So, I am with you on that one, and I commented on it below.
Not alone mine is bad with or without stress. Which for people like us makes it even harder to treat it. At least if it was stress related there's ways to get through that.
I love your posts lauraflora as there's always something to tweak my interest. I have a book on Adrenal fatigue which deals with a lot of the points you have touched upon.
I find stress makes my RLS worse ( & my MS) and now try to avoid stressful situations which is much easier in some ways because I am retired, not so easy in other ways because I have stroppy young adult children. (Stroppy means argumentative & difficult here in the UK.)
Keep posting as it's great to think about alternative/complementary ways to deal with this horrid disease.
I agree re stress. I believe getting our adrenals in shape is helpful on many levels. For me, I'm trying to stick with anti-inflammatory foods-no sugar etc.Unfortunately many doctors seem to dismiss my concern re this so we really are on our own. Would love to know what books are most informative. I know there are a lot of good books/information out there on adrenal problems but I usually look for recommendations from other patients. Can't buy them all. Thx. Also interested if anyone has been helped by supplements-which ones. I have had a small adrenal cyst for years. My doctors call it an 'incidentaloma" and say not to worry about it. But it doesn't make sense to have foreign tissue sitting around just being ignored. Has anyone else been through thid 'medical hiccup.'? No obvious symptoms but I don't like it being there. Many doctors don't even believe in adrenal fatigue. I do and believe adrenal problems are very underrecognized here in the US.
Ah, I did not realize you are in the US. I am also, in the Chicago area. Somehow I thought you were, as many others on this site,, in the UK. And you are a retired nurse, so you are very familiar with the medical system.
You are right that many mainstream doctors do not believe in adrenal fatigue. And for them to leave a cyst on your adrenal gland sounds like they do not acknowledge that it could be irritating and thus causing problems to the gland itself. I have read somewhere, online, about having something like that removed, so maybe you need a second opinion from a different doctor. I read that it can cause symptoms (overactive adrenals) such as one finds in Cushing's Disease.
Interesting. Stress, exhaustion and frustration makes my RLS much worse. Yesterday I was immobile with tiredness due to exertions over the previous two weeks but had a demanding four hour party to help with. It was wonderful but yesterday evening I was convulsed. It was at times like epilepsy without my brain brain being effected. Horrendous muscle spasms, frightening.
You might even look into the relationship between cortisol and glutamate and the use that magnesium may be in this respect that we were discussing yesterday.
If we consider that glutamate to be a sort of excitatory element of RLS while dopamine is a controlling element, then perhaps the more stress, anxiety, restlessness, ambition even, we're subject to, the more dopamine control we need.
Drinking coffee (known to increase cortisol) in the morning, four mugs of the full-caffeine ground bean stuff, seems to have no effect on my RLS though. I might even go so far as to say dopamine seems to like and approve of the little luxury, considers it a reward maybe.
Great post. I have arrived to the conclusion that stress is the main factor for my RLS. I wll lok to all possibilities you have provided. Thanks a lot.
Good write-up! One more thing to consider. DHEA declines dramatically with age, by age 65, less than 20% of a 30 year old. So supplementation is possible. Good article by Dr. Axe here... draxe.com/dhea/
Been there and researched that, but lots to think about. I know a lot of people say stress makes their RLS worse, and I believe them. it is not a thing that affects me. If stress made my RLS worse or caused it, I would not be here right now. As usual you do think things through thoroughly. The one thing I picked up on in this post, is high levels of cortisol, which also happens in pregnancy. And, we know that many women get worsened RLS when pregnant, or even get it for the first time when they get pregnant. Seems to me they should be able to nail something down about that, I have been told "no $$$$$$ for research for that". it is one of the biggest problems in some of my groups. We NEED more research into the pregnancy/hormone thing.
Stress doesn't affect me either but some people say it does x
For me I think stress makes it worse as I am more likely to focus on the RLS and likewise the RLS increases stress levels. Thanks for the info will check it out.
I guess that the interpretation (and perhaps that is my fault in how I phrased things) was STRESS, when in actuality I meant CORTISOL (Which is the hormone that is pumped out in excess during stress.) Pregnenolone and/or Dhea can turn off that high cortisol, if taken when it happens. Especially sublingual tablets. At least that is what I have read and experienced myself, using it when nothing else seems to be working - even things that worked before. Meaning, sometimes I get too out of sorts and then I need a stronger approach to getting back in sorts. I find if the stress response (cortisol) turns on in the middle of the night, 30 mg. of pregnenolone, under my tongue, turns it off in about 15 to 20 minutes.
At least, it works for me. Then after a few days or so, I taper it down. One thing I read that can contribute to high cortisol is using cortisol crème, as it is absorbed thru the skin and into the blood stream. What happened recently was that I got about 25 mosquito bites and put on cortisone cream for about 3 days. Then, my sleep got badly thrown off (tho it had been going well before.) Just something to think about.
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