JayCS’s Fibro Blog

Symptoms & Treatments
839

2022-06-06, Monday - Energy 20% / Sleep 85%

Hmm… yesterday deeply relaxed all day, after less sleep, today less energy and Achey
Positive summary of symptom-%s:
Σ(+): energy 20%, slp 85%, Acheless 75%, painless 90-80%, alert 75%, GI 95%, feeling 80-75%, PT >1h

Symptom overview sorted by the ACR 2016 criteria

Widespread pain (WPI): 8 +3 = 11 of 15
Overall Ache Areas (mainly limbs): = 8. Severity: 30%? Suppleness (vs. stiffness): 80%?
Local Pain Areas (mainly spine, 3): = 3. 10%

(Non-pain) Symptom severity (SSS) 3+3+2+0+1+0 = 9 of 12:
Fatigue vs. Energy (FM + MCAS) 3 out of 3 (Energy 20%)
Waking unrefreshed 3 out of 3 (Sleep quality 85%)
Cognitive symptoms 2 out of 3 (mainly fog; alertness 75%?)
Headaches & Depression: “0”, Pain/cramps in lower abdomen: “1” out of 1
Feeling Well: sleep 80%, sleep breaks 70%, day 80-70%
MCAS / allergic 10%? (except energy, subsumed under FM-fatigue above) Sinuses slightly night / early morning, foggy, something else I can’t remember.

Treatments overview

Self-treatments >1h/d
Chinese acupuncture 1h15h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 8h50, up 4x (45') ✅, ➔ Feeling 80-70% well, Ache 2 of 7 🧐, getting up: 80%/2 ✅

cold shower p0 Sleep 23:35- sore throat, ear plugs
1:30 5’ 70%/3/10% p0 st1 sip fw1’ air sore throat (ear plugs)
3:50 15’ 70%/2/10% p0 st1 sip fw7’ air, cream, burning tongue & dry mouth → gel (ear plugs)
5:25 20’ 70%/2/10% p0 st1 sip fw15’ air, stomach nauseous, very slight sore throat (ear plugs)
7:25 5’ 80%/2/?5% p0 st1 sip fw1’ stomach nauseous, sore throat (ear plugs)
-9:00
Sum: 35’+9h-(5+15+20+5=)45’ = 9h35-45’ = 8h50, up 4x (45’)

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2, TT :ping_pong: 3:1 ➔ 80%/3, so because of the trip to the university allergists tomorrow I didn’t try repeating yesterday’s 6 games, also I wasn’t deeply relaxed like yesterday, church service / mask :mask:, quite a bit of work work ➔ 75%/2-3 :face_with_monocle:/:x:.
ACTIONS ➔ PAINS: :white_check_mark: neck & clavicle :white_check_mark:/:face_with_monocle:, still working on both. GI :white_check_mark:, jaw :white_check_mark:. standing & sitting, short walk, cycle, mask: :face_with_monocle:/:x:, 1xp1-2 :white_check_mark:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:
Fibro & Touch: :white_check_mark: Walking hand in hand for 5’ in a crowd at a train station was very stressful, I’d’ve preferred walking alone, slower.
Covid-danger: :white_check_mark: I only saw few people wearing masks in the train station, a bit more in the trains. Oh dear :worried:

Treatments

Docs:
Chinese Acupuncturist - #20 on 2nd. :white_check_mark: (Sleep & +25% GABA helping.) Still seems good. Next appointment #21 on 9th, then #22 on 21st.
My chart of acupuncture since May shows that it is increasing energy directly by about 5% for 2-3 days every time I get it. The average has continued stabilizing above 20%: Only 2 days under 20%, 21 at days ≥25%, 15 days at ≤20%. I’m now sure stress caused the drop for 1 week, then recovery 1-2 weeks mid-April: I was using the extra energy for 3! gigs around Easter, plus some tough cycling to an MRI and that was probably overdoing it physically and emotionally. Good Friday I had to pimp myself, I had some focal seizures on the 15th (day of a 2nd ‘big’ gig), trying to reduce supps on 18th. Touch from showering and needles bad as a result. So too much strain and supp reduction, which also made acupuncture tougher. Which shows however that using my full energy isn’t possible: If I have 25% I can only use 20% safely, or at least it depends how intensely I use it, how much I overdo what I do. That means that it isn’t comparable to the 35-40% I need to go to work, as those gigs were comparable to 1-2 of live work.

Acupuncture since May22
Acupuncture since May221100×596 195 KB

SELF-PHYSIO (click for details): 88'

:white_check_mark: airing 4x2’, cold shower 1x(10’), cream fc/ey/hd/ft 3x1’, teeth 3x2’, HWB 0x3’, breath exercises 3’, Timing, hunchback-pillow 15’, Y. Nidra 0’, massage gun 1’, neck 1+ 3’, neck 2 0’, plantar/calf stretch 1’, acupressure 2’, palpate 1’, belly 3’, back 12’, twist-stretch 12’, yoga/stretching 8’,
Combine: next?
:x: workout 7’, horse stance 1’, aloe vera 1’, balance roll standing 5’, breath-hold 12’, jolt-jump 1’, marionette-hang 1’, shaking dance 1’, bent leg fall 1’.

Supps May 11th (~27): Supp costs:~289€/m (May 16th) CHANGED: 5 passiflora & 4 GABA. DAO seldom. I'm now taking the supps when I feel it's right, and writing down later, that's working a better than writing down and then forgetting. PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, EGCg, Mum, Mg Mal 45mg, Nc 1*.5g, (Nd), (extra) Ω3, Pe, Ps, (Rib), Se, Sr 31125k, Zn.
REGULAR as of May 5th (25): ALA .2g, B2 2*.1g, B12 5mg/3m, C 2*.5g, Cr 31g, Cu 1x, usually 0 DAO before meals, D3 1/w, EGCG 0x(50%, incl. theanine?).5g, EllagicA .2g (+43mg vit. C), Fev .4g (+.2g MSM), Ga: 4*.6g+.4g=~2.8g, Gi 3*?, Glu:~0.8g, Hon (2%).4g=8mg, Luteolin .2g, Ω3 0x5mg, Mg Gly 1x50mg, P5 27mg, Pf 1-3.35g, pine bark 1*.5g, Pq 1, Q10 (ubn) !1*.1g/d, Qc 4*.5g/d, Rs (50%) 2*.4g, Ro 2*.3g(+9mgC), Sa .1g, Sily (80%)*.5g (+83mg L-cholin) , The .2g (+.15g polyphenols).
What-when-details: Updated Feb 15th (before: see the reference post)
/20:00 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 1P5P (0Se) PQQ 3mlxΩ3 & Qc. Meal: DAO.
/21:25 A3 “21:00” PF#2 .6 GABA&.4glu#1 & 1Lut (slp!) & Qc +0NAC
Chamomile tea.
/23:05 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/01:30 B1 “01:00” .6g GABA PF#4
/09:00 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/09:00 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/09:00 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/11:20 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO +1gly
/11:20 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/13:20 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/15:25 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:35 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#? +!Ro
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.; last: Apr 10th.)

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

Pf: 0A1+1A3+0A4+0B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4 Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: A3: Luteolin A4: Rup! B2: ALA+2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:Cu(0Zn)&Hon C3:2Th+PEA (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) (0P5:A2) (0Sr: B1,C4,D4)

Development

Continuing the thoughts of the last days, I really noticed today that I was very concentrated on the inside, for work, bu couldn’t concentrate well on what people were telling me, my TT-mate and my wife.
’Research’ today: No.
Lessons in self-care #329 Curbed TT games, cos not fit and event tomorrow.
Reasons to be cheerful #331 Bit excited about the allergists tomorrow.
Things I love about myself #26 Straighforward. Try to be, at least…