JayCS’s Fibro Blog

Symptoms & Treatments
1030

2022-12-02, Friday - Energy 20% / Sleep 90% / Feeling 80%-ish / nausea 0%, fog 25%

Successes:
:trophy: Again managing to slowly push thru the fatigue and occasional tougher ache.
:trophy: Getting my knuckles & lips smoother again using all my creams all day & night.
:trophy: Got sinuses etc. down again, with better supp (esp. GABA) timing.
:trophy: I may be getting a hold back on my esophagus by chewing food (even?) better (again?) and gulping liquids with each pill, and esp. watching the brown pills.
:zap: Quite a bit going on in my head, but it’s not ordered yet.
Learnt: :student: In an RSM supps meeting this week, which I’m now watching as a live stream, Hans Verhagen makes it seem on a slide that taking B3 in amounts high enough to reduce cholesterol will definitely cause harm to the liver, which is why physicians need to keep it under control, bit scary, together with using TMG. But the rest of it is “encouraging” to calculate the risk vs. the benefit, by saying it’s necessary to do so.
New Habits: :new: (27th: 2 more again)
:ambulance: 5’ Worry time (:white_check_mark:) 5’ plan time (:white_check_mark:), 1-2h me time (:white_check_mark:)
:ambulance: Lower 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: Gastritol &/or fennel tea with psyllium for night stomach? (:white_check_mark:)
:ambulance: Close all powder tubs and put all dose tabs back after capsule “lab”. :white_check_mark:
:ambulance: Note empty encapsulated tubs on ToDo ‘hub’, do earlier. (:white_check_mark:)
:ambulance: Minimize oat milk, cos of heartburn (:white_check_mark:).
:ambulance: Need to quickly order B2 - but which one?!

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10(-30)%, stiff 10%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (80%), insomnia 3 (10%), fog 2 (10-20%), headache 0 (0%), GI 1 (10%), depression 0

Triggers & resulting Symptoms

JAB#3 (on Nov 7th) → MCAS / histamine:
Today: “5%” altogether = 20% energy for under 45’, then white lips & pale face
Night ‘histaminey’ problems: 8:00-9:00 (with GABA from 29th on): nostrils 5% nauseous 0% stomach 10% sinuses 10% headache 0% sore throat 5%.
Day condition: Nausea 0%, white lips 20%, pale face 20-30%, “ill ache” off and on 0%, sliding around indoors (stiffness, fatigue & nausea) 10%, cold intolerance (cold shower yes, but long johns day and night, plus hoodie at night) 30%.
Tendencies:
Nov 17th 15:00 breaking down ‘ill’.
Nov 18th, directly before getting up, energy suddenly down from 20 to 10%.
Nov 20th: energy and well-feeling picked up again, despite often overdoing it a bit.
Nov 23rd: Before I was winning at table tennis all the time, from now clearly losing all the time, except 29th. But ~20% energy is there for up to 45’, then I break down with green-grey face & white lips thru activities incl. socializing."
Dec 2nd: Winning TT, playing easily, 5 games (with break, very cold).
Treatments: Antihistamine and extra GABA, adding more from 29th.

SLEEP (click for details): 8h26, up 3x (24'), 7h deep. ✅ ➔ Feeling 80-90% well, Ache 1 of 7 ✅, getting up: 80%/1 ✅. Nostrils 0% stuffy 100% of the night.

A3 teeth cold shower p0 Sleep 23:50- Why not 21:00? Sorting doc reports.
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
1:05 10’ 90%/1/15% p0 st1 sip fw1’ deep air A4 (plugs) cream HWB#2
(nostrils0% nauseous0% stomach5% sinuses0% headache0% sore throat5%)
4:05 7’ 90%/2/15% p0-1 st1 sip fw1’ deep air A5 plugs out cream
(nostrils0% nauseous0% stomach5% sinuses0% headache0% sore throat5%)
6:55 7’ 80%/1/15% p0 st1 sip fw1’ deep air cream gel
(nostrils0% nauseous5% stomach10% sinuses10% headache0% sore throat5%)
-8:40? 8:50? B1-4 0‘ in sun, stools firm
(nostrils0% nauseous5% stomach10% sinuses10% headache0% sore throat5%) (?)
Sum: 8h40+10-(=10+7+7) = 8h50-24 = 8h26, up 3x (24’), 7h deep.

ACTIVITIES (aim: 40% energy) ➔ ACHE: ➔ TT 4:1 ➔ %/ :x: ➔ 0%/ :x:
ACTIONS ➔ PAINS: except GI :white_check_mark:, esophagus :white_check_mark:, jaw x5’’ :white_check_mark:, pee pain: 0xp1-2 :white_check_mark: lower back unrest :white_check_mark:
Touch: :white_check_mark: Covid: :white_check_mark: Weather: Indoors :white_check_mark: Outdoors :white_check_mark:.
Last focal seizures: Nov 21st: 2x
Last esophagus blocks: 30th severe again twice, first moderate, second severe, both from cold stuff (yogurt and aloe vera, but a few supp pills came out again too, there’s often a dark brown one which is a suspicious lump), 29th fairly severe, but dissolved it quick, later moderate, dissolved it fairly quick. 28th slight, Nov 24th only slight, but definitely due to cold liquids. Nov 22nd (from cold yogurt+supps). Nov 20th.
I’ll now be going to hospital for a day or two for dilation and re-diagnosing. I think hospital will actually be OK at the moment, as I am sleeping well.

Treatments

Docs:
Online course ACT (acceptance and commitment therapy) starting Oct 24th, about 2h per week.
Chinese Acupuncturist - Session #32 on 4th., after 14 days :white_check_mark: “Energy still pretty stable at 20%, despite jab-nausea…”
Session #33 indefinite. As my energy is still fairly high, considering, I don’t want to risk more cortisol bringing a disbalance at the moment.
Alternative health practitioner: appt. on Dec 6th.
3rd jab on Nov 7th… :horse_racing:

SELF-PHYSIO (click for details): 90' (RR: 0)

white_check_mark: airing 5x2’, cold shower 1x(10’), alternating shower 0x(10’), cream/oil fc/ey/hd/ft 20x1’, teeth 3x2’, HWB 2x3’, breath exercises 3x1’, Y. Nidra 0’, massage gun 2x3’, plantar/calf stretch 3x1’, acupressure 0x1’, palpate 0’, belly 3’, back 10’, !!aloe vera 0x1’, twist-stretch 5x1’, yoga/stretching 5x1’, sun 0x5’, hang 3x1’. hunchback-pillow ’, wart x1. neck 1+ x1’, RR:
Combine: next?
:x: 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 Nov 27th (45 supps): Supp costs:~421€/m (27th): 2nd: order B2! and eleuthero etc. 27th: 0 eleuthero for a time. 22nd: Try less psyllium at night in almond milk: then pectin? 20th Checked & corrected the pill amounts per tub now that I'm simplifying the system for preparing them.... still differences. Nov 19th: Pill intakes now in tubs. Nov 19th: Vit.C not with copper I found a note, so Cu in the evenings and vit. C the meals before till I get that sorted (4th: +Cu for high dose vit. C again for 8 weeks from Nov 4th). Nov 24th: B2 3x500 (max 1.5g)! 24th: B3/Niacin/nicotinic acid powder1.2, 1.2, 1.0g (evening less). 7th: Check fisetin. 4th: Energy better since restarting quercetin & feverfew. New idea: Creatine? ATP again, encapsulated, for phosphate?? PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, mum, NAC 1*.5g, NADH, Rib, Se, Sr, Zn. Nov 27th: 0 eleuthero

REGULAR as of Nov 27th (45 supps: R-ALA .2g, aloe vera juice 50+ml/d, alpha-GPC 1x150mg, apigenin 1x50mg, vit. B2 3x400mg, vit. B3/Nia 2x0.8+0.6g, vit. B5/Panto: 1-3x.5g vit. B12 1x5mg/4m, vit. C up to 3x2x.5g, L-carnitine (Cr) 8x0.6g, copper (Cu) 2mg, vit. D3 20.000 IE = 500mcg, + vit. K2 (MK7) 200mcg, DAO before meals, EGCg 1x(50%, incl. L-theanine?).5g, Ellagic Acid (Ell) 2x.2g (+43mg vit. C), eleuthero (eleu) 0x2, Feverfew (fev) .4g (+.2g MSM), Fisetin (fis): 0x196mg. GABA (Ga): back to 3x0.3g+2x.6g=2.1g, ginkgo (Gi) 3x168mg, Glutamin (gltm, glu): 0.6g, Glutathione (gltt) 4x250mg, Hononkiol (Hon) (2%)x2x.4g=16mg, huperzia (hup) 1x0.2mg, Luteolin (lut) .2g, Ω3 1x5mg, Magnesium Glycinate (Mg gly) 2x50mg, Malate (Mg Mal) 2x45mg, Threonate (Mg threo) 50g, monk’s fruit 0.1g, myo-inositol 1x1g/1!d, olive leaf extract (oli) 2x.75, P5P (= vit. B6) 0x27mg, Levagen±PEA 1x0.4g, Psyllium (Ps), passiflora (Pf) 3x.35g, pine bark (pin) 2x.5g, PQQ 1, CoQ10 (Q10)(ubn) 1x.1g, quercetin (Qc) 4x.5g, resveratrol (Rs) (50%) 2x.4g, rhodiola (Ro) 2x.35g, Rutin (ru): 1x522. SAM-e (Sa) .1g, Silymarin (Sil) (80%) 1x.5g (+83mg L-cholin), L-theanine (The) 2x.2g (+.15g polyphenols), TMG: as much as B3.

What-when-details: Updated Nov 20th.
EARLIER!
+0.25 GABA?
/19:00 “16:15” preparing pills
/19:00 “18:15” A1 PF#1 2 mg mal, mag threo. 1Lut.
0 5’ empty = praps-worry time.
0 “18:30” myo-inositol (try → every evenings) + teeth
21:00 “19:30” A2=12+1 B2#1 "2"xvB3 B5#1 2Cr#1, PF#2, Qc#1. Cu .3gGABA CoQ10 (oil) TMG#1. Meal: 1PQQ, 5ml Ω3 & Hon#1. monk’s fruit. Cu with amino acids (to counteract high dose vit. C, but not together with vit. C?: 0(?)
Meal 20: ’ +xylitol. Back exercises. Soak seeds. aloe.
/22:00 “20:30” pre-A3 agigenin 1h before bedtime + teeth
“20:30” chamomile
/23:00 “21:00” A3 PF#3 0.3gGABA & .6glu & Qc#2 Hon#2 + 1 Rupafin or A2
/1:10 “23:00” A4 300mg GABA + teeth
2 Psyllium.
B=11/ ’ in sun “07:00” ALA, Ro#1, Qc#3 Rs#1 2xSAM-e EGCg + Fev/MSM + Sily +2The Back exercises. Soak seeds.
Teeth.
10:00-30 Meal ’ in sun. aloe.
/10:40 ’ in sun C=23/ with meal: vit.B2#2 2xvB3#2 vB5#2 3xvC#1 3xCr#2 .6GABA#4, gink#1, Oli#1 pine bark#1 TMG#2 alpha-GPC 0x2xEleu Hup 2gly PEA Rutin = 23. (vit.D3 1/wk) 20th: ONLY 22 IN THERE, WHAT’S MISSING? A TINY ONE?
0 “after muesli” C5 2xglutathion
0 xylitol
0 nux
0 teeth
13:00 “11:00” D1 (ex-C4) + Teeth (+2h/) gi#2 1 Ellagic acid#1
/15:30-16:20 “14:00” 0 Meal ’ in sun +aloe
/16:25 “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
/16:25 “after lunch” D3+ 2xglutathion
0 +xylitol
/20:00 “16:15” teeth
/20:00 “16:15” preparing pills: 5x to encapsulate.
0 “16:15” nux
20:10 A1 “18:00”
19:40 D4 “17:00” (“meal/acids+2h”) Ellag#2, Qc#4, Rs#2, Ro#2
20:10 myo-inositol
20:25 Eat + 0 aloe + 16:00 PQQ+Ω3
21:00 A2 + 21:00 apigenin & / heating down
eve:
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c. 2022-04-10, last: 2022-10-25?)

The day's 16 supp-compartments (10', plus 5' making capsules), Nov 20th

Pf: 1A1+1A2+1A3, vB2: A,C,D. vB3: 0,7gA2,0,8gC3,0,8gD3. vB5: A,C,D. vC:0A2+3C3+3D3 8Cr: 2A2+3C1+3D2, Ell: D0+D4. 4-5xGa: a2,a3,a4,C1,D2, Gi: C2,D0,D3 Glutamin: A3 (0c1) Glutathione: 2x"C5", 2x"D3+" (after meal). Hon:A2.A3. Oliv leaf extr:C1D2. pine:C1D2. Qc: A1.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: A1: 2xMgMal, Luteolin. MgThreo. myo-inositol (15’ before meal 1x/(2)d) A2: Cu (separate from P5!)+0P5+1xQ10 (->ubiquinone <150mg/d! atm ubiquinol). (A2:Ω/Pq:meal, A3: apigenin) B2: ALA. B3:Sa. B4: 2Th EGCG&Fev/MSM&Sily C1: alpha GPC. 0x2xeleuthero. huperzia. C2: 2Gly C3:PEA+Ru, DAO before risky meals? monk’s fruit usually evenings, aloe vera. D3 1x/wk.
(A2:0Se), (0NAC: A3, B1,C1,C3,D2)
TALLIES - correct Nov 25th:
A1=6+1 Pf#1 Qc1#1, Lut, 2MgMal, MgThreo… + myo-inositol + (DAO?)
A2=12+1 vB2#1 "2"xvB3, vB5#1, 2xCr#1, Pf#2, Ga#1, Hon#1, Cu, Q10, TMG#1 + Rup.
+Ω3/PQQ/aloe +monk’s +apigenin
A3=5 Pf#3, Ga, Gltm, Hon, Qc#3
A4=1 Ga
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
25th: -vB5#3: so only 14/
D3=2 2Gltt
E=4 Ell, Qc#4, Ro#2, Rs#2.
B12 4-monthly, D3 Saturdays.

Development

‘Research’ today: No.
ToDo: RSM Webinar on fibro on Oct 10th, on fatigue on Oct 25th, on lipids Nov 15th - still need to get round to that and the MCAS summit before that.
Lessons in self-care #496 Aloe vera bottle open 14 days, so put away the rest. :white_check_mark:
Reasons to be cheerful #527 Got some pain at around 5, but pushed slowly thru and it stopped again, WITHOUT rest!
Reasons to be cheerful #528 Tuesday I carried the old washing machine with someone else, today I got the new washing machine up on a table by myself - using leverage tricks, hardly any strength involved (could have, but I’d’ve needed too long to recover).
Reasons to be cheerful #529 Not only a 5th game of TT, and winning 4, but easily and even managed to pick up 1 or 2 balls without having to stop a while.