JayCS’s Fibro Blog

Symptoms & Treatments
1325

2023-09-04 Monday - recovery? Yup, could have played TT. RR/Supp changes: good - apart from high pressure from the urethra pain.

Bladder exam itself wasn’t bad, energy still there, but that short sharp pain of 8 continued after it every time I had to pee, which is about once an hour. Made it easier to cry out/shout rather than just suffer it. My wife suggested a pillow to muffle that, esp. for the night, instead I used a scarf and a towel. 7.5 in the evening. By the morning about a 6 for about 1’ or 30’'.

What … worked / went wrong … today: ? BP OK, I seem as ever to react unusually oversensitive to the bladder exam

How was I today?: Feeling 75-85%-ish (:white_check_mark:), except the urethra pain during and after the exam, energy today (:white_check_mark:) - compared, sleep Sunday night :white_check_mark:, sleep Monday night :white_check_mark:, nausea 0% (:white_check_mark:), fog 10% (:white_check_mark:), no bites :white_check_mark:, vertigo 10%, 5% of the time (:white_check_mark:).

Today working mainly on … bladder exam and recovery from it, but also RR vs. increasing/tolerating blood meds, energy, and watching out for vertigo.

RR: Good, except from 15:00-19:00 after the cystoscopy, but despite the pain it as ever dipped under 100 from 2:00-6:00, that was measured after the pee pain of 6. I'm pretty sure the pee urge increases the DBP. At 5:50 that was 80, after pee 62, even more decrease than the SBP of 95 to 88.
09:43:00 142 88 62 fairly relaxed, a little tense ordering, typing flush
09:44:00 146 75 63
09:46:00 129 80 64
09:47:00 122 73 58
11:08:00 151 92 80 pee/stairs
11:09:00 145 73 71
11:10:00 130 75 73
11:32:00 143 90 79 website
11:33:00 126 86 78
14:42:00 172 87 75 after bladder exam
14:43:00 160 88 72
14:44:00 142 91 72
14:46:00 154 91 74
14:46:00 144 89 76
18:03:00 173 104 63 pressure on bladder
18:06:00 148 99 62
18:08:00 154 102 62
18:09:00 153 96 62
18:14:00 172 98 64
18:30:00 151 107 65 arrh
18:56:00 155 114 66
18:57:00 158 106 62
19:16:00 138 89 64
22:06:00 132 71 70 after p7 for 1‘
23:09:00 117 73 66 after p6 for 30‘‘
00:26:00 105 69 64 arrh, p6 30‘‘
02:24:00 92 65 59 Throat 40%
04:52:00 99 68 61 Throat 40% calendula
05:50:00 95 80 63 urge
05:55:00 88 62 59 after p6
06:54:00 100 65 63 after windows and bed
07:04:00 118 75 60 after loo. 79kg. 90% blue lips
07:57:00 187 98 62 moved, watered, pee urge & stab
08:00:00 145 84 54 rest ab bit
08:01:00 134 91 64 „
08:03:00 119 81 57 „
08:04:00 121 81 57
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, but could have, gardening/moving ➔ 80%/2 ✅, talking 15' ➔ 80%/3-4 (❌). White lips90-60% (❌). Can't do much more for exhaustibility/Energy and Sleep than keep track of triggers see 2), click for details:
EXHAUSTIBILITY today: “88%". 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 "12h rest"), 1h very slow, 2h slow, 1h medium/quick
SLEEP (click for details): 8h22, up 5x (22'), all deep. ✅. Sore throat 40%, so had to put on more clothes, despite thickest duvets. Everything else OK ✅ ➔ getting up: 80%/2 ✅.

GABA A2/+A3/ A3:0 A4:0 teeth✅ p0 FCS#1✅? (3rd # is lower back unrest)
Sleep 22:10-6:50 5 breaks of about 4’, +2’ cos one break was longer, measuring BP twice. = 22’.
Sum: 1h50+6h50-(22)’ = 8h40-22’ =

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 ✅. Excitement (= stress) ✅, except the pain, wasn't that excited beforehand. 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 Sep 4th: ONCO/URO: Onco Apr 24th was useless up to now. Bladder exam Sep 4th mainly cos of bladder problems found like the finger exam only a slightly enlarged prostate, nothing pointing to cancer in any way. 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. 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 31st, Aug 26th, 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 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 1st: NADH 10-20mg 20' again before meals, order Ω3 again (others too), passiflora & magnolia before 1st and 2nd meals instead of in the evenings, eleuthero up to 4x before 1st meal, keep up apigenin and myo-inositol in the evenings, in case. GABA down to max. 6x0,3 eve/night, +3x0,3 before meals. 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 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:

No ‘research’ today, except quick one for a forum thread, this is a study from 2017 saying that it’s not saturated fats that cause heart disease, it’s something inflammatory: Saturated fat does not clog the arteries: coronary heart disease is a chronic inflammatory condition, the risk of which can be effectively reduced from healthy lifestyle interventions | British Journal of Sports Medicine

Quality of life: 85%? (but “Feeling well”: 65-75%)

Lessons in self-care: Putting the bladder exam first today, but still looking a lot for BP all the time, trying to get a hang of it all.
Reasons to be cheerful:
a) At last Robin has started singing again.
b) In the past days I’ve been savouring the blue and great tits cheerful chirps more, realizing how cheerful it can make me.
c) Dunnocks have also now started singing again, and again that’s something I used to find boring, but now love it, too.
d) Pleasant surprise in itself that this started when one dunnock started replying to another in another garden.
d) A dragonfly is visiting us several times a day. A small pond would be nice, but too much effort for me at the moment.
e) I saw 3 white cabbage butterflies at once in the garden next-door, so now I know I was wrong to believe it’s always the same one.
f) My wife was again surprised I wasn’t “grateful” or relieved for the negative result, and asks if I’m in some kind of a “shock”. But I hadn’t believed in it anyway. And even if I had, I’d’ve played it like a game of cards. But OK, I spose I should be both grateful and relieved. I’m just very down-to-earth - as well as pragmatic / practical / serene - about all this. Helps me.
Simplified: -
Foggies: -

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