2023-09-16 Saturday - recovery? Less fluey, temperature decreasing. RR/supp changes? Not bad… <150 in the daytime, but >140 only from standing/thoughts and un-/dressing. Half the night <100, with nauseous headache and cold.
My white/blue lips are from strain triggered Raynauld (sympathetic mode), see “research”.
What … worked / went wrong … today:
Habit encouragement… :
Time (= stress) management:
Keep blog time up: 
Got Friday’s entry done at 8:00!
Keep forum time down:
Jump out of hamster wheels: 
- at last success to get the photos off of my new phone on to a
Self-treatments:
Wall sits: 9:45 11:45
Balance exercises: 11:45
Prepare supps by 15:00:
Back exercises by 16:00: 9:00
Encapsulating by 17:00: 15:00
How was I today?: Feeling 75-85%-ish (), energy today () - compared, sleep Friday night , sleep Saturday night , nausea 0% , fog 10% (), 0 bites , vertigo 0%, 100% of the time (). Temperature (all oral) down to 37.1°C, Sunday morning 7:15: 36.5°C.
Today working mainly on … time management, self-treatments RR, energy.
[details=“RR: HIGH BP PERIODS: Sep 12th: No more spike periods after stopping eleuthero on 10th. 13th: A few spikes and not enough dip at night will have been from the “flu”. 14th: Not brilliant, not diligent at daytime, but at night. 15th: When >150 that will always have been after doing something and it always went down <140 soon after. 110 at night, better than <100. 16th: Day same, night <100 with nauseous sinus headache and cold.”]
| Battery flat | 16.09.23 | |||
|---|---|---|---|---|
| 14:09:00 | 153 | 84 | 69 | |
| 14:10:00 | 141 | 85 | 66 | |
| 14:11:00 | 141 | 95 | 68 | |
| 14:34:00 | 135 | 90 | 69 | |
| 14:35:00 | 134 | 78 | 66 | |
| 14:36:00 | 141 | 85 | 68 | standing, pee urge, thoughts, 37.1°C |
| 14:38:00 | 146 | 85 | 69 | |
| 14:39:00 | 142 | 84 | 66 | |
| 20:06:00 | 139 | 87 | 62 | |
| 21:39:00 | 146 | 84 | 68 | arrh |
| 21:40:00 | 138 | 83 | 64 | |
| 21:42:00 | 133 | 83 | 61 | |
| 21:59:00 | 124 | 79 | 60 | |
| 22:12:00 | 146 | 90 | 59 | |
| 22:13:00 | 141 | 87 | 60 | |
| 22:14:00 | 141 | 85 | 60 | |
| 22:16:00 | 142 | 94 | 67 | arrh |
| 23:31:00 | 123 | 73 | 67 | 6 till 0:00 |
| 00:04:00 | 128 | 76 | 63 | |
| 01:35:00 | 98 | 73 | 68 | arrh |
| 03:08:00 | 98 | 64 | 60 | Head 30% nausea 20% sore 20% „cold“ 20%, feet cold despite 5pairs |
| 04:05:00 | 84 | 58 | 67 | arrh, back of head 20%, damp 20% |
| 05:59:00 | 98 | 75 | 71 | Head 30% |
| 06:47:00 | 106 | 76 | 73 | -6:45, thirst, dry 50% head 30% |
| 07:21:00 | 124 | 71 | 66 | |
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[details=“1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise () vs. post postural ache . Stiffness . No TT, gardening/moving ➔ 80%/3 (), talking 15’ ➔ 80%/3 , kids using ear plugs and not talking too much myself ➔ 80%/3 (but it’s more about exhaustion. White lips60-80%? (). Exhaustibility “88%-” and sleep , click for details:”]
[details=“EXHAUSTIBILITY today: “89%”. Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today’s ENERGY profile moderately slow, with “13h rest”), 1h very slow, 2h slow, 0h medium/quick"]
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[details=“SLEEP (click for details): 7h35, up 5x (55’), all deep. Head 30% or back of head 20%, from 3 to 6, partly with nausea 20%, sore throat 20% (I think more and also after 3), „cold“ 20%, feet cold despite 5pairs, but somehow also wet/damp 20%, thirst, dry mouth 30-50%. 70%, but dream-thinking about work + private mails “all night” /, everything else OK ➔ getting up: 70%/2, but soon 80%. What’s that mechanism, Is it the warm clothes causing me to sweat, get damp, more thirst, more headache? No I was getting damp and cold at the same time, the previous nights, so I guess this is just flu wake plus very variable temperatures now, very hot at day, very cold at night.”]
Sleep 22:15-6:45
Sum: 1h40±6h45-(35+4*5=)55’ = 8h25-55’ =
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2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) (✅): neighbour 1 3x10', neighbour 2 2x4' people on the street 2x1', kids 60', cats 40', guinea pig 20': all of this a tension of about 60% - . Click for list...."
(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
3) DOCS: Last update Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.
Scary (graphic…): At 20:10 I got a block from sweet potatoes, I was unconcentrated, had twisted my torso directly after eating. After 5’ trying to massage it down, I tried the other way, but couldn’t get it up and out again in the normal way, needed to be considerably more deep and forcefully. No acid tho, just a ridiculously small portion…
4) UNDER CONTROL ✅ (attention necessary (✅)):
1) GI, pee, local pains, weather, dry mouth well under control: Details...
except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?
Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
‘Research’ today: Made me realize that my white-blue lips are stress/strain induced Raynauld.
The diagnostic procedure I’d think is to exclude something else or distinguish between primary Raynauld disease or if it’s caused by something else secondary Raynauld’s phenomenon. (The terms are used a bit interchangeably tho, despite what wikipedia says, e.g. primary and secondary Raynauld’s phenomenon.)
What I do about it is:
Passively socks and warm bedclothes, actively cold or alternate showering, as much movement as my energy allows. And supps for blood flow: B3, B12 I take a lot, arginine and B6 might help too, evidence of all is slight.
Lips white to blue:
It just came clearer to me that my often white to blue lips will be the Raynauld too. Looked it up, it’s rare, but happens. My cardio did refer to “circulation” and my feet, but I never made the connection to see my lips as part of “Raynauld”.
Also wikipedia just put me on the track that Raynauld can be triggered by cold and also stress. I didn’t realize stress, hadn’t noticed that with my feet cos they seem only to react to the cold, so on really hot days I can take the 2 woolen pairs off and when it’s colder I’ll need a hot water bottle. But my wife can “read my lips”: When they’re white(r)/blue(r), I’m overdoing it, so that’d be “stress”, meaning physical as werll as mental strain of 20 minutes or so. Yeah, of course they go blue when I come out of the cold shower, so the cold is a trigger for them too. And they are never red, haven’t been for years - maybe since fibro? The paleness is baseline 40-50%, and regularly (every day) goes up to “70-100%”. Maybe I should call white 80% and blue 100%…?
My feet may occasionally hurt, but not really. Not even if I’ve been in a cold shower and pull up my toes for some reason, reducing circulation and making the toes and more go blue inside of 30 seconds.
Via my lips we’re actually coming full circle to the connection to fibro: “Stress”, i.e. strain, which is increasing, since almost all activities of even a few minutes have become more and more of a strain.
Now someone fibro recently asked if it’s the facial fascia making my lips go white and blue, an interesting idea.
A review article from 2016 https://www.nejm.org/doi/10.1056/NEJMra1507638 (which wikipedia links to) says about the mechanism:
In persons with Raynaud’s phenomenon, the already-heightened sympathetic vasoconstriction in these specialized areas is further amplified in intensity and scope: exposure to cold can evoke intense sympathetic-mediated vasoconstriction throughout this vascular network, including upstream arteries, which undergo vasospasm, arteriovenous anastomoses, and arterioles providing nutritional support to the skin.
So it’s the fight or flight sympathetic “stress” mode that is increased.
Secondary Raynauld worse for skin:
This is about both forms, but if associated with scleroderma, meaning it’s secondary Raynauld’s phenomenon, the nutritional support of the skin is much worse than in the primary form, leading to “endothelial dysfunction”. My skin isn’t dying off, just I have regular small skin issues on my right foot, so have to keep on my toes 
with tea tree oil.) So as the review says, people with secondary Raynauld are a lot worse off.
The cold in Raynauld’s and in fibro - this is for Raynauld, but a lot sounds similar to fibro, I’d think:
The avoidance of cold remains the most effective therapy for any cause of Raynaud’s phenomenon and is a key component in the successful management of the disorder in all patients. Cold avoidance should not be considered to be a passive approach. Systemic and local warming are highly effective at increasing blood flow in the skin. Systemic warming is best accomplished by keeping the whole body warm with layered clothing, gloves, and head covering; avoiding rapidly shifting temperatures, such as rushing into an air-conditioned area; and avoiding cold and breezy conditions. Local hand warming with gloves and rubbing the hands in warm water or with chemical warmers can help prevent an attack or speed recovery. A typical attack lasts 15 to 20 minutes after rewarming.
This confirms my hot water bottle, also the chemical warmers (iron filings) I have with me just in case, usually gloves, always layered clothing.
Interesting though: breezy conditions and attack lasting 15 to 20 minutes after rewarming. Longer than 15 minutes in a breeze, draught, AC (e.g. car) or similar cause a whole body pain worse than in cold for that time. And my recovery takes 3 to 10 hours. So I’m wondering if that is a similar or a completely different fibro mechanism rather than Raynauld.
Quality of life: 85%?, “Feeling well”: 80-85%.
Lessons in self-care:
a) The esophagus blocks changing a little is additionally making me think even more that it’s about time to do the dilation. Also maybe a sign that cycling back from the cats I saw my professor with wife and kid, we grinned hello, not sure if he knows exactly that I am “the Schatzki ring”, but we’ve seen each other in various contexts through the last 3 years.
b) My wife wanted to talk politics a bit, and I’m always thinking how to quickly get people (incl. myself) to the heart or rather head of the matter, to go somewhere, keep calm, rather than get caught up and endlessly revolve and wallow in emotions. More and more I realized like with everything we can think calmer if we make sure we understand reasoning, that any issue will have more than 5 pros and 5 cons. And if we “don’t understand” then that’s not the time to have an opinion, it’s the time to ask for information. Funnily she was expressing understanding for people’s emotions she doesn’t agree with and chiming in with politics-bashing. So i could warn how she’s in conflict with herself there and at the same time point out how that emotionality comes about - maybe mainly lack of realization about the complexity of life. There’s lots we won’t be able to understand, but it’s about getting educated, or to break it down: If I don’t know at least 5 pros and cons of a matter, I keep my mouth shut.
Reasons to be cheerful:
a) Our most cheerful great tit whose cheep chiiirp I love today I heard cheep chirp chirp and varying a bit. I still love that chiiiirp slide upwards best, so cheerful.
b) A pigeon in front of my room has a melody with a lot of variety, it seemed, with the first upbeat much higher than the rest, dropping a third on the first go, and ending on that high upbeat, which is funny cos cos usually the upbeat and end is low.
c) Nice catching the sunrise Sunday morning.
d) Finally getting a better hang of my new phone, and at last found it’s easy now to transfer photos to my laptop after all. Also the photos may be better and still aren’t much bigger than 1MB, which I prefer. So catching up with the plant identifying now, altho it’s more keeping track of developments in the garden than identifying.
e) Good to see I’m getting the new habits implemented quite well now, this first.
Simplified: Preparing supps it seems easier to keep the lid in the hand of the bottle, cos it’s not that awkward, but I save looking for where I put it.
Foggies: This dropping stuff was a bit better today, but it still occurred to me that it’s more a “body” fogginess, or the brain as regards the body. Not being able to find / remember words or ideas is usually pretty good, and quite OK at the moment.
[details=“Development: Look before Aug 22nd for more details. Click for links to “biggest successes” (after June 18th 2023), “summary” (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting”]
Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023
- 8 weeks after jab#3: stabilized
- 1st Jab-sfx-summary, last edit: Feb 7th.
- My food 2023.
- My blog references, e.g. abbreviations, supp chart/overview
- My “How to symptom track & trigger hunt”
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