JayCS’s Fibro Blog

Symptoms & Treatments
1067

2023-01-08, Sunday - Energy 15%

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

After 2 weeks of turbulence - de-cluttering & moving, my wife scolding to be calmer with her in her break, she has to work again which is unleashing the effectivity/priority part of my brain again, starting today with de-cluttering the blog entries - new aspects visible, repetitive stuff still there, but now only if you click on the triangles. Very similar then the practical idea of mixing the 4 or 5 things I now regularly put on my muesli for the next few days in the glass I put it in anyway (tiger nut powder, lupine flour, cashews, barberries). But midday after :ping_pong: I started de-cluttering again…

Starting DAO again before meals, need to use it up quickly anyway and that way I might be able to eat white beans and walnuts again without my tongue burning. It worked, 80g baked beans last night, but hardly any tongue burning…

New Habits: Click for details of those I'm still working on. (7th: 1 less)

:ambulance: Back: More exercises (:white_check_mark:) hanging (:white_check_mark:) massager (:white_check_mark:) HWB (:white_check_mark:), typing lying on front (:white_check_mark:)
:ambulance: B-supps after getting up, then back, teeth, praps shaving. :x:/(:white_check_mark:)
:ambulance: Use daylight lamps in the mornings now it’s darker. (:white_check_mark:)
:ambulance: Try taking my antihistamine at 18:00. :x:/(:white_check_mark:)
:ambulance: Bed earlier. :x:/(:white_check_mark:)
:ambulance: Note thoughts and emotions (ACT) :x:/(:white_check_mark:)
:ambulance: Clean tooth space :x:/(:white_check_mark:)
:ambulance: More leg stretches. :x:/(:white_check_mark:)
:soon: Update “supps” below! :x:
:soon: Encapsulate more! (:white_check_mark:)

Today's FM symptoms unchanged from WPI 11 & SSS 9, except....: 0 (click for details)

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10(-50)%, stiff 10-20%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (85%), insomnia 3 (10%), fog 2 (10%), headache 0 (0%), GI 1 (10%), depression 0

Triggers & resulting Symptoms

JAB#3 (on Nov 7th) causing MCAS / histamine problems, esp. energy narrowed to 15-20%. 7th: Better (TT 5:1) until flustered by having to get something to the post, making art exhibition very difficult, better after rest.

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. Up: 3rd, Down: 4th. Up: 5th.
Unsure: 6th. Sinuses after 80g of baked beans, but not a 2nd time after 70g whilst having taken my antihistamine again, after the 3rd time tongue burning (left side) → for 12h → 24h,… plus eating half? a walnut at 2 by accident, my tongue tip started burning a few minutes later too. 7th: Up (TT 5:1) until flustered by having to get something to the post, making art exhibition very difficult, better after rest.

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): 8h03, up 3x (19'), deep, last 1.5h bit less deep. ✅ ➔ Feeling 90% well, Ache 1 of 7 ✅, getting up: 80%/1 ✅. Nostrils 5% stuffy 20% of the night: It'd be interesting if DAO or the masterwort or Hexacyl is improving the stuffy nostrils.

A3 A4 teeth cold shower p0 Sleep 0:15- Why not 21:00? 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
2:05 6’ 90%/1/15% p1 st1 sip fw2’ cough deep air A5 cream
(nostrils0% nauseous0% stomach10% sinuses0% headache0% sore throat5%)
3:45 6’ 90%/1/15% p1 st1 sip fw1’ cough deep air teeth cream
(nostrils0% nauseous0% stomach0% sinuses0% headache0% sore throat5%)
6:50 7’ 90%/1/15% p0 st1 sip fw1’ cough deep B
(nostrils5% nauseous0% stomach0% sinuses0% headache0% sore throat5%)
-8:32 B1-4 0‘ in sun, stools firm?
Sum: 8h32-10-(6+6+7=)19 = 8h22-19 = 8h03, up 3x (19’), deep, last 1.5h bit less deep.

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2 ➔ TT 3:0 (picking up 0 balls) ➔ 70%/5 :x:, de-cluttering/moving 4h, then housework without much break ➔ 80%/3 :x:. Strange how table tennis drained me much more than the rest today.
ACTIONS ➔ PAINS :white_check_mark:: except GI :white_check_mark:, esophagus: have to be very careful most of the time, block in the evening :x:, pee pain: 0xp1-2 :white_check_mark: lower back unrest :white_check_mark:, thumb tip (:x:)

Click for details on Touch, Covid, Weather, last seizure Jan 5th, last esophagus block Jan 7th, last jaw pain Jan 6th.

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 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 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.

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.

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”) Dec 6th+20th: Jan 7th: 2x2 drops + 2x1 drop each. Jan 6th: Started masterwort & Hexacyl, starting much lower than she suggested with 2x1 drop each.
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): 87' (RR: 0)

white_check_mark: airing 5x2’, cold shower 1x(10’), cream/oil fc/ey/hd/ft 8x1’, teeth 1x2’, HWB 0x3’, breath exercises 3x1’, Y. Nidra 10’, massage gun 1x3’, daylight lamp/sun 6x5’, plantar/calf stretch x1’, acupressure 0x1’, palpate 0’, belly 0’, back 5’, !!aloe vera 0x1’, twist-stretch 2x1’, yoga/stretching 2x1’, hang 2x1’. hunchback-pillow 0’, neck 1+ 2x1’, RR:
Combine: next?
:x: wart x1, 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 8th: Taking most of what the practitioner "ordered" now/soon and everything else adjusted, up and running, hadn't got round to quite a few. Yet to try: Creatine? ATP again, encapsulated, for phosphate?? PLANNED/TAKEN TODAY: click for details:

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.
Postponed lunch supps till 5, so everything later.
“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 seeds.
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)
“after muesli” C5 2xglutathion
xylitol
nux
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
“after lunch” D3+ 2xglutathion
+xylitol
“16:15” teeth
“16:15” preparing pills: 5x to encapsulate.
“16:15” nux
A1 “18:00”
E “17:00” (“meal/acids+2h”) Ellag#2, Fev/MSM#3 Qc#4, Ro#2, Rs#2.
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. 4-5xGa: a2,a3,a4,C,D, Gi: C,D0,D Glutamin: A3 (0c1) Glutathione: B. Hon:A2.A3. Oliv C,D. pine: C,D. Qc: A1.A3.B.D 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) B: ALA, Sa, 2Th C: EGCG&Fev/MSM&Sily, 2xeleu, Gly, PEA, Ru, DAO before risky meals? monkfruit usually evenings, aloe vera. D3 saturdays. (A2:0Se, up soon)
TALLIES - correct Nov 25th:
A1=6+1 Pf#1 Qc1#1, Lut, 2MgMal, MgThreo… + myo-inositol + (DAO?)
A2=14+1 2vB2#1 "2"xvB3, vB5#1, 2xCr#1, Pf#2, Ga#1, Hon#1, Cu, Q10, 2TMG#1 + Rup.
+Ω3/PQQ/aloe +monkfruit +apigenin
A3=5 Pf#3, Ga, Gltm, Hon, Qc#3
A4=1 Ga, A5=1 Ga. A6 = 1-2 psyllium.
B=11 Qc#3, Ro#1, Rs#2, ALA, 2xSa, 2Th, EGCG, Fev/MSM, Sily + (DAO?) = 11/
C=23 vB2#2 "2"xvB3#2 vB5#2 3xvC#1 3xCr#2 Ga#4 Gi#2 Ol#1 Pin#1 TMG#2 alpha-GPC 0x2xEleu 2xMgGly hup PEA Rut = 23, -2 eleuthero. -1 huperzia. = 20/
C5=2 2Gltt
D0=2 Ell, Gi + (DAO?)
D=15 vB2#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/
D3=2 2Gltt
E=4 Ell, Qc#4, Ro#2, Rs#2. Fev/MSM#3
B12 4-monthly, D3 Saturdays.

Development

Lessons in self-care #538 De-cluttered for 4h, much too much, even postponed lunch, so not eating or taking supps properly. But…
Reasons to be cheerful #575 I’m soon thru with all the de-cluttering & moving. And still feeling OK.
Reasons to be cheerful #576 Cat-sitting for 2 weeks was quite nice, but glad it’s thru too.

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