JayCS’s Fibro Blog

Symptoms & Treatments
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2022-11-26, Saturday - Energy 20% (but slow) / Sleep 90% / Feeling 85%-ish / nausea “0%”, but only if I move slow all the time, otherwise 10-20%.

Successes:
:trophy: Back exercises first thing.
:trophy: Pushed thru a lot, slowly, but steadily: Is it that I’ve adapted to my condition perfectly?
:zap: Gastritol after psyllium at night?
New Habits: :new: (26th: 1 more, up to 3)
:ambulance: 5’ Worry time (:white_check_mark:) 5’ plan time (:white_check_mark:), 1-2h me time (:white_check_mark:). :zap: Friday evening this might have helped, and I did go about a late meeting carefully and only short, and avoided any confrontation. Problem was I caught glimpse of a mail by a ‘mediator’ later on which I thought may be a nice solution, but it actually stirred it up again, cos it contained a 3rd excuse and no real reason, which’d satisfied my wish to do something more. But made sure to put my ideas down in writing, and after sleeping it over was able to reduce it to a sensible constructive focus and send off mails to the person concerned and mediator too, so we now all have some peace.
: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: :zap: The door bar for hanging keeps sliding down every 3-4 minutes of use, so I tightened the nut even more, which didn’t help but now I can’t get apart at the moment. However every time it slides I can angle the bar out of the door frame and squash it in in a higher position again, maybe that’s the best possible workaround.
:ambulance: Gastritol together with psyllium at night might prevent stomach problems.

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 of 12: Fatigue 3 (80%), insomnia 3 (10%), fog 2 (10%), headache 0 (0%), GI 1: strong stomach ache after psyllium (10-80%), depression 0

Triggers & resulting Symptoms

JAB#3 (2022-11-07)/MCAS/histamine-Symptoms/Triggers/Treatments (click for details): "10%" altogether. Still extra GABA and antihistamine. Sinuses, paranasal and frontal with headache 5% at night & sore throat 5% at night, nausea 0-10%, white lips 30-50%, pale face 30%, "ill ache" off and on 0-10%, sliding around indoors (stiffness, fatigue & nausea) 0-10%, cold intolerance 10% (cold shower: yes, but hot water bottles, longjohns and hoodie at night, trying to go without long johns part of the daytime inside, when moving a lot). Nov 17th 15:00 breaking down 'ill'. 18th directly before getting up energy suddenly down from 20 to 10%. 10th/11th day after the jab. Nov 20th...: energy and well-feeling picking up again, despite often overdoing it a bit.

Jab#3 2022-11-07 at 12:00 (H1 2nd gen. antihistamine 4h before it and every evening)
Increasing: Nope, still not.
nausea: 0-10%
sinuses: 0-10% (headache) (nostrils)
“skating”: 0%-10%
white lips: 60%
eyes: 40%
specific ill Ache: 0-20%
cold intolerance: 0%
sore throat: 5%

SLEEP (click for details): 7h30, up 4x (30'), all deep, managed to blend out the problem. ✅ ➔ Feeling 80% well, Ache 1 of 7 ✅, getting up: 80%/1 ✅. Nostrils 20% stuffy 20% of the night.

A3 teeth cold shower p0 Sleep long johns 1:10- Why not 21:00? Cos of music problem with C.
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
2:55 5’ 80%/1/15% p1 st1 sip fw1’ deep air A4 HWB#2
pyjama trousers over long johns, hoodie over top against cold.
(nostrils0% nauseous0% Sinuses0% headache0% sore throat15%)
5:24 10’ 80%/2/15% p0 st1 sip fw4’ deep air PSYLLIUM
(nostrils0% nauseous20% Sinuses0% headache0% sore throat15%, stomach 30%)
6:25 5’ 80%/1/15% p0 st1 sip fw1’ deep plugs- cream gel A’sYoNi
(dito)
6:55 5’ 80%/2/15% p0 st1 sip fw1’ cough deep air … cream gel HWB#
(nostrils20% nauseous20% stomach60% Sinuses5% headache5% sore throat5%)
-9:10 80%/2/15% p0 st1 sip deep air A4 -plugs cream gel
(nostrils10% nauseous20% stomach80% Sinuses5% headache5% sore throat5%)
9:15 B1-4 ‘ in sun, stools firm?
Sum: 9h10-1n10-(5+10+5+5=)30 = 8h-30 = 7h30, up 4x (30’), all deep, managed to blend out the problem.

ACTIVITIES (aim: 40% energy) ➔ ACHE: quite long housework, slowly, often on knees ➔ 90%/1 :white_check_mark: moving stuff around, going up steps and down, but very slowly, and if possible on my knees ➔ 90%/1 :white_check_mark:
Pushed thru a lot, slowly, but steadily: Is it that I’ve adapted to my condition perfectly?
ACTIONS ➔ PAINS: except GI :x: at night from psyllium - new experiment noted above, wind pain in the evening, but a few basics helped, 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: Nov 22nd (from cold yogurt+supps). Nov 20th.

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 dysbalance.
Alternative health practitioner: appt. on Dec 6th.
3rd jab on Nov 7th… :horse_racing:

SELF-PHYSIO (click for details): 104' (RR: 152/94//70 -> 136/87//65)

white_check_mark: airing 5x2’, cold shower 1x(10’), alternating shower 0x(10’), cream/oil fc/ey/hd/ft 5x1’, teeth 3x2’, HWB 2x3’, breath exercises 4x1’, Y. Nidra 20’, massage gun 0x3’, plantar/calf stretch 3x1’, acupressure 0x1’, palpate 0’, belly 3’, back 10’, !!aloe vera 0x1’, twist-stretch 1x1’, yoga/stretching 1x1’, sun 2x5’, hang 5x1’. hunchback-pillow 0’, wart x1. neck 1+ x1’, RR: 5x2
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 19th (46 supps): Supp costs:~428€/m (25th): 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.

REGULAR as of Nov 18th (46 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) 2, 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!
Often didn’t note when I took what, but it was all appropriately apart, just some later.
+0.25 GABA?
0 “16:15” preparing pills
“18:15” A1 PF#1 2 mg mal, mag threo. 1Lut.
5’ empty = praps-worry time.
“18:30” myo-inositol (try → every evenings) + teeth
“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.
“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
/3:00 “23:00” A4 300mg GABA + teeth
1 Psyllium.
/9:15 B=11/ 0’ in sun “07:00” ALA, Ro#1, Qc#3 Rs#1 2xSAM-e EGCg + Fev/MSM + Sily +2The Back exercises. Soak seeds.
Teeth.
9:50 Meal ’ in sun. aloe.
10:20 ’ 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 2xEleu Hup 2gly PEA Rutin = 23. (vit.D3 1/wk) 20th: ONLY 22 IN THERE, WHAT’S MISSING? A TINY ONE?
“after muesli” C5 2xglutathion
0 xylitol
10:50? nux
0 teeth
/13:10 “11:00” D1 (ex-C4) + Teeth (+2h/) gi#2 1 Ellagic acid#1
/14:50 “14:00” 0 Meal ’ in sun +aloe
?15:20 “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
?15:30 “after lunch” D3+ 2xglutathion
+xylitol
“16:15” teeth
“16:15” preparing pills
“16:15” nux
/20:00 A1 “18:00”
19:30 D4 “17:00” (“meal/acids+2h”) Ellag#2, Qc#4, Rs#2, Ro#2
/20:00 myo-inositol
20:40 Eat + 0aloe + ?PQQ+Ω3
/22:00 A2 + apigenin & heating down
/1:30-

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. 2xeleuthero. 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 2xEleu 2xMgGly hup PEA Rut = 23, -1 eleuthero. -1 huperzia. = 21/
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 #492
Reasons to be cheerful #520 Pretty normal day actually, pushing thru but under the limits and very slowly and often on hands and feet or knees, nausea if too fast, but energy there if I move slow, and clear head today - so managed lots effectively.