JayCS’s Fibro Blog

2023-01-31, Tuesday - Energy 13% - depressed for a change… Miss our balcony magpie, Jacob, who’d lost half his tail, so like the one on this photo, and so couldn’t fly particularly well. RIP (probably…) :crying_cat_face: Maybe that’s another reason why I haven’t much appetite atm. And: Sold something on eBay for the first time, sent it, now nervous, hope they don’t cheat me - quite a bit of stress, which is dangerous, dunno if it’s worth it, bit of an exciting adventure tho.

blackbilledmagpie

Sleep 90% / Feeling 80%-ish / nausea 0-10%, fog 10%

New Habits: Click for details of those I'm still working on. Last change 14th: deleted B-supps & earlier antihistamine & leg stretches and turned daylight lamp & back exercises & teeth into reminders, leaving (reduced) 4: bed, ACT, stretches & cold food out.

:ambulance: Bed 23:30-8:30/9:00. (:white_check_mark:)
:ambulance: Note thoughts and emotions (ACT) (:white_check_mark:)
:ambulance: More leg stretches. (:white_check_mark:)
:ambulance: Cold foods out of fridge 2h earlier than eating. (:white_check_mark:)

Today's FM symptoms unchanged from WPI 11 & SSS 9, except....: SSS +1 for a short bout of depression (30%), so doesn't really count as that, just don't want to fog it over (click for details)

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10%, stiff 10%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9+1=10 of 12: Fatigue 3 (87%), insomnia 3 (10%), fog 2 (10%), headache 0 (0%), GI 1 (10%), depression 1 (40%)

Triggers & resulting Symptoms

JAB#3 (on Nov 7th) causing MCAS / histamine problems, esp. energy narrowed to (10-)15-20%. 26th: Tongue & muscles better again, but pain & fatigue. 25th: Burning tongue after evening olives. Sore buttock (& leg) muscles like after the jabs since 23rd. 22nd: no tongue, try more pecans, praps with DAO before? Lips still very white.

JAB#3 (on Nov 7th) → MCAS / histamine since end of Dec: 15-20% energy for under 45’, then white lips & pale face. But if I keep strain down to ‘half speed’ (70%) I can push on thru for hours - with a few breaks and lots of task-switching. Not that much specifically histaminey problems since end of Dec, occasionally sinuses and nausea, no more ill ache. Usually white lips & face 30%, and some sliding instead of walking indoors 10%, bit more cold intolerance 30% (long johns 24/7, 2 thick duvets at night). From Jan on, bit warmer (5-12° C), I’ve swapped long johns for a 2nd pair of pyjama trousers at night and when I’m pretty active at daytime sometimes no long johns, but when out slow cycling/walking. And don’t need hot water bottles any more, whether I can manage a cold shower (usually) or not.
Development summarized: Down: Nov 17th - Dec 1st, worst 17th-18th, best 20th & 29th. Up: Dec 2nd-6th, Down 7th-8th, Up: 9th-14th, best 13th-14th: Winning easily 4:0, and slow energy for 4h! Down: 15th-21st 7 days, Up 22nd to 24th winning roughly 3:1, Unsure: 25th-31st: TT 2:2 or no play possible: 25th 2:2(?), (26th 0), 27th: 2:2, (28th 0 - ordered supps, not cellar), Down: 1st-2nd, 4th. Up: 3rd, 5th. Both: 6th-11th - sinuses, tongue, lips, runny, DAO helping. Cold: 12th. 13th: GI: HP supps? 14th: B3-Flushing up!? 15th: Runny nose, 16th-21st & 25th-26th…: Tongue off and on. 23rd-25th: Sore buttock (& leg) muscles like after the jabs since 23rd. 26th: Cold, pain & fatigue, energy from 18% to 10% since 19th. Triggers tooth cleaning and moving out. 27th: Bad. 28th: Bad to better. 29th: OK, considering. 30th: No burning after 200g baked beans, but a bit, later, after then another 50g, short colon sting praps from the tomatoes, no stronger urge from them tho.

Treatments: Antihistamine, and extra GABA from Nov 29th. Stopping the antihistamine at the turn of the year quickly caused sleep problems.

SLEEP (click for details): 7h56, up 5x (37'), 7h30 deep ✅ ➔ Feeling 80% well, Ache 1 of 7 ✅, getting up: 80%/1 ✅. Nostrils 5% stuffy 100% of the night. Urge/excitement to get stuff done from 5/6 on, plus stomach burning.

A3 teeth cold shower p0 Sleep 0:30- Why not 21:00? 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
1:30 7’ 80%/1/15% p0 st1 sip fw1’ deep air A4 cream
(nostril/s5% nauseous% stomach% sinuses% headache% sore throat% stools firm?)
3:20 4’ 80%/1/15% p0 st1 sip fw1’ deep air A5 cream
(nostril/s5% nauseous% stomach% sinuses% headache% sore throat10% stools firm?)
5:07 8’ 80%/1/15% 2xp0 st1 sip fw1’ deep air cream
(nostril/s5% nauseous% stomach20% sinuses% headache% sore throat10% stools firm?)
5:56 14’ 80%/1/15% p0 st1 sip fw1’ deep 6 cream
(nostril/s5% nauseous% stomach20% sinuses% headache% sore throat10% stools firm?)
8:22 4’ 80%/1/15% p0 st1 sip fw1’ deep cream
(nostril/s5% nauseous% stomach20% sinuses% headache% sore throat10% stools firm?)
-9:03 9:10 B1-4 5‘ in sun, 80%/1/15% p0 st1 sip doze cream
(nostril/s5% nauseous% stomach20% sinuses% headache% sore throat10% stools firm?)
Sum: 9h03-30-(7+4+8+14+4=)37 = 8h33-37 = 7h56, up 5x (37’), 7h30 deep

ACTIVITIES (aim: 40% energy)ACHE: ?80%/?2 ➔ TT 3:1 (picking up 0(1) balls) ➔ 80%/2 :white_check_mark:, quite a few small chores (yesterday too), longer phone in evening ➔ 80%/2 :white_check_mark:
ACTIONSPAINS :white_check_mark:: except GI :white_check_mark:, esophagus: better :white_check_mark:, pee pain: 0xp1-2: better :white_check_mark:, lower back unrest :white_check_mark:, finger tips: better now I’ve been moving stuff less :white_check_mark:. Lips chapped, improving :white_check_mark:.

Click for details on Touch, Covid, Weather, last seizures Jan 14th & 15th, last esophagus block Jan 8th, last jaw pain Jan 10th. Well I spose since then 1-2x/d.

Touch: :white_check_mark: Covid: :white_check_mark: Weather: Indoors :white_check_mark: Outdoors :white_check_mark:. Daylight lamp regularly on.
Last focal seizures: 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: 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…
Jaw: Hardly & seldom pain since Nov. A bit more in Jan. Jan 6th: Slightly psychosomatic from memory of a painful time. Jan 10th: A bit after tooth cleaning. After: regularly a little bit, 1-2x/d.

Treatments

Click for details on bloods (Dec 9th), practitioner ideas (last on Dec 20th), acupuncture (last on Dec 22nd). Last started masterwort (warily) and Hexacyl on Jan 6th - low & slow. 13th: Unsure if the stomach problems are from those two, so stop-start to see. 16th: again feel 2x2 drops is too much, stomach problems. 17th: 2x1 drop, 2x OK, praps a bit. 19th: 1-2x1 drop each again apparently too much (nausea).

Bloods at cardio Dec 9th: Homocysteine a bit high, continue B3 and B2, phosphate not that bad. Leukocytes low! CK, muscular, too high, praps fibro?
Alternative health practitioner (“Heilpraktiker”) on Dec 6th+20th: Jan 6th: Started masterwort & Hexacyl, lower than recommended (2x1 drop each), adding 1/d. 9th: Further research after reply to take manganese and vit. E. 13th: Unsure if the stomach problems are from those 2, so stop-start to see. 16th: again feel 2x2 drops is too much, stomach problems. 17th: 2x1 drop, 2x OK, praps a bit. 19th: 1-2x1 drop each again apparently too much. 25th I don’t feel like taking “her” powders at the moment (fungi & chlorella don’t taste good, roasted pumpkin seeds sometimes yes), lost some fun in eating, need to reclaim that. 26th: nauseous after masterwort. 27th-30th OK after masterwort.
Chinese Acupuncturist - Session #32 on Nov 4th., after 14 days :white_check_mark: “Energy still pretty stable at 20%, despite jab-nausea…”, now it’s down from that so often that I tried #33 22nd Dec. Wasn’t worth it: No improvement, sleep too short.

SELF-PHYSIO (click for details): 79'

white_check_mark: airing 4x2’, cold shower 1x(10’), cream/oil fc/ey/hd/ft 4x1’, teeth 2x2’, HWB 0x3’, breath exercises 5x1’, Y. Nidra 0’, massage gun 0x3’, daylight lamp/sun 6x5’, plantar/calf stretch 2x1’, acupressure 0x1’, palpate 0’, belly 1’, back 10’, !!aloe vera 0x1’, twist-stretch 2x1’, yoga/stretching 2x1’, hang 1x1’. hunchback-pillow 0’.
Combine: next?
:x: wart x1. neck 1+ x1’, RR: 0, neck 2 0x1’, workout 7’, horse stance 1’, balance roll standing 5’, breath-hold 12’, jolt-jump 1’, marionette-hang 1’, shaking dance 1’, bent leg fall 1’.

Supps Jan 8th (48 supps): Supp costs: 466€/m (8th) + 16€/m for empty capsules = 482€/m: Jan 29th: psyllium again hurting, so stopping that. Masterwort/Imperatoria 1 drop per day seems to be OK now, so trying 1 of Hexacyl again. Jan 11th: Still to get her MSM, manganese, E as tocotrienol and my silymarin again. Yet to try: Creatine? ATP again, encapsulated, for phosphate?? Click for details on the lists, with dosing batches by times and tubs.

ZERO now: Arg, alpha-GPC 1x150mg, fisetin: 0x196mg, huperzia A, mumijo, NAC 1*.5g, NADH, Ribose, Serrapeptase, Zinc, P5P (= vit. B6) 0x27mg (high).

REGULAR as of Jan 8th (48 supps): (R-)ALA .2g, aloe vera juice 50+ml/d, apigenin 1x50mg, vit. B2 6x600mg, vit. B3/Nia 6x0.6=3.6g, vit. B5/Panto: 3x.5g vit. B12 (methyl-C) 1x5mg/4m s.c., AND B12 1x0.2mg (all 3 good types) WITH vit. B9/5-MTHF 1x0.4mg, vit. C 2x3x.5g, L-carnitine (Cr) 8x0.6g, copper (Cu) 1x2mg, vit. D3 20.000 IE = 500mcg, WITH vit. K2 (MK7) 200mcg, DAO before meals, EGCg 1x(50%, incl. L-theanine?).5g, ellagic Acid (Ell) 2x.2g (+43mg vit. C), eleuthero (eleu) 2x4,5mg, feverfew (fev) 3x.4g WITH 3x.2g MSM, GABA (Ga): 4x0.3g+2x.6g=2.4g, ginkgo (Gi) 3x168mg, (L-)glutamin (gltm, glu): 2x0.6g, glutathione (gltt) 1x250mg, honokiol (Hon) (2%)x2x.4g=16mg, luteolin 1x.2g, magnesium glycinate (mag gly) 2x50mg, mag malate (mag mal) 0x45mg, mag threonate (mag threo) 2x50g, monkfruit 0.1g, myo-inositol 1x1g/1!d, olive leaf extract (oli) 2x.75, Ω3 1x5mg, passiflora (Pf) 3x.35g, Levagen±PEA 1x0.3g, pine bark (pin) 2x.5g, PQQ 1, psyllium (Ps), CoQ10 (Q10)(ubn) 1x.1g, quercetin (Qc) 4x.5g, resveratrol (Rs) (50%) 2x.4g, rhodiola (Ro) 2x.35g, rutin (ru): 1x522. SAM-e (Sa) 2x.1g, Selenium 1x.2mg, Silymarin (Sil) (80%) 1x.5g (+83mg L-cholin), (L-)theanine (The) 1x.2g (+.15g polyphenols) (next 2x0.1mg), TMG: 6x0.6=3.6g (as much as B3). Plus rupatadine/Rupafin 1x/d since jab#3 Nov. Plus practitioners recommendations: #1) masterwort / Imperatoria ostruthium, #2) Hexacyl (Sulphur D4, Lycopodium Ø, Berberis Ø), #3) add Steirocall comp. (for “arthrosis” & bones) (& umckaloabo). Not at all sure about any of these, after 3 weeks of Hexacyl, #4 bitter herbs when Hexacyl bottle is finished, #5 more B5 now, #6 “glutathione activator” → upping MSM, selenium, and have asked if manganese and vit. E are important. #7 Pro Mucosa: added Hericium, can’t increase glutamine, asked back about ficin and biotin, #8 Chlorella, #9 B9 as 5-MTHF for homocysteine.

What-when-details: Updated Jan 8th.
FAIRLY ON TIME…:
“16:00” preparing pills
“18:15” A1 PF#1, 2x threo., Lut, Qc#1.
5’ “empty time” = to see if I need worry time.
“18:30” myo-inositol + teeth
“19:30” A2=12+1 2xvB2#1 2xvB3 vB5#1 2Cr#1, PF#2, Cu, .3gGABA CoQ10 (oil) &! Se, 2xTMG#1. Meal: 1PQQ, 5ml Ω3 & Hon#1. monkfruit.
Meal 20: ’ +xylitol. Back exercises. Soak seeds. aloe.
“20:30” pre-A3 agigenin 1h before bedtime + teeth
“20:30” chamomile
“21:00” A3 PF#3 0.3gGABA & .6glu & Qc#2 Hon#2 + 1 Rupafin or A2
“0:00” psyllium / medicinal clay if a sleep break is 2h before & after other supps.
“2:00” A4 300mg GABA + teeth
“4:00” +0.25 GABA
B=11/ ’ in sun/lamp “07:00” ALA, Ro#1, Qc#3 Rs#1 2xSAM-e EGCg + Fev/MSM#1 + Sily +2The.
Back exercises.
Soak Soak pumpkin seeds & almonds.
Teeth.
Meal ’ in sun/lamp. aloe.
’ in sun/lamp C=23/ with meal: 2xB2#2 2xvB3#2 vB5#2 3xvC#1 3xCr#2 .6GABA#4, gink#1, Oli#1 pine bark#1 2xTMG#2 2xEleu 2gly PEA Rutin = 23. (vit.D3 1/wk)
xylitol
teeth
“11:00” D1(0) + Teeth (+2h/) Ellag#1, Fev/MSM#2, gi#2.
“14:00” 0 Meal ’ in sun +aloe
“14:15” D=15/ ’ in sun vB2#3 "2"vB3#3 vB5#3 3xvC#2 3Cr#3, .6GABA#5, gink#3 Oli#2, pine#2, TMG#3
xylitol
teeth
“16:00” preparing pills: 5x to encapsulate.
E “17:00” (“meal/acids+2h”) Ellag#2, Fev/MSM#3 Qc#4, Ro#2, Rs#2.
A1 “18:00”
myo-inositol
Eat + aloe + PQQ+Ω3 if not earlier.
A2 + apigenin & heating down
(B12 s.c.: 2022-11-04, 2022-04-10, 2022-01-10: B12 5mg methylcobalamin s.c.)
eve:

The day's supp-compartments (8', plus 10' making capsules), Jan 8th

Pf: A1+A2+A3, vB2: 2A,2C,2D. vB3: 2A,2C,2D. vB5: A,C,D. vC:0A+3C+3D 8Cr: 2A+3C+3D, Ell: D0+E. Fev/MSM: B,D0. Ga 4-5x: a2,a3,a4,C,D, Gi: C,D0,D Glutathione: B. Hon:A2.A3. Oliv: C,D. pine: C,D. Qc: A1.A3.B.E Ro:B,D Rs:B,D SINGLE: A1: 0xMgMal, luteolin. 2MgThreo. myo-inositol (15’ before meal 1x/(2)d) A2: Cu (separate from P5P etc.!)+0P5+1xQ10 (->ubiquinone <150mg/d! atm ubiquinol), 1xSe. (A2:Ω/Pq:meal, A3: apigenin) A3: Glutamin (0c1), B (or C): ALA, EGCg, 2xeleu, , Ru, 2 Sa, Sily, 2Th, C: 2 Gly, PEA, DAO before risky meals? monkfruit usually evenings, aloe vera. D3 saturdays. (A2:0Se, up soon)
TALLIES Jan 9th: correct?
A1=6+1 Pf#1 Qc1#1, Lut, 2 MgThreo, + myo-inositol + (DAO?)
A2=16 2vB2#1 "2"xvB3, vB5#1, 2xCr#1, Cu, Pf#2, Ga#1, Hon#1, Q10, Se, 2TMG#1 + Rup. = 16
+Ω3/PQQ/aloe +monkfruit +apigenin 16(+5) -1 vB5 = 15.
A3=5 Pf#3, Ga#1, Gltm, Hon#2, Qc#3
A4=1 Ga, A5=1 Ga#2. A6 = 1-2 psyllium.
B=11 ALA, EGCg, Fev/MSM#1, Glutt, Qc#3, Ro#1, Rs#2, 2xSa, 2Th, Sily (DAO?) = 11/
C=22 2vB2#2 "2"xvB3#2 vB5#2 3xvC#1 3xCr#2 Ga#4 Gi#2 Ol#1 Pin#1 TMG#2 2xEleu 2xMgGly PEA Rut = 22 - vB5 = 21.
D0=2 Ell, Fev/MSM#2, Gi, + (DAO?)
D=15 2vB2#3 "2"vB3#3 vB5#3 3xvC#2 3xCr#3 Ga#5 Gi#3 Ol#2 Pin#2 TMG#3 Fev/MSM#2
25th: -vB5#3: so only 14/
E=4 Ell, Qc#4, Ro#2, Rs#2. Fev/MSM#3
B12 4-monthly, D3 Saturdays.

Development

‘Research’ today: No.
Lessons in self-care #561 Sat out the the depressive hours and saw them fade… eating needs to get better, and prioritizing these entries and my “to do hub” again - when I’m up to it, not before!
Reasons to be cheerful #599 Quite a lot done after all…

Click for links to jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting