Discussion in 'Other Symptoms' started by JaimeS, Nov 10, 2018.
Man, biology sucks.
I can tell exactly the same about myself. I'm completely screwed without D.
Increased melatonin is probably why I experience such negative effects from being inside or even being outside on an overcast day. I have written about it here.
Most of you probably know this, but daylight suppresses melatonin production.
Also, supplemental melatonin makes my digestion and all of the symptoms so incredibly bad that I can hardly swallow anything due to dysphagia, plus I become extremely cold intolerant and get these terrible infection like symptoms from any carbs. Sometimes to the point of shaking...
Interesting, because I'm the opposite. I mean everyone probably feels better on sunny days mentally, but for me it helps physically a lot. And I don't think it has to do with mind-body woodoo, because the sunny day benefits last for a few days even if I'm home and the weather is poor.
Saaaame. I just avoid 'em at this point.
I get on better when it’s cooler. This seems to be related to how easily my heart rate exceeds my limits. Generally I try and limit elevated heart rate (80-100 bpm for me) to less than an hour a day (I’m mild/moderate). What I’ve noticed is that when it’s hotter, it’s more difficult to keep heart rate down and even pottering/walking slowly can increase this so I blow my hours allowance really quickly. When it’s cooler I can do a lot more.
The other thing I have noticed for me are high histamine-type symptoms coinciding with other M.E. symptoms (PEM, GI symptoms) despite taking an antihistamine daily. This is at its worse in the summer due to pollen etc. In the winter there’s obviously less to deal with, so the hives etc subside in frequency and I feel better with my ME generally. My last PEM episode was nearly 6 weeks ago which is a record for me (normally every 3 weeks).
Of course all this could be completely wiped out by whatever the latest bug is that the kids at school are having (my son kindly brings these home with him for me to try). Fingers crossed no noravirus this year.
I agree. Allergens are probably also an important piece of the puzzle. My eyes start to itch and I sneeze a lot from beginning of August to sometime in September and then there's this brief peried when it's still quite bright outside and I can go out and spend some time to get the benefits, but it's also not hot anymore and I think that's a perfect combimation for me.
Whelp, I looked at my summer vs winter bloodwork since onset ladies and gents, and it's significant.
The percent difference between my WBCs in the summer vs winter of the same year is >20%.
That's a 1/5 drop in an important marker of immune function in someone who is already on-paper immunocompromised.
So, I'm gonna give it a go.
I normally take lactoferrin in the evening because it enhances NKC function. I later learned it also enhances monocyte function. I'm going to take it in the morning as well as evening now.
I found that papaya leaf increases platelet count. I know some of us have issues with any/all natural products, but I don't honestly care where the chemicals come from if they do their job; and there are a dozen studies in humans showing its effectiveness, and enough showing low/no toxicity that I'm willing to drink some tea for two months.
CITIZEN SCIENCE FTW
This thread has driven me back to the texts to see what is said about the phenomenon. It is rather curious. It looks as though Wessely does address half of the subject of relapse and remission, but unfortunately it is the other half. Relapse is considered, but only, so far as I can see, in relation to why GET should not cause it. I have not found discussion of the concomitant remission or its causes.
There does seem to be an understanding of the difficulties.
"It is difficult to be certain what relapse means in PVFS...… Finally we anticipate that future research will uncover many as yet unsuspected mechanisms associated with relapse. Time alone will also tell if the programme outlined above offers prophylaxis against developing the extremes of disability that we, and others, currently encounter."
Cognitive behavioural management of PVFS. Wessely et al in Post-viral fatigue syndrome (ME) 1991 eds Mowbray/Jenkins. @p328
It is very difficult to square these early comments with later developments, and the certainties which became accepted.
It does seem strange that there is no expression of interest in the concomitant question of remission and its strange occurrences, which can bear no relation to any possible deconditioning.
Over the 7 years I have been sick, November has been the best month. One year my head cleared and able to sit up long enough to do an oil painting. The improvement starts September, peaks in November then starts dropping mid December. Jan and Feb are the worst then mid May to mid June is almost like November. The summer is another down turn. Some years I manage the symptoms better than others but the cycle remains fairly consistent.
I'm on the west coast of Canada and tried alot of things to figure it out. I even tried living a few weeks in the winter with all my windows open to see if it was an air thing. The logic was the windows are closed more. That wasn't it and was pretty cold inside... (Its a good thing it mostly rains in the winter here rather than snow.)
I'm not sure why there seems to be a cycle. Could even be a fluke. Nothing surprises me with this disease anymore.
Hi @Joeblow604, welcome to the forum. Thanks for sharing your experience. I'm sorry you have this horrible illness too. You are in good company here.
@JaimeS got me looking into my records:
2016 June: 4.5 (4.0-11.0)
2015 May: 2.9
2015 June: 4.8
2013 March: 3.5
2013 June: 4.6
2012 June: 4.8
2010 May: 4.26
2008 Oct: 5.1
2009 Sept: 4.3
2008 June: 3.3
2007 January: 3.8
2006 Feb: 4.7
2006 July: 3.6
2005 Oct: 4.3
2004 April: 4.6
2001 July: 4.2
2001 Feb: 4.9
2001 March: 5.3
I don't know what it all means but it looks like I went to the doctor a lot. No pattern though, I'm all over the map
Compare yr October and yr December or January because that's what I'm considering. Between Oct and Jan for you is a 25% difference... though it would be way more useful / potentially correct if it were in the same year.
I guess that's supposedly the psychiatric bit, since they can explain it no other way.
Sometimes we just take it into our heads to be twice as active as usual! It's miraculous! Shows the incredible power of the human mind!
Going for 'no', or at least hoping for it... we'll see what my case study of one shows us, if anything.
Thanks, Joe, and welcome!
I don't get any increase in activity level in the fall, but I do decline in the winter.
@JaimeS Your reference on another thread to Oxford criteria sent me back to the definition. I thought this aspect of the definition worthy of consideration in the context of this thread.
The symptom of fatigue should have been present for a minimum of six months during which it was present for more than 50% of the time.
One might reasonably have expected any competent draftsman immediately to see the problem with that. Apparently the fatigue may be present when it is not present. I am presuming that what is meant is that during the period of six months prior to diagnosis fatigue must have been experienced for a minimum of three months (EDIT and must have been experienced at the commencement of such period). If it mean something else then it is anybody's guess what. It could just possibly mean that if the symptom is present 50% of the time, it can only be diagnosed after a year.
The idea of remission can therefore not have been unknown to them, although it is just possible that they consider over-exertion to be the sole cause of relapse. But if they think that one cannot see how they come to a belief in dysfunctional cognitions and maladaptive behaviour. What could it be about the cognitions and behaviours that changes to bring about normality.
It is odd that there is no serious discussion of the phenomenon which you describe. It would be interesting to know what proportion of people with ME experience this.
Some may think it odd that I keep harping on about 1990. But we still have its legacy in CBT and GET. If the original idea fail, then all the accretions to it go too.
September is my golden month, and considering how far north I am is probably comparable to November for most of you in the Northern hemisphere.
I then crash, and the winter months are generally my worst. However I usually have a big improvement in cognitive symptoms in January and February, a sign that I after three months in bed and with a very low activity level am well rested. My most active months are May through September, though September is really in its own category since I often feel a lot better in addition to tolerating more activity.
Moving on September 1st turned out to be a stroke of genius. The plan was originally October 1st, which would have been a disaster since by then the slow gradual, seasonal crash is normally well under way.
Edited for errors.
This is all so fascinating guys. I promise to get blood draws and report back.
This is the lowest of the low in terms of science: not-at-all-blinded case study without a control. But I have to think even this data is better than none... I'll also do symptom-scale survey style testing.
[Edit: made the appt for first draw this coming Wednesday!]
I feel best in spring but it does not last
Results back already?!
That's right, CBC and differentials on WBCs back a few hours after the draw. Whoa.
WBCs overall look low, relatively speaking; either they've already started dropping or my theory is incorrect. I'll compare to previous falls if I get the chance -- in Dec I'll go home and check out all my other bloodwork.
Everything else does look notably robust in comparison to previous values, but the WBCs were the thing I was expecting to show differences, so we'll have to see.
Vit D will take longer to come back; I'll post once I get everything in from this visit.
BTW accidentally posted an update for this on another thread! https://www.s4me.info/threads/who-said-dont-bother-testing-patients.6532/page-12#post-124103
Tried increasing the Lactoferrin dosage today.
When I was very sick, I had trouble dealing with any increased immune activation. I ended up taking one pill of Lactoferrin in the evening before I went to sleep to avoid those symptoms.
Then, after I had to quit taking probiotics as often (about 9 mo ago), I took two pills of Lactoferrin in the evening to compensate for any pathogenic overgrowth.
So. Last night I took two Lactoferrin pills, and today I took one in the morning with my other pills.
Not sure I like this. Lactoferrin might be overdoing it at this point when my immune function is still high. Think I'm going to switch to the tea to increase platelets actually, and make Lactoferrin something I do in December or January.
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