JayCS’s Fibro Blog

2023-08-31 Thursday - recovery?: only very slightly. RR: 15:30-16:20 high, avg. 151, rest no problem.

What … worked / went wrong … today: ? All the BP measurements are directly or indirectly helping find tension-triggers, which is also good for fibro and energy.
How was I today?: Feeling 75-85%-ish (:white_check_mark:), energy today (:x:), sleep Wednesday night :white_check_mark:, sleep Thursday night :white_check_mark:), nausea 0% (:white_check_mark:), fog 10% (:white_check_mark:), no bites :white_check_mark:, vertigo 10%, 10% of the time (:x:).

Today working mainly on … recovery, RR vs. increasing/tolerating blood meds, energy, vertigo.

Need to re-think supps for BP:
Try NADH again, this time for that, Teitelbaum recommends 10-20mg 20’ before meals.
Order my Ω3 again (others too).
If I now need less passiflora for sleep, then what about daytime peaks, see here.
Magnolia bark I could also take in the daytime instead of at night now: with meals (or without).
Eleuthero is good for energy and for blood pressure.
Whilst apigenin and myo-inositol I could take more than I have been in the evenings.

So: Passiflora/passionflower works on the body’s GABA-system too. Since my sleep is now good … if I keep to my protocol :rolleyes: … and my blood pressure is also normal to low at night, I’m going to switch my passiflora and magnolia bark to the daytime now, and add more GABA in the daytime than at night too, I’ve been taking 2g spread over the night and 1g in the daytime, now I’ll try swapping that.

RR: Thursday's avg: 135/82, 1st readings excluded 134. Peak of 50' from 15:30-16:20 had an SBP-avg of 151, the avg. discounting that was 127. The avg. at night (2 readings) was 104,5/68,5, the avg. of the morning 7:00-9:00 was 120/69, discounting 1st readings 116. Wondering if the high systolic blood pressure 15:30-16:20 was from some kind of bladder strain, and whether that does justify the bladder exam....

9:32 121/76 (63) outdoors, after moving around a lot, but feeling relaxed for it. 9:33 115/76 (59) NSDR 9:35 after talking a second, some NSDR. 9:43 112/74 (63) supps; calm, NSDR. 9:54 after cutting off grass for 5’ 2 staircases up & down 10:01 154/78 (70) after strain of readjusting cuff 6x 10:03 120/78 66 also nicotinic acid flush. 10:16 140/92 (78) mail & eating 10:17 142/85 71 leaning 10:18 135 92 70 full flush, leaning.
11:15 136/85 (80) after 5’ shop slow, then looking at my plants. 11:15 114/73 (78) 11:17 112/73 (76)
11:38 134 85 80 moving a lot 142 75 79 41: 128 78 79 sip/pill flush wearing off NSDR 42 139 79 75 43 134 78 72 45 123 80 76
12:33 169 101 71 after pee & stairs fast, 12:34 114/73 (75) forum, 12:36 115/68 (73) 12:49 120/83 (68) 12:51 145/86 (74) 12:52 134/84 (69)
13:48 142/77 68, typing 13:51 133/82 (67) 13:53 140/86 (66) 13:54 136/80 (67)
15:00 139/95 (65) copying over these readings.
15:32 143/89 (69) pee urge
|15:39:00|170|97|72|Sitting after pee, strained, worried about wife|
|15:42:00|159|86|65| "
|15:43:00|154|88|69| "
|15:44:00|145|90|68| "
|15:46:00|151|84|67|" /work, NSDR|
|15:48:00|147|86|67|" /work, NSDR|
|15:49:00|149|86|70|" /work, NSDR|
|16:12:00|176|88|70|moving a lot, then strong pee urge|
|16:15:00|150|83|72|after strained|
|16:17:00|146|80|69| "
|16:18:00|140|81|67| "
|16:20:00|132|76|66| "
|17:14:00|137|81|68|slightly pee strained|
|17:16:00|140|84|70| „|
|17:17:00|137|83|67| „|
|17:19:00|125|76|70| „|
|17:47:00|120|81|66||
|17:48:00|134|80|66||
|17:49:00|113|83|66||
|17:51:00|116|78|64||
|17:52:00|124|82|66||
|18:35:00|132|82|63|
|18:37:00|123|85|60|
|02:22:00|103|70|62|
|05:38:00|106|67|61|
|07:15:00|123|68|62|
|07:16:00|115|70|52|
|07:21:00|103|57|53|
|07:58:00|131|68|58|
|08:01:00|118|69|53|
|08:11:00|127|76|68|
|08:13:00|118|73|61|
|08:42:00|128|74|56|

1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (doing things, quickly severe, muscles) ❌ vs. post postural ache (rest) (❌) is the only possible adjustment now, stiffness OK ✅: no TT, gardening/moving longer than 15' ➔ 80%/4 ❌, talking 5' ➔ 80%/4-5 ❌. White lips60-80% (❌). Can't do much more for exhaustibility/Energy and Sleep than keep track of triggers see 2), click for details:
EXHAUSTIBILITY today: “92%". 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 extremely slow?, with "?15h rest"), 1h very slow, 0h slow/medium/quick
SLEEP (click for details): 8h17, up 5x (51'), all deep ✅. 75%/2/5% 1xp1 st2 fw2' fl0' deep/ air? -A8 drymouth30% sore throat10-40% -> long sleeve and winter duvets helped, except nostrils 0/0-10%. stomach0-20%, everything else OK ✅ ➔ getting up: 80%/2 ✅.

GABA A2/+A3/, A3 A4:0 teeth✅ p0 FCS#1✅? (3rd # is lower back unrest)
Sleep 22:00-
23:09 21’ A4 fl15’
0:45 17’ A5 fw15’ sore throat 40% so long sleeve on.
2:22 7’ A6 BP right, standing 103/70 (62)
5:38 6’ 106/67 (61) stomach20%
-7:08 nostrils 0/20 cos of thicke duvet, but sore throat down to 10%, so good decision.
Sum: 2h+7h08-(21+17+7+6=)51’ = 9h08-51’ =

10:29 Handful of grapes without pips, hardly skin. Tongue tip immediately raw after 1’. Could that be this tannin? Seems so, wp says: “The astringency from the tannins is what causes the dry and puckery feeling in the mouth following the consumption of unripened fruit, red wine or tea.” This’d be exactly that. What does puckery mean? “causing your mouth to pucker (= become tighter until small folds appear), usually because of being sour” Hmm, that’s not quite it, but I spose it’s got to do with it. Just not sure if it’s worthwhile.

2) Watching TRIGGERS (updated Aug 23rd 2023) at least once a month with additional symptoms and continually bringing energy down from 20% to 10%, Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% ✅, tongue burning: 10% day, 20% night ✅, plus from grape without pips/skin (❌). Excitement (= stress) ✅: Only when someone got annoyed about me cycling very slowly on a very broad pavement, and just any contact. 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.

3) DOCS: Last update (simplified 18th and 23rd): VERTIGO: Aug 9th-14th: No cause of the severe vertigo & wonky gait on the 9th found in stroke/neuro. 20th: Need to take blood pressure and lipids more seriously now, adding meds to all the supps, even if the association with vertigo is unclear. ONCO/URO: Onco Apr 24th was useless up to now. Bladder exam Sep 4th mainly cos of bladder problems (finger exam July 31st, bloods Aug 7th). Click for details.

Starting Feb/March with “B symptoms” (GP Mar 29th: night sweats, cough plus appetite & weight loss), mamila swelling, PSA high Apr 20th. Mar 30th: So lung X-ray OK, Apr 6th: mamilla OK. Sweats OK Apr 9th, appetite OK-ish by June, weight OK-ish too, but down again after vertigo. Apr 24th: Weird, 20’ onco appointment, feedback STILL pending, incl. onco blood results (just others on July 20th). So now uro at least. Feb-bloods: Ω3 needs increasing, much too low.

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:).

2) Seizures and esophagus blocks fairly under control - click for details on SEIZURES: GABA better up (also for pee pain). Aug 1st, July 25th + 7th were only seizure-ish 4-5x, increase in May-June was stress/histamine/less GABA: LAST Aug 9th: 2x. July 17th (2), Jun 23rd (4) & 16th & 6th (2), May 25th (2) &14th/13th, Apr 16th/15th. Last ESOPHAGUS BLOCKS: Aug 26h, Aug 8th, July 23rd & 16th, May 31st (all 3 cos distracted), before that 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 seizur-ish 4x. 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. 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 - 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. 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:

No ‘research’ today

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

Lessons in self-care: Today no work, need time out after so much strain the past few days.
Reasons to be cheerful:
a) Enjoying the garden and the world.
b) Duey asked for oat flakes again.
c) Great woodpecker trying our lilac tree (recorded) and another one. I don’t think I’ve ever seen one near in nature!
d) Satisfying to have got the bills done and keeping up to date at the moment, cos new ones coming in every day (hospital will be expensive, but no worry.)
e) Guinea pig may be improving, altho it’s not clear how much will be possible.
f) Two great woodpeckers fluttering thru my garden/flowers and back, unbelievable! Maybe carnivorous, but so pretty with red head and red tail!
g) Subadult Robin came near during neighbour short chat
Simplified: Managed to find a way to carry all my cellar entrance mats inside at once.
Foggies: Wife gets angry from all the “careless” things that happen to me… I know why, if she doesn’t that’s her problem, I just say “I’m trying” - and she apologizes later.

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