JayCS’s Fibro Blog

Symptoms & Treatments
1120

2023-03-02, Thursday - Energy (slow) 16%

Sleep 90% / Feeling 80%-ish / nausea 0-10%, fog 10%
Successes: :trophy: :zap: Learnt: :student:

New Habits: Click for details of the 4 I'm still working on. Last change Jan 14th, plus repeating "gulp supps better" since Feb 27th.

:ambulance: Bed 23:30-8:30/9:00. (:white_check_mark:)
:ambulance: Gulp supps better. (:white_check_mark:)
:ambulance: Note thoughts and emotions (ACT) (:white_check_mark:)
:ambulance: More leg stretches. (:white_check_mark:)
:ambulance: Cold foods out of fridge 2h earlier than eating. (:white_check_mark:)

Today's FM symptoms unchanged from WPI 11 & SSS 9, except....: SSS +0 headache. Adjusted basic stiffness to st3 = 30% since Feb 24th 2023 (click for details)

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10-20%, stiff 30%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (84%), insomnia 3 (10%), fog 2 (10%), headache 0 (0%), GI 1 (30%), depression 0

Triggers & resulting Symptoms

JAB#3 (on Nov 7th) causing MCAS / histamine problems, esp. energy narrowed to (10-)15-20%, decreased to mostly 10-15% in January. From Feb 3rd on: 10% energy. Cold tolerance good, just not my fingertips. Feb 26th: sinuses upon waking up 9:20....Energy up to 20% from T4.

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, 4th. Up: 3rd, 5th. Both: 6th-11th - sinuses, tongue, lips, runny, DAO helping. Cold: 12th. 13th: GI: HP supps? 14th: B3-Flushing up!? 15th: Runny nose, 16th-21st & 25th-26th…: Tongue off and on. 23rd-25th: Sore buttock (& leg) muscles like after the jabs since 23rd. 26th: Cold, pain & fatigue, energy from 18% to 10% since 19th. 27th: Bad. 28th: Bad to better. 29th: OK, considering. 30th: Foods slightly histamine-y. 31st: Still no appetite. From Feb 3rd on: 10% energy. Cold tolerance good, just not my fingertips. 8th: Bit of tongue after red beans, but OK. Feb 12th 6:00: Stronger histamine-y symptoms and stomach pang. Feb 15th: strong headache evening and night probably from red beans without DAO, praps also the sinus burning. Feb 18th: More energy for the first time. Very red lips, looking inflamed, go white when I press them together. From Feb 19th on: back down to 10% energy, everything else fairly OK, incl. at night, incl. cold tolerance, incl. fingertips, but lips’d be white if they weren’t chapped and inflamed. Feb 24th: Energy up to 14% due to specks of T4. Feb 26th: sinuses upon waking up 9:20… Energy up to 20% from T4.

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): 8h11, up 6x (62'), all deep ✅ ➔ Feeling 80% well, Ache 2 of 7 ✅, getting up: 80%/1 ✅. Nostrils 5(-10)% stuffy 100% of the night. Changed basic stiffness to st3 = 30%.

A3 teeth/ cold shower0 p0 Sleep 1:00- Why not 21:00? Tidied more! 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
2:25 5’ 80%/2/15% p0 st3 sip fw1’ cough0 deep/ air/ A4/ plugs0 cream/ gel0 HWB0
(nostril/s5/0% nauseous0% stomach0% sinuses0% headache0% sore throat0% stools0 loose%)
2:25 5’ 80%/2/15% p0 st3 sip fw1’ cough0 deep/ air/ A5/ plugs0 cream/ gel0 HWB0
(nostril/s5/0% nauseous0% stomach0% sinuses0% headache0% sore throat0% stools0 loose%)
3:00 5’ 80%/2/15% p0 st3 sip fw1’ cough0 deep/ air/ A6:0 plugs0 cream/ gel0 HWB0
(nostril/s5/0% nauseous0% stomach0% sinuses0% headache0% sore throat0% stools0 loose%)
4:30 5’ 80%/3/15% p0 st3 sip fw1’ cough0 deep/ air/ plugs0 cream/ gel0 HWB0
(nostril/s5/0% nauseous0% stomach0% sinuses0% headache0% sore throat0% stools0 loose%) - not what I’m wearing, so praps 5mg antihistamine is perfect??
7:00 17’ 80%/2/15% p0 st3 sip fw1’ cough0 deep/ air/ A6->/ plugs0 cream/ gel0 HWB0
(nostril/s0/10% nauseous->20% stomach0% sinuses->50% headache->50% sore throat0% stools0 loose%) → A6, changed socks, songs
7:40 25’ better after GABA, but awake, so → FCS#1. Thought cold feet came from the big heel holes in both woolen pairs, but now realized only 2 cotton pairs under that, so now back to 5 pairs, one not two with heel holes. Stomach problems cos no more almond milk upstairs, don’t want to go down in the cellar so I don’t wake up completely. However lips feel better and I’m sometimes wondering if it’s all the almond milk I’m somehow allergic too… Well, had to get some now… hope stomach gets better and lips don’t get worse…
-10:13 10:20 B1-4 ‘ in sun, stools loose%
Sum: 10h13-1:00-(5+5+5+5+17+25=)62 = 9h13-62 = 8h11, up 6x (62’), all deep.

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2, stools ➔ 0%/2 :white_check_mark:, ➔ TT 1:0 (picking up 0 balls) ➔ 80%/2 :white_check_mark:, moving ➔ 80%/2 :white_check_mark:
ACTIONS ➔ PAINS :white_check_mark:: except GI: stools loose0% :white_check_mark:, appetite better from going back to pure veggies (:white_check_mark:), esophagus: carrots extra works :white_check_mark:, pee pain: 2xp1-2 :white_check_mark:, lower back unrest :white_check_mark:, finger tips: better. (:white_check_mark:). Lips still red inflamed, pressed to white (:x:).
Dry heaved once after baked beans: Thursday evening I strangely “revolted” to baked beans, felt as if they were bad, cos they tasted like fish to me, my wife said they smell OK, but I then stopped, suddenly had to run to the bathroom and violently dry heaved with a really loud noise once, but nothing came out, and that was that, except

Hand pain:
On the topic of local pains, a sort-of-new pain in my hands has come up (noticed doing a few push ups to see how my energy is doing). I’ve long realized that zero tolerance for local pains and doing something about them immediately is a lot better than letting them become chronic. But I first didn’t take that too seriously, which is not “best practice”: luckily however after carrying my little grandchild a bit I started feeling into my hand more, by accident, and suddenly found the origin surprisingly at the bottom of my index/pointing finger, presumably the insertion point of a tendon, as usual. Same on the other side, which means it may be more of a “system” problem rather than a small injury or overstraining.

Then I massaged it for a few minutes, just with the fingers and palm of my other hand, and then changing hands (I was still on the playground, resting, the others knew they needed to just leave me alone for a while) noticed that the pain was going all thru my hands and lower arms, from the tiny (?)origin to really big areas. And it then got a lot worse that day, so I had the feeling maybe I’d overdone it. Although I actually don’t care at all about any worsening pains if it’s for the general good, as I am pain tolerant. But the day after - there was nothing, all gone, but didn’t do any tests. And today 2 days after? I’ll do a test now, try some push ups, altho my energy isn’t what it could be… :trophy: 20 push ups - no pain in my hand, but a little around my wrist joints. I’d noticed before that my finger joints and wrists are stiff, but when I move them with my other hand there is no pain, so again these are the tendon insertion points causing the stiffness. So I’ll now be trying massages of these points…:
Ah, one origin around the right wrist is a spot at/on the head of the ulna (pinky finger side of wrist), another on the left wrist is on the head of the radius (thumb side of wrist).
My fingers are harder - they feel (don’t look) “thick”, swollen, as if I’d put them in stinging nettles. The two smallest on either side seem best. A quick youtube search this time does not help, because that points me to actually swollen fingers, but they aren’t. Need to go deeper for that, or just try something out. Not sure if my gardening will help or harm or both… My wife thinks osteoarthritis, OA, so I’d think gardening is good.
Today, Thursday, I’ve been massaging or rather trigger pointing esp. my right wrist, not too much. As opposed to the 3 trigger point sorts I listed above, one 4th type cropped up, similar to the nerve one, just a pain point radiating down/up to an end point at my elbow, in between less pain. :microscope:

Click for details on Touch, Covid, Weather, last seizures Jan 14th & 15th, last esophagus block Feb 26th + 20th + 5th, last jaw pain praps Jan 30th.

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 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. 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. Jan 10th: A bit after tooth cleaning. After: regularly a little bit, 1-2x/d. Better since improving tooth care again and giving that side of the jaw a rest from chewing for a few days from Feb on.

Treatments

Click for details: Antifungal cream for lips first, then preferred a tea tree oil cream, see how that goes instead. Antihistamine again evening of Feb 27th, since March 1st halved, so 5mg. T4 for thyroid, starting Feb 24th, March 2nd after some days with a bit more I used a small speck this morning. Results from bloods on Feb 7th: biotin and manganese too high, so I'll not order them, LDH & homocysteine slightly too high, so I'll check, Ω3 much too low, found a hidden bottle, then I'll order it again soon. Not re-starting Chinese acupuncture or cryotherapy and/or acupressure after unsuccessful/harmful last sessions.

The anti-sore cream didn’t work that well, so tried GP’s antifungal cream for my lips Feb 28th, then Mar 1st tea tree oil cream.
GP prescribed T4 Feb 23rd to try. Day #4 bit more than the days before: Slower energy, histamine-y sinuses and frontal headache.
Bloods at cardio Feb 7th: Most bloods (like B2, phosphate and protein) are better, but still keeping those going, biotin and manganese too high.

SELF-PHYSIO (click for details): 72'

white_check_mark: airing 5x2’, cold shower 1x(10’), cream/oil fc/ey/hd/ft 10x1’, teeth 2x2’, HWB 0x3’, breath exercises 5x1’, Y. Nidra 0’, massage gun 1x3’, daylight lamp/sun 4x5’, plantar/calf stretch 2x1’, acupressure 0x1’, palpate 0’, belly 1’, back 10’, !!aloe vera 0x1’, twist-stretch 1x1’, yoga/stretching 1x1’, hang 1x1’. wart x1.
Combine: next?
:x: hunchback-pillow 0’. neck 1+ x1’, RR: 0, 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 11th: Still to get MSM, manganese, E as tocotrienol and my silymarin again. Yet to try: Creatine? ATP again, encapsulated, for phosphate?? Click for details on the lists, with dosing batches by times and tubs.

ZERO now: Arg, alpha-GPC 1x150mg, fisetin: 0x196mg, huperzia A, mumijo, NAC 1*.5g, NADH, psyllium (Ps), 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, 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.
EVERYTHING DELAYED AGAIN, BUT NOT WORRYING. JUST KEEPING AT IT.
“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
“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 Soak pumpkin seeds & almonds.
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)
xylitol
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
xylitol
teeth
“16:00” preparing pills: 5x to encapsulate.
E “17:00” (“meal/acids+2h”) Ellag#2, Fev/MSM#3 Qc#4, Ro#2, Rs#2.
A1 “18:00”
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. Fev/MSM: B,D0. Ga 4-5x: a2,a3,a4,C,D, Gi: C,D0,D Glutathione: B. Hon:A2.A3. Oliv: C,D. pine: C,D. Qc: A1.A3.B.E 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) A3: Glutamin (0c1), B (or C): ALA, EGCg, 2xeleu, , Ru, 2 Sa, Sily, 2Th, C: 2 Gly, PEA, DAO before risky meals? monkfruit usually evenings, aloe vera. D3 saturdays. (A2:0Se, up soon)
TALLIES Jan 9th: correct?
A1=6+1 Pf#1 Qc1#1, Lut, 2 MgThreo, + myo-inositol + (DAO?)
A2=16 2vB2#1 "2"xvB3, vB5#1, 2xCr#1, Cu, Pf#2, Ga#1, Hon#1, Q10, Se, 2TMG#1 + Rup. = 16
+Ω3/PQQ/aloe +monkfruit +apigenin 16(+5) -1 vB5 = 15.
A3=5 Pf#3, Ga#1, Gltm, Hon#2, Qc#3
A4=1 Ga, A5=1 Ga#2
B=11 ALA, EGCg, Fev/MSM#1, Glutt, Qc#3, Ro#1, Rs#2, 2xSa, 2Th, Sily (DAO?) = 11/
C=22 2vB2#2 "2"xvB3#2 vB5#2 3xvC#1 3xCr#2 Ga#4 Gi#2 Ol#1 Pin#1 TMG#2 2xEleu 2xMgGly PEA Rut = 22 - vB5 = 21.
D0=2 Ell, Fev/MSM#2, Gi, + (DAO?)
D=15 2vB2#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/
E=4 Ell, Qc#4, Ro#2, Rs#2. Fev/MSM#3
B12 4-monthly, D3 Saturdays.

Development

‘Research’ today: No.
Lessons in self-care #592 Not bad, getting better, going thru memos, got all important things today done, and lots of unimportant things, but still not managing to get my schedule earlier…
Reasons to be cheerful #634 All the simplifcations are liberating and nice for the eye and the body.
Simplified #25 Socks (5 pairs) always off/on before long johns.
Simplified #26 Electronics, meds & papers all one shelf.
Simplified #27 Relegating all old/non-organic clothes now.
Simplified #28 So easy to do supps at my high bar table in a big tub better for back and much easier to keep clean.
Simplified #29 Having re-arranged and simplified 2 "complete"rooms is spawning many more ideas too many to mention… -

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