Discussion in 'Phoenix Rising Articles' started by Firestormm, Nov 21, 2013.
My daughter is 23, started when she was 15 (slow onset). She has OI, ME, hashi's.
Thanks Andrew. So informative.
Hi–here are some more bits and pieces....
@concepcion – I am pretty sure that none of those participating in this study could have been bed/house bound, since they would have had TT testing to be admitted into the study. If that is unfortunately your case, I can only advise extreme caution, and beginning with very very short attempts to see how it goes. Don’t take any risks–a faint can do real damage!
Is OH a symptom, or result of too much lying down? I think probably both–mine hit fast before I had started much lying down, but became a major symptom. I describe it as OI rather than OH, because I find it difficult to take my BP while standing up, though it is usually a bit low when I take it immediately after one of my "back against the wall" sessions.
There is a fascinating little book by Joan Vernikos, former director of NASA’s rehab program for returning astronauts–"Sitting Kills, Moving Heals."
As you may know, returning astronauts have all kinds of symptoms, and most will sound very familiar to you; here are phrases from her book in which she lists "How the Body Changes in Space": "blood volume reduced"; "heart shrinks, cardiac output decreased"; "red blood cells reduced"; "stamina/aerobic capacity decreased"; "body temperature regulation disturbed"; "muscle atrophy"; "biological rhythms disturbed"; "sleep disturbed; sleep not restorative"; "bone mass and density decreased"; "immune system depressed"; "flare ups of dormant viral infections"; and so on.
And here are some items under "Symptoms after Returning from Space": "spine compressed; back pain"; "standing can lead to fainting"; "blood pressure regulation disturbed"; "decreased cardiac output and stroke volume of the heart"; "muscles no longer support the spine"; "balance disturbed; unsteadiness"; "wide stance (‘duck walking’); shorter steps"; "walking and coordination problems".
So if you sometimes feel as if you are, or have been, living on the moon, you are not far wrong. Remember, however, that she was dealing with very healthy people suffering temporary and reversible dysfunctions–though some, like bone density, took a long while to recover fully.
I think we are caught in a real bind: our basic dysfunctions promote OI, and avoiding OI by sitting/ lying promotes OI.
Vernikos also pointed me to some interesting recent work. Here is Marc Hamilton (Hamilton MT, "Too little exercise and too much sitting: inactivity physiology and the need for new recommendations on sedentary behaviour," PMID: 22905272):
"There is now a need for studies to differentiate between the potentially unique molecular, physiologic, and clinical effects of too much sitting (inactivity physiology) separate from the responses caused by structured exercise (exercise physiology).
In theory, this may be in part because nonexercise activity thermogenesis (heat production) is a much greater component of total energy expenditure than exercise or because any type of brief, yet frequent, muscular contraction throughout the day may be necessary to short-circuit unhealthy molecular signals causing metabolic diseases."
A short translation? You may do better by increasing your general activity level and reducing your intentionally "exercise" activity, if the latter leads to reduced overall activity and increased sitting and lying.
The distinction between stabilizer and mobilizer muscles comes into play here too. Normal daytime activities, like preparing food, rising to walk over to the phone, putting out the garbage, food shopping, all use those stabilizing muscles, and help prevent the damage that accrues during long-term (hours, days) inactivity–as do yoga, Qu-Jong, Pilates, and other activities.
"Exercise" may employ only certain key mobilizing muscles, and that will not undo the damage accruing during the long nonexercising hours of your day if you sit and lie down too much. So it may be wise to move often, if only a little, and make varied movements, rather than spend all one’s day’s ration of energy in one long (for us folk) session of repetitive energy expenditure involving only some key mobilizers.
I think that "back against the wall" thing exercises some key stabilizer muscles–my legs seem to be filling out a bit–and that is a good thing for many reasons, not least being that it improves venous return, which improves OI.
On the issue that Sing raises–that all this must be doing damage. Yes, I am sure it does–lying and sitting for long periods damage muscles, particularly stabilizers, but also gravity sensors, autonomic nervous system control over our blood pressure and heart rate , and all that other autonomic stuff, but there is evidence from some sources that much of the damage is reversible.
I have now heard three local and credible stories of recovery from ME; two involved heavy use of a juicer --there is now some evidence that autoimmunity is at least involved in our disease, and the DVD "Fat, Sick and nearly Dead" shows two very fat guys both suffering from an unpleasant autoimmune disease who cured themselves by going on a 90 day juice fast under the direction of Dr. Joel Fuhrman, whose book "Eat to Live" records that he has had success with autoimmune diseases.
Recall also the story of Dr. Terry Wahls, with that TED talk and her near recovery from MS–not ME, but in the ball park?
The third case is about a young man, now 20, who got ME when about 13, and who recovered when he and his mother moved to Costa Rica for about 6 months. They are now back in Victoria, BC, and I have met them, and find their story totally credible. Why and how this happened is still a mystery, but it happened, I am sure.
The Rituximab story also suggests that most or much of the damage is reversible–so don’t give up hope! At least I continue to hope, though while we are exchanging ages I am now 80, but was only hit at around 74.
@Chris I hope you don't mind but I edited your post to add some spacing, as I was struggling to read it
Very interesting about the exercise and stabilisers
@Firestormm--fine by me, and thanks--I keep forgetting this--having trouble reading long paragraphs is not one of my problems, so I do forget--sorry! Sushi had written to me about this. Will try to remember--but no guarantees!
Fidgeting may be a good way to tone muscles. I just tried to find some evidence, as it seems intuitively true to me, but most hits were about weight loss, and the evidence for exercise helping with weight loss isn't great. But if you follow the 'use it or lose it' philosophy it seems obvious that frequent, small activities will help muscle tone, blood flow, etc. In our case we have to avoid too much movement if anything is hurting though.
There is lots of discussion about autoimmunity and ME on this site, and about dietary ways to combat it. My own favoured method is through the leaky-gut diet, and there is a whole section about this.
What is "leaky-gut"? It does not seem to have a consistent definition. It does seem to be an area that medicine is aware of, but has not yet developed a set of procedures an average MD can use to rule it (whatever exactly it is) in or out, nor is there a clear set of rules to treat it.
Did I miss something, or is there actually a way to
i) Define what leaky gut is
ii) determine whether one has it, and if so measure how much. This is important because...
if one tries a way of treating it, one wants to know if the treatment did what it was believed to do. With ME, we feel better, worse, better, much worse very often. Without a way to measure whether your gut leaks more or less than before, one doesn't know if the treatment fixed it.
Of course, I'll take anything that improves my health, even if it targets problem A but really improves D, F, and some of W without my knowing it. But isn't enough to develop a reliable method that works for most of us, it was just a lucky hit.
Best to direct you to the leaky-gut section of this site to avoid going too off-topic, but in brief it means that the gut wall is compromised and allows substances into the bloodstream that cannot normally enter. This is believed to be a cause of autoimmunity.
I think the standard test for it involves mannitol and lactulose IIRC.
Treatments have been found to be effective by e.g. Maes and others, not only for leaky gut but also for ME and other autoimmune conditions.
Hi--Conception and any others actually considering trying the "back against the wall" "home orthostatic training " thing that I am still using--I have finally unearthed my copy of the complete text, which had gone awol (if you could see my apt you would understand) for a while, and give here the exact instructions ("inability to stand for up to 40mins due to muscular or neurological disorders" was an exclusionary factor--might have excluded me!).
Subjects were "asked to stand with their upper backs against a wall and their heels approximately 15cms from the wall with a cushioned 'drop zone'. They were asked to maintain this position without movement for up to 40 min or until they experienced symptoms."
The "without movement " is important; the control goup was instructed to stand for only 10mins, and were "taught to perform gentle flexion and extension exercises...to enhance believability, counter venous pooling and prevent any possible orthostatic training effect."
In other words, if you are part of the HOT group, you are asked deliberately to restrain all those small internal willed (not autonomic) acts we learn to perform in order to make standing more tolerable for ourselves. You are saying to your ANS, "over to you--get on with it by yourself."
I still swear it is improving my state, but you will have to decide whether to give it a try for yourselves.
That's interesting. I don't seem to have significant OI, but since getting ME I have (always?) found walking easier than standing, and gradually found that moving my legs when standing made it better, although still difficult. I've never thought of it as related to blood flow - more a muscular problem, but maybe this is an issue with me too. I hate having to wait in queues due to this problem!
Do you have any particulars, Chris? I'm planning to embark on that journey, but I'm hoping not to lose weight.
@Ember; if you juice much of your food, you probably will loose weight, and miss out on a lot of fibre too. These days I eat much of my veg raw, and use a small but fast blender too; my juicer feels a little abandoned.
I will just repeat the two references I gave above somewhere, to Joel Fuhrman's "Eat to Live" and also, maybe, his "Fasting and Eating for Life", which I have not read. And take a look at Terry Wahls--she has a TED talk on YouTube that gives you a lot in 17 mins or so. The keys are lots of dark greens--kale, chard, etc., and lots of bright colours--tomatoes, peppers, berries, that kind of thing. They split on other things--Fuhrman is pretty much vegan, while Wahls is Paleo--grass-fed animal protein, etc. I lean towards the Fuhrman angle on this, since I also have some documented coronary artery stuff to contend with. There is huge ongoing controversy on all this, with no clear winner in sight at the moment as far as I am concerned.
Fuhrman's big thing is "nutritional density," and dark greens rate high on this, as do berries. I think we all have to weave our own way around all the competing claims here, in the light of our individual bodies, tastes, tolerances, and aims. So I would rather head you off in several directions that have some fundamental relationship to each other--all exclude junk stuff of course--and leave you to choose the path that feels right for you.
The "FastDiet" thing is another take on this--intermittent fasting--that has some research behind it, but Mosley's book is too animal protein directed for me to be comfortable with it. But there is a good idea there too, if you have the discipline. I have reduced and delayed my breakfast in accord with his principles, however. Like you, I have no desire at all to lose weight, so have to be careful.
And choose your targets--mine are mitos, autoimmunity and coronary arterial health. Yours may be different. Gut health too-- I like good raw sauerkraut and kimchi.
One more piece of advice--if you take lots and lots of chard, kale, broccoli, etc., watch your Thyroid Stimulating Hormone levels--mine went up somewhat, causing me to back off a bit, and also add a drop of iodine on a daily basis.
Good luck! Chris
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