JayCS’s Fibro Blog

Symptoms & Treatments
709

2022-02-19, Saturday 15% - lively night, good day, but even doing hardly anything was too much…

v2 13:45 lively night, but no big problems, incl. tummy, everything else the same, starting more home office work since my MCAS journey is fairly finalized.

(v1:) I’ve been using two sets of percentages, the :new: one since Oct21 is my maximum activity level, which I’m now using to say in absolute terms how well I’m doing, not feeling, e.g. yesterday 15%. All my % / pain points are often independent of one another:

:one: how “well”/“good” I’m feeling, usually “FeelWell 50-80%” post-jab; pre-jab 70-90%.
:two: being mentally fit usually “MentFitn 100%”,
:three: :new: an activity level of usually “ActLev 5-30%” post-jab; pre-jab 25-35%.
:four: the Ache of usually “Ache 1-4”,
:five: local pains usually “LocPn 1 or even 0” (was 2-5),
:six: sleep effectivity: <1h in 4-5 sleep breaks, restorative, not tired, usually “SlpEff 80%” (was 40%)

Up to Sep21 I’ve been using mainly :one: and :four:, from Oct21 :three:, I haven’t ever been noting :two: because it hardly changes :white_check_mark:, and for :five: and :six: I’ve been using :white_check_mark:/:face_with_monocle:/:x: (which suffices, as it’s often :white_check_mark:). I haven’t been using above abbreviations, but thinking about doing so, to clarify.

Triggers & resulting Symptoms

SLEEP (click for details): 7h58, up 4x (1h15), SlpEff = ✅ (80%), and ➔ Feeling 90% well, Ache 2 of 7 ✅, getting up: 80%/2 🧐. Tonight I managed to find exactly what my body & mind needed in various challenges: I did my back exercises next door to get my back unrest down

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower/breath ex. p0 air Sleep 23:45-
2:05 11’ 90%/2 p0 st1 drink fw8’ teeth B1 air
3:18 38’+5’ 90%/2 p0 st1 drink fw30’ 8’ back ex. fw5’
5:15 15’ 90%/2 p0 st1 drink 6: 10’ + HWB3’
7:11 6’ 90%/2 p0 st1 drink heating, air
-8:58 80%/2 p0 st1 drink air
Sum: 15+8h58-(11+43+15+6=)1h15 = 9h13-1h15= 7h58, up 4x (1h15)

ACTIVITIES (40% of the activity level of pre-fibro is the new :100:) ➔ ACHE: Resting ➔ 80%/2 :face_with_monocle:, TT :ping_pong: ➔ 80%/3 :face_with_monocle:. Achey fatigue/tired at 18:00 70%/3-4 :x:
"HOW DO I LOOK?" Pale as ever :hugs: :trophy:
ACTIONS ➔ PAINS: :white_check_mark:. Back unrest at night made me do exercises & reminded me to definitely start doing them 1-2x/d again, 1-2xp1

Treatments

Docs:

  • Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? Pale lips?
  • Tomorrow morning I start the N-methylhistamine check to praps increase “hard facts” for MCAS. If not: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or leukotriene E4. Or just accept the vagueness, who cares!
  • (re-check my old Anti-P note.)

WHB (3 rounds) :one: 1’40’’ 2’30’’ 2’ :trophy:
RIBOSE: :one: 13:55

SELF-PHYSIO (click for details): 2h58... ✅. Combine. List-prioritize: next. Temperature Friday evening: 35,5°C, so now several times a day to make sure. 12:22 36,45°C

:white_check_mark: facetime 2x1’, airing 4x2’, cold shower (10’), cream fc/ey/hd/ft 2x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 15’, Y. Nidra 30’, palpate 1’, belly 1+3’, back 8+10’, breath-hold 11’, left foot on/under right knee/cross-legged 48’, 3x/d: temperature 5’+5’, twist-stretch 4’, hair/nails 4’,
Combine: next? massage gun 20’, shaking dance 1’, workout 7’, horse stance 1’,

:x: neck 1+ 2’, neck 2 4’, plantar/calf stretch 5’, loins 5’, yoga/stretching 5’, jolt-jump 1’, marionette-hang 1’, hand-exerciser 3’, acupressure 6’, aloe vera 1’, bent leg fall 1’, calendula/tea tree x1’,
Breathing: https://www.youtube.com/results?search_query=acupressure+breath e.g. How to improve your breathing with this acupressure point - YouTube Acupressure Breathing Technique - YouTube Lungs: Mandell: AWAKEN YOUR LUNGS IN 30 SECONDS - Dr Alan Mandell, DC - YouTube & 😤 PUSH HERE AND YOUR LUNGS WILL THANK YOU - Dr Alan Mandell, DC - YouTube Joe Dispenza Breathing Technique Demonstration - YouTube https://www.youtube.com/results?search_query=+Joe+Dispenza’s+breathing+technique
Circulation: How to Improve The Blood Circulation in Your Legs in Just 3 minutes! - YouTube
Eyes tired https://www.youtube.com/results?search_query=acupressure+tired+eyes, e.g. Massage and Acupressure for Tired Eyes - Massage Monday #109 - YouTube
Face Feldenkrais: Feldenkrais® Facial #1: Relax Face, Jaw and TMJ tension - YouTube Feldenkrais Free Your Face - YouTube
Groin: 2, 5 and 6 may be best for me: How to Relieve Groin Muscle Pain in 30 SECONDS - YouTube
Legs weak: https://www.youtube.com/results?search_query=acupressure+weak+legs e.g. Pain: Acupressure Points For LEG PAIN || Leg WEAKNESS || NUMBNESS In Legs || TINGLING In Legs || SCIATICA - YouTube. best acupressure points for leg & thigh muscles , pain , weakness , numbness , strength , leg pain - YouTube
Pain, Stress, Energy: 3 Common Acupressure Points Everyone Should Know (Pain, Stress, Energy) - YouTube
Reflux: https://www.youtube.com/results?search_query=acupressure+points+for+esophagitis e.g. The 4 minute natural trick to prevent acid reflux in the oesophagus - YouTube https://www.youtube.com/results?search_query=esophagus+block
Skin itchy: https://www.youtube.com/results?search_query=acupressure+itchiness, e.g. How to relieve itchy skin naturally - 3 simple steps - YouTube, Acupressure points for skin allergy, hives, rash or eczema - YouTube, Acupressure For Itching - YouTube
Stiff: https://www.youtube.com/results?search_query=stiffness+points, e.g. Leg Pain & Stiffness Acupressure Points - YouTube
Stomach burn Acupressure Points for a Burning Stomach - YouTube
Tailbone: https://www.youtube.com/results?search_query=acupressure+tailbone+pain, e.g. Acupressure Point For Tail Bone Pain - Instant Tail Bone Pain Relief - YouTube
TCM: "It Takes Seconds" | Master Chunyi Lin on "The Most Powerful Chinese Medicine" - YouTube, qigong: "If You DO IT PROPERLY, Every Cell in Your Body Will Be Fixed" | Master Chunyi Lin - YouTube
Vagus: Vagus Nerve Massage For Stress And Anxiety Relief - YouTube
:question:: foot bath 15’, gums 2x30’’, V ‘, mirror 2’, RR x2’, nux vomica 1’.

Supps (Feb 12th: 31): Supp costs: ~344€/m (halved CoQ10, no Sr, re-added vit. C.+NAC, minus re-ordering some). CHANGE: Stop NAC again! ALA & pine: later(?) - increases alertness; but praps more for burning mouth? CoQ10/ubiquinone <150mg/d better for lp(a). Look for better honokiol & rhodiola. Starting arginine soon for lipids. Magnesium malate good for waking(?), so stopping evenings. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): 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)
/?20:15 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/21:50 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
Chamomile tea.
/23:35 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/02:10 B1 “01:00” PF#4
Heating on! Warm shower?
/7:15 B2 “07:00” +ALA+2x pine bark, (teeth)
/7:15 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/7:15 B4 “07:00” EGCg + Fev/MSM + Sily
/10:50 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/10:50 C3 “MEAL” .5gC#1 2The2 (0NAC)
/12:25 Sat.: vitD3/K2.
/12:50 C4 “11:00” (+2h/) gi#2 gly#1. Nd#? & Ellagic acid
Ginkgo from /13:50 on again.
1 DAO (D1) “13:00” 0psyllium
/14:50 D2/3 0gi"15:00" .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:05 D4 “+1gi 17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve:
20:25 A1/2
11x.1g CoQ10 ubiquinol tomorrow from B2 to D4.
“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)

Arg: Capsules? (0)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!, fatigue: increase to 1.8g for a short time!?) 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:
Becoming freer in my diet. But incredibly fatigued and tired at 18:00: Young cheese, some green beans?! Is food a trigger after all?

’Research’ today:
As “post exertional malaise” is my main remaining symptom for fibro and MCAS since all supps & antihistamine etc., I’ve had another look and found

There looking into “branched-chain amino acids (BCAA) — 5 grams”. BCAAs leucine, isoleucine] and valine are said to help after exertion, reducing glucose, mine is elevated, however acc. to studies only “during” exercise, not mid-term, and may improve serotonin, but that’s not clear to me (wikipedia).

I can’t try corticosteroids, mestinon (pyridostigmine), cannabis, cumin.
I could - as it says in a post below - most easily try increasing

  • D-riboseto 3x/d (3x5g??) or
  • CoQ10 to 1.8g!!
  • cold therapy = showers
    No idea about
    Sodium bicarbonate (baking soda) — 2 grams (half of a level teaspoon).
    Citrate supplements — 3 grams.
    Creatine hydrochloride — 2 grams.
    Citrulline — 1000 mg.
    Catalase — 600 mg (taken after exercise).
    Chinese skullcap root (Scutellaria baicalensis) — 3-6g 2-3x/d.

The NHS on a page about supps for CFS & FM links to this 2017 study saying there’s no evidence: Vitamin and mineral status in chronic fatigue syndrome and fibromyalgia syndrome: A systematic review and meta-analysis - PubMed and similar here: https://pubmed.ncbi.nlm.nih.gov
/28111818/ :grimacing: :rage:

Lessons in self-care #228 Sooo tired, shdve gone to bed earlier, but wanted to do too much. But it’s still earlier than yesterday at least.
Reasons to be cheerful #235 Again got quite a bit of stuff done.