JayCS’s Fibro Blog

Symptoms & Treatments
1065

2023-01-06, Friday - Energy 18% / Sleep 90% / Feeling 80%-ish / nausea 0%, fog 10%

Successes: :trophy:/:zap:/Learnt:/:student: Only bits’n’bobs.
:-1: After a break of a few days I again have a painful injury on my right thumb tip which is taking ages to heal.
:-1: Very clear once again that 2x100g of baked beans makes my tongue severely burn/hurt for at least a day. Next time definitely try DAO beforehand!
:-1: Pee pain Friday evening (which makes my whole body Ache for 20’ after, which by the way it does most times I come from the toilet, pain or no… :grimacing: - it belongs to one of the activities that cause a lot of strain, first the urge build-up, then a short moment of relief, then the severe Ache after…).
New Habits: :new: (28th: 1 changed)
:ambulance: Before sleep: 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. (:white_check_mark:)
:ambulance: Note thoughts and emotions (ACT) :x:
:ambulance: Clean tooth space (:white_check_mark:)
:ambulance: More leg stretches. :x:
:soon: Update “supps” below! :x:
:soon: Encapsulate more! (:white_check_mark:)

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 (20%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (82%), insomnia 3 (10%), fog 2 (0%), headache 0 (0%), GI 1 (10%), depression 0

Triggers & resulting Symptoms

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). (Slightly warmer in January and de-cluttering letting me leave the long johns off in the daytime occasionally)
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.

Treatments: Antihistamine, and extra GABA from Nov 29th.

SLEEP (click for details): 6h30, up 3x (23'), all deep ✅ ➔ Feeling 80% well, Ache 1 of 7 ✅, getting up: 80%/1 ✅, strangely awake after only that short time. Nostrils 25/10% stuffy 40% of the night. After tepid showering a few hours before bedtime I tried going without a 2nd cold shower, however after less than an hour of dozing, my lower back unrest got intolerable, so did one (FCS).

A3, A4 teeth 0cold shower p0 Sleep 1:05- Why not 21:00? 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
1:49 12’ 60%/1/60% p0 st1 sip fw3’ deep doze cream LBU 60% → FCS#1
(nostrils0% nauseous0% stomach0% sinuses0% headache0% sore throat0% stools firm%)
3:35 7’ 70%/1/30% p0 st1 sip fw2’ deep air cream A5
(nostrils10% nauseous0% stomach0% sinuses10% headache0% sore throat15% stools firm%)
6:10 4’ 80%/1/20% p0 st1 sip fw2’ deep psyllium, itchy.
(nostrils25->10% nauseous0% stomach10% sinuses10% headache0% sore throat15% stools firm%)
-8:02 80%/1/20% p0 st1 sip fw2’ deep air cream B heating on
(nostrils25->10% nauseous0% stomach10% sinuses10% headache0% sore throat15% stools firm100%)
-8:02 8:10 B1-4 ‘ in sun, stools firm?
Sum: 8h02-1h05-(12+7+4=)23 = 6h57-23 = 6h30, up 3x (23’), all deep

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2 ➔ TT 2:2 (picking up 0 balls) ➔ 80%/2 :white_check_mark:, longer very slow cycle trip, cat-sitting a strain & yucky, cos the old cat had puked all over the flat ➔ 70%/3 :x:, garden & cellar ➔ 80%/3 :white_check_mark:
ACTIONS ➔ PAINS :white_check_mark:: except GI :white_check_mark:, esophagus: have to be very careful most of the time :x: , pee pain: 0xp1-2 :white_check_mark: , 1x3 :x: lower back unrest at night and back pain from bending over too much while de-cluttering :x:
Touch: :white_check_mark: Covid: :white_check_mark: Weather: Indoors :white_check_mark: Outdoors :white_check_mark:.
Last focal seizures: Jan 5th (wife scolding me for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last 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

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 Dec 6th+20th: The new stuff came today, masterwort and Hexacyl. Increasing with 2-3x1 drop/d, much less than she recommended. I don’t believe that the masterwort will do any good, I can’t see the sense in it.
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.
3rd jab on Nov 7th… :horse_racing:

SELF-PHYSIO (click for details): 2h26, also forgot in the last few days I regularly use the massage gun on my esophagus at the moment, almost daily (RR: 0)

white_check_mark: airing 5x2’, cold shower 2x(10’), cream/oil fc/ey/hd/ft 8x1’, teeth 1x2’, HWB 0x3’, breath exercises 7x1’, Y. Nidra 0’, massage gun 4x3’, daylight lamp/sun 6x5’, plantar/calf stretch x1’, acupressure 0x1’, palpate 0’, belly 1’, back 10’, !!aloe vera 0x1’, twist-stretch 10x1’, yoga/stretching 10x1’, hang 2x1’. hunchback-pillow 4’, 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): 28th Dec: Ordered Practitioner's #1) masterwort / Imperatoria ostruthium, #2) Hexacyl (Sulfur D4, Lycopodium Ø, Berberis Ø), #4) Steirocall comp. (for "arthrosis" & bones) (& umckaloabo), altho I'm not at all sure about any of these. Then 5-MTHF/folate & #7b) Hericium. And rutin. 27th Dec: Ordered another 2000 empty capsules, that makes 1000/m = 33/d (16€/m). 24th Dec: Need rutin (from Big A.) again. Practitioner's #3) following/parallel Bitter herbs, #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.
Fairly on schedule
“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 CoQ10d (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
A1 “18:00”
D4 “17:00” (“meal/acids+2h”) Ellag#2, Qc#4, Rs#2, Ro#2
myo-inositol
Eat + aloe + PQQ+Ω3
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 #536 Cat-sitting today was so yucky for the first time this stint I had to do some cleaning & un-cluttering at home.
Reasons to be cheerful #573 My wife’s feeling better at the moment, her openness at last brought more closeness, watched a fairy tale together in the evening.