JayCS’s Fibro Blog

Symptoms & Treatments
1052

2022-12-24, Saturday, Holy Night! - Energy 18% / Sleep 90% / Feeling 80%-ish / nausea 0%, fog 10%

Looking for my Xmas faves I remembered Bethlehemian Rhapsody from 2 years ago, and from the makers of that now “Hotel Can’t Afford Ya” (whilst “Pathway to Heaven” would have to be bought on their main site. I do think it fair to donate, quality stuff!)

Successes: :trophy: :zap: Learnt: :student: Lots of supp adjustments from the new recommendations.
New Habits: :new: (20th: 1 more)
:ambulance: 5’ worry time (:white_check_mark:) 5’ plan time (:white_check_mark:), 1-2h me time (:white_check_mark:)
: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. :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. :white_check_mark:
:ambulance: Bed earlier. :x:
:ambulance: Note thoughts and emotions (ACT) :x:
:soon: Update “supps” below!

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10-50% from 1h outdoor service sitting with hot water bottle and more, stiff 10-20%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (82%), insomnia 3 (10%), fog 2 (10%), headache 0 (0%), GI 1 (10%), depression 0

Triggers & resulting Symptoms

JAB#3 (on Nov 7th) → MCAS / histamine:
Today: “10%” altogether = 18% energy for under 45’, then white lips & pale face, but can still push on if I go slow.
Night ‘histaminey’ problems (with +.25g GABA): nostrils 5% nauseous 0% stomach 0-10% sinuses 0% headache 0% sore throat 10%.
Day condition: Nausea 0%, white lips 30%, pale face 30%, “ill ache” off and on 0%, sliding around indoors (stiffness, fatigue & nausea) 10-20%, cold intolerance (cold shower yes, but long johns day and night, plus hoodie at night) 30%. Managed to minimize sneezing & sinuses despite being in the mouldy cellar room yesterday by mask masking. Manage to keep exhaustion down by moving very efficiently.
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.
“WINNING” 2nd - 6th: Dec 2nd-4th: Winning TT, playing easily, 5 games (with break, very cold), since then 4-5 games every day, winning most.
Dec 6th: 1.5h appointment, 2.5h grandchild, 2x40’ garden (slow), TT moderate.
“LOSING”: Dec 7th-8th: Losing TT & energy, but praps cos of too little sleep? However burning tongue from white beans = histamine…
“WINNING” 9th-14th: 9th ff: TT winning again.
11th midday, 12th ff: Winning, but overall in bad condition.
13th-14th: Winning easily 4:0, and slow energy for 4h!
“LOSING” 15th-21st…: 15th: Losing 2:4 and 16th 0:5, maybe doing too much, too little sleep, missed 1 small GABA dose. 17th 1:3, hurting from game 2, despite sleeping more. 18th 2:4, hurting early again.
“WINNING” 22nd to 24th winning roughly 3:1.
I should be able to work out a pattern of how I win/lose soon, at the moment it seems week-wise.
Treatments: Antihistamine, and extra GABA from Nov 29th.

SLEEP (click for details): 7h02, up 4x (55'), deep 5h, making plans ✅ ➔ Feeling 90% well, Ache 1 of 7 ✅, getting up: 90%/1 ✅. Nostrils 5% stuffy 100% of the night.

A3 A4 teeth? cold shower p0 gel HWB Sleep 1:55 Why not 21:00? 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
3:30 5’ 90%/1/15% p0 st1 sip fw1’ deep air cream
(nostrils5% nauseous0% stomach0% sinuses0% headache0% sore throat10%)
4:58 5’ 90%/1/15% p0 st1 sip fw1’ deep air cream HWB#2 A5 (same)
6:35 35’ 90%/1/15% p0 st1 sip fw1’ deep air cream (same)
9:03 10’ 90%/1/15% p0 st1 sip fw1’ deep air cream (same)
-9:52 9:05 B1-4 0‘ in sun (same)
stools firm?
Sum: 9h52-1h55-(5+5+35+10=)55 = 7h57-55 = 7h02, up 4x (55’), deep 5h, making plans

ACTIVITIES (aim: 40% energy) ➔ ACHE: ➔ TT 3:0 ➔ 90%/1 :white_check_mark: (only stopped cos had to buy something my wife needed before the shop closed for Christmas) ➔ 0%/ :x:
ACTIONS ➔ PAINS: except GI :white_check_mark:, esophagus: small blocks from pills needed massager :white_check_mark:, pee pain: 1xp4-5 after the outdoor service increased urge :x:, lower back unrest :white_check_mark:
Touch: :white_check_mark: Covid: :white_check_mark: Weather: Indoors :white_check_mark: Outdoors :x:: One hour outdoor service with long johns und and rain legs over jeans, a hot water bottle, gloves, 3 loop scarves, thickest jackets, still legs, arms and face, esp. sinuses hurt. How could I move in that sort of situation, like I do when I play table tennis? Fairly cold, but damp.
Last focal seizures: Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 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. But a few times from the cold Ache outdoors.

Treatments

Bloods at cardio Dec 9th: Homocystein a bit high, continue B3 and B2, phosphate not that bad. Leukocytes low! CK, muscular, too high, praps fibro?
Alternative health practitioner Dec 6th+20th: Haven’t ordered yet, but working at things a bit and inside, and it’s settling, partly for, partly against.
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 quite often that tried #33 22nd Dec.
3rd jab on Nov 7th… :horse_racing:

SELF-PHYSIO (click for details): 104' (RR: 0)

white_check_mark: airing 5x2’, cold shower 1x(10’), cream/oil fc/ey/hd/ft 10x1’, teeth 2x2’, HWB 4x3’, breath exercises 4x1’, Y. Nidra 0’, massage gun 3x3’, daylight lamp/sun 4x5’, plantar/calf stretch 7x1’, acupressure 0x1’, palpate 0’, belly 3’, back 10’, !!aloe vera 0x1’, twist-stretch 3x1’, yoga/stretching x1’, hang 2x1’. 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’.

Pretty good supp discipline today, without having to write down when I’ve taken them. Only forgot A3 & apigenin Saturday evening until 1, distracted by all the presents I got and gave my wife in the evening. Lot easier just taking 1 glutathion before the first meal of the day (“B”) instead of after the 1st & 2nd meal… 'Bout time I updated them, but there will be quite a few further changes in the next 2 weeks as well:

Supps Nov 27th (45 supps): Supp costs:~421€/m (27th): 24th Dec: Need rutin (Big A.) again, of the practitioners recommendations 1) probably not ordering masterwort / Imperatoria ostruthium. 2) ordering Hexacyl (Sulfur D4, Lycopodium Ø, Berberis Ø), 3) following/parallel Bitter herbs, 4) Steirocall comp. (for "arthrosis" & bones) 5) upping pantothenic acid from 2 to 3, 6) instead of getting the glutathion activator of which I'm already taking almost everything in more fitting doses except manganese now new: B9 as 5-MTHF and upping MSM in Feverfew slowly from 1 to 3, but reducing glutathion 4x250 to 1, and before meals like it says everywhere else, not after like it says on this tub. 7) instead of taking Pro Mucosa by Tisso I prefer to add at most biotin (B7) and for the intestines the (fig) enzyme ficin (some say similar to pepsin & trypsin), altho I only reacted to enzymes like NADH & serrapeptase for a few doses, but I already take everything else in it. 8) Received & taking chlorella. Dec 12th I think it was I finally sorted out: Vit.C not with copper, so Cu in the evenings and vit. C the meals before, 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.
“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
“0:00” psyllium / medicinal clay
“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 + Sily +2The Back exercises. Soak seeds.
Teeth.
Meal ’ in sun/lamp. aloe.
’ in sun/lamp 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)
“after muesli” C5 2xglutathion
xylitol
nux
teeth
“11:00” D1 (ex-C4) + Teeth (+2h/) gi#2 1 Ellagic acid#1
“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
/D4 “17:00” (“meal/acids+2h”) Ellag#2, Qc#4, Rs#2, Ro#2
#/A1 “18:00”
/myo-inositol
/19:00 Eat + 0aloe + /PQQ+Ω3
/0:55 A2 + 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 webinars on lipids Nov 15th, supps on Dec 2nd - still need to get round to that, the fibro webinar transcripts and the MCAS summit before that, as well as reading Murphree’s fibro book, might get a newer edition of that.Lessons in self-care
Lessons in self-care #520 Moving carefully & efficiently seems to be my secret of how I push thru longer despite still less than “20%” energy. This may be changing the meaning of what “20%” means. It still means being able to do only 2 hours of activity in a fairly normally way, but as I’m reducing speed & exertion to 70%, I can double or even treble the length without too much of a backlash.
Reasons to be cheerful #556 As a special Christmas treat “our” shy European green woodpecker, the one that’s being calling around in our area this autumn, but never showed himself, spent half an hour on the roof of a small building in the garden next door, so we could watch him while eating lunch, as well as our magpie on the balcony.