JayCS’s Fibro Blog

2023-09-14 Thursday - recovery? Well, flu is better. RR/supp changes? Still not that pleased any more.

What … worked / went wrong … today:
Flu temperature slowly improved, did a lot for work, too much, I spose, tried out zhan zhuong, standing exercise coming from tai chi / qigong, which didn’t seem to hurt or harm, but during a cycle walk in the evening, my wife from the colour of my face and lips saw we need to break off and go home.

Habit encouragement…:
Time (= stress) management:
Keep blog time up: (:white_check_mark:) didn’t start with blog, cos I needed to get work stuff and also orders done, which had a higher priority. But that brought my self-care out of sync.
Keep forum time down: :white_check_mark:, but did research high HDL and standing meditation & Heiner Frühauf/Fruehauf (Lyme causes of fibro)
Jump out of hamster wheels: :x: - my wife gave me a “6-”, that’s a fail, for self-care at 20:15. But look who’s talking… :grin: - I was eating my 3rd meal half an hour before her. Also I did get quite a bit done, and it was important, I just can’t focus on everything at once, so today I went out of balance for work, but nothing else.
Self-treatments:
Wall sits: :white_check_mark: and 3 10’ zhan zhuong :white_check_mark: :white_check_mark: :white_check_mark: (whilst eating, I admit.)
Balance exercises: :x:
Prepare supps by 15:00: :x:, at 19:00.
Back exercises by 16:00: At 8:00 :white_check_mark:
Encapsulating by 17:00: (:x:) (none, but wasn’t that nec.)

How was I today?: Feeling 75-85%-ish (:white_check_mark:), energy today (:white_check_mark:) - compared, sleep Wednesday night (:x:), sleep Thursday night :white_check_mark:, nausea 0% :white_check_mark:, fog 10% (:white_check_mark:), 0 bites :white_check_mark:, vertigo 0%, 100% of the time (:white_check_mark:).

Today working mainly on … time management, self-treatments RR, energy.

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.
17:17:00 150 91 72
22:15:00 133 85 67 arrh, tired
23:20:00 125 69 69
00:35:00 98 69 70
01:16:00 97 66 66
02:31:00 106 73 62 arrh, bit damp clothes
03:45:00 116 74 59 thirst, dry 50%, head 30%
05:57:00 113 76 63 5‘ / 6 / p0 →
06:06:00 126 69 58 jacks in dawn, cold → 3rd duvet
07:41:00 143 81 67 Pee, quick getting up.
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (❌) vs. post postural ache (❌). Stiffness ✅. No TT. Gardening/moving ➔ 80%/3 (❌), talking 5-15' ➔ 80%/3-6 ❌. White lips60-80% (❌). Exhaustibility "90%" and sleep ✅, click for details:
EXHAUSTIBILITY today: “90%". 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 "10h rest"), 1h very slow, 1h slow, 0h medium/quick
SLEEP (click for details): 8h33, up 6x (40'), all deep. drymouth30-50% 70%/2-3 ✅, everything else OK ✅ ➔ getting up: 80%/2 ✅. Damp hot at 2:30, thirsty dry headache at 3:45, restless at 6, and cold from being up 10', so 3rd duvet, finally getting up at -7:33 clavicle slightly, cramps in calves and thighs, and thirsty, so quick B-supps

Sleep 22:20-7:33 Sum: 1h40+7h33-(6x5+10)’ = 9h13-40’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: work was OK, just maybe too much in one go, and 2x live: a 3' phone call with defined questions and decisions more taxing than an 8' "unimportant" video call with 2 people. Ordering a new bank card was easy. Having to do a transfer before next Tuesday is a bit nerve-wracking. Not being able to get to the photos on my "newer" phone is, too, I'll need that for uploading insurance bills for instance as well as uploading the garden photos into the identifying tool and saving them on my laptop. Extremely nerve-wracking was trying to type etc. on the new phone, needing new ways of moving around on it. I still wish I could get it back. Starting to miss the various lists on it, but I'm starting to replace the most necessary, the rest belong to the past. Clearing out process. 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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.

4) UNDER CONTROL ✅ (attention necessary (✅)):
1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% :white_check_mark:, appetite :white_check_mark:, pee pain: 0p1-2 :white_check_mark:, lower back unrest :white_check_mark:. Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND :white_check_mark:, dry mouth (day and) at night at least not hurting/sticky (:x:).

Looking at my esophagus blocks of 2x a month that doesn’t necessarily justify the stress of going into hospital for a dilation.

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 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:

a) High HDL problems, which I put on Wednesday’s entry, cos I was a bit behind.
b) Zhan zhuong, standing meditation someone who got fibro young suggested as a core point for pain. However doing the first 3 exercises of this video didn’t harm, didn’t help. I might continue tho.

Quality of life: 85%, “Feeling well”: 80-85%.

Lessons in self-care:
a) Put work first today, so nothing gathers moss and causes followup issues.
b) Did manage to keep some self-care up, just my wife caught be in a bad moment, that was after the cycle-walk with her and I needed a rest and to get some blog stuff done before I do the supps.
Reasons to be cheerful:
a) The “flu” seems gone, altho I can now do just as little after.
b) Good to have got work stuff done
c) Good that I can be contacted due to having the new replacement SIM card for my phone (but still disappointed that I’ve maybe lost contacts etc.)
Simplified: -
Foggies: Didn’t seem worth mentioning, but I think actually it is: Several movements like dropping things every hour, I’d think about 30 per day. May not be that something actually happens, but I gasp cos I feel it will and I can’t do much about it. But is this every day? I don’t want to count, so I’m guessing it’s on bad, not good energy days.

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