JayCS’s Fibro Blog

JayCS · February 24, 2022, 2:10pm

2022-02-24, Thursday 10% - despite a bit of cheese

v1: Deep night, ‘easy’ phone call caused big flare of pain & sinuses. Breath-holding helped. Research on mast cells as connection between FM & MCAS. v2: 3rd cheese trial… seems OK today…

Triggers & resulting Symptoms

SLEEP (click for details): 8h31, up 4x (24') ✅, ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 ❌. Awake and asleep at the same time from 7 on. But more like pre-jab#2, (the last hour light sleep).

cold shower p0 Sleep 23:15-
0:25 4’ 80%/2 p0 st1 drink fw2’ air sore throat → calendula, zombified sleep.
3:13 4’ 80%/2 p0 st1 drink fw1’ air slight sore throat, zombified sleep.
5:55 7’ 80%/2 p0 st1 drink fw1’ air very slight sore throat, zombified sleep. HWB
7:26 9’ 80%/2 p0 st1 drink fw1’ kind of cortisoly awake, but dead tired. Can’t take GABA cos I need supps without amino acids first. stomach burn → almond milk. What about some magnesium, as I’m not taking that atm? (but which?) Or shall I just get up altho I think another hour’d do me good?
20’’ 2nd shower cold and/or warm (nostrils)! HWB! Chatter: GABA-speck? SUPPS & AIR 1st!
7:00: Heating on!
-8:10
Sum: 45+8h10-(4+4+7+9=)24’ = 8h55 - 24’ = 8h31, up 4x (24’)

ACTIVITIES (aiming for 40% - well 20% - physical activity of pre-fibro) ➔ ACHE: Back exercises properly and with self-discipline, but very slowly, and not much “strength” for movement, despite a sort of ‘motor’, so perpetual slow movement. ➔ 70%/3. Phone call for a friend caused pain & sinuses ➔ 60%/4, so now rest, music, breath-holding ➔ 70%/3
(e.g. cycle , TT , meetings/social , mask , kids , work ➔ ?80%/2) ?
"HOW DO I LOOK?" 8:25 White & tired 10:20/:25 Same
ACTIONS ➔ PAINS: GI: 2 esophagus blocks the last 2 days. I’m often more sensitive to any pressure tho, usually I can prevent it by stopping eating and drinking a bit of fizz.
(e.g. lie, stand, loins, sit, arms up, neck, stiff, walk, cycle, 0xp1-2, GI, talk, mask.)

Treatments

Docs:

Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? White Lips?
N-methylhistamine check to increase “hard facts” for MCAS. If not: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or Leukotriene-E4.
I’ve decided I don’t need to check my old “Anti-P note” - I’d copied it and that should be enough.

WHB (3 rounds) 11:10 1’30’’ 1’40’’ 1’30’’ 1’50’
RIBOSE: ?

SELF-PHYSIO (click for details): 1h44 ✅ (enoiugh). Combine. List-prioritize: next. Been doing breathing exercises at night to get my nostrils freer without noting them the past 3-4 days.

Supps (Feb 12th: 31): Supp costs: ~344€/m. CHANGE: CoQ10/ubiquinone <150mg/d better for lp(a). Waiting for ordered pine bark, Cu, Zn, passionflower & rhodiola. Look for better honokiol. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, Sr 31125k.
(REGULAR as of Feb 12th (31 Cu, pine, pf, rho, Zn coming): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/21:30! A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/22:10 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
Chamomile tea.
/23:00 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/03:15 B1 “01:00” PF#4
Heating on! Warm shower?
/07:30 B2 “07:00” +ALA+2x pine bark, (teeth)
/07:30 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:30 B4 “07:00” EGCg + Fev/MSM + Sily
/09:25 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/09:25 C3 “MEAL” .5gC#1 2The2 (0NAC) -10:10
/12:30 C4 “11:00” (+2h/) gi#2 gly#1. Nd#? & Ellagic acid
1 DAO (D1) “13:00” 0psyllium cheese at 15:40
/15:50 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:50 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
Again sore throat like post-jab#1, sleep also, however not as long, awake and asleep from 7 on, more like pre-jab#2. Nausea still only occasionally, not much problems with cold/thermostat. 10:00 Phone call for a friend caused pain & sinuses. 11:00 burning itchy skin.
15:00 After two “better” days (10% instead of 5-10%) why not try cheese a 3rd time?!

’Research’ today:

Mast cells as connection between FM and MCAS and long-COVID:
Afrin, one of the docs researching & propagating the MCAS-diagnosis, believes long-COVID may have MCAS as a cause. I’m hesitant to believe everything he & the others say, as diagnosis & treatments are a bit complicated and vague (or rather pseudo-exact), but as long as no one can offer me anything better and it’s helping, I don’t care and am using it as a working hypothesis.

Fibro is said to be a common co-morbidity or ‘symptom’ of MCAS.

The immune system / mast cells (a type of white blood cell) would be a connection between the “autoimmune” hypothesis as one of the possible causes of fibro and the MCAS theory. Especially as mast cells have been shown to be increased 3-fold in the skin of people with fibromyalgia (which may however be an unimportant result of it, not a cause).

A researcher in Boston USA, Theoharides, is regularly looking into and touting the supp luteolin as a mast cell stabilizer for both FM and MCAS, e.g. 2019, for instance for brain fog in MCAS, FM and other conditions. (I’m actually using luteolin myself - pretty expensive tho.)

As Banfi et al 2020 explain, the nervous system and inflammation is definitely connected, but we don’t know how: So the central sensitization idea and the (auto)immune one may not be as far apart as it may seem?
Mastrangelo et al 2018 on mast cells & cytokines Low-grade chronic inflammation mediated by mast cells in fibromyalgia: role of IL-37 - PubMed
Theoharides et al 2019 on trying to inhibit mast cells in FM Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome - PubMed
Conti et al 2020 mast cells/cytokines Impact of mast cells in fibromyalgia and low-grade chronic inflammation: Can IL-37 play a role? - PubMed
Banfi et al 2020 on T cells in FM T Cell Subpopulations in the Physiopathology of Fibromyalgia: Evidence and Perspectives - PubMed
Theoharides et al 2021 on luteolin for long-COVID brain fog Long-COVID syndrome-associated brain fog and chemofog: Luteolin to the rescue - PubMed

New post on why and how to tell people how we feel here.

Lessons in self-care #232 Did quite a bit today, but kept everything to 30 mins with a lot of breaks, it was so natural that it didn’t seem “disabled”.
Reasons to be cheerful #239 A bit of cheese was OK today, so the flares were either the beans or “just” the jab.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

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JayCS’s Fibro Blog

2022-02-24, Thursday 10% - despite a bit of cheese

Triggers & resulting Symptoms

Treatments

Related topics