2022-05-29, Sunday - Energy 20% / Sleep 70% / Ache 40%
Under “Development” today
- What “clearing out my workplace” means for me: simplifying.
- How much worse was the 2nd jab was than the first: A lot!
- pattern in acupuncture now: focus on sleep,
- insomnia management: get up more instead of Yoga Nidra,
- brilliant book recommendation “The Big Little Book of Resilience”,
- which docs “own” fibromyalgia: All of them…
Symptom overview sorted by the ACR 2016 criteria
Widespread pain (WPI): 8 +3 = 11 of 15
Overall Ache Areas (mainly limbs): = 8. Severity: 40 → 30% Suppleness (vs. stiffness) 85%
Local Pain Areas (mainly spine): = 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 70%)
Cognitive symptoms 2 out of 3 (mainly fog; alertness 80%)
Headaches & Depression: “0”, Pain or cramps in lower abdomen: “1” out of 1
Feeling Well: sleep 80%, sleep breaks 80%, day 70%
MCAS / allergic 15% (except energy, subsumed under FM-fatigue above).
Treatments overview
Self-treatments >1h/d
Chinese acupuncture 1h15h/wk
Triggers & resulting Symptoms
SLEEP (click for details): 8h10, up 3x (20') ) (+15' dozing) ✅, ➔ Feeling 80% well, Ache 2 of 7 ✅, getting up: 70%/2 ❌, dead tired, sinuses burning. But maybe better to stay up to get my rhythm earlier again? Seemingly very helpful tonight wasn't necessarily the cold shower, but to stay up till i was thoroughly tired.
cold shower p0 Sleep 23:45- Nope, lying awake (20’?), so got up again, 6 
1:55- B1
4:50 5’ 80%/2 p0 st1 sip fw1’ nostrils → ear plugs gel
8:05 10’ 80%/2 p0 st1 sip fw1’ air nostrils & sinuses (ear plugs) . Getting up seems to have worked out.
-10:05 5’ 80%/2 sinuses/headache, 10:25 B2-4
Sum: 10h05-1h55-(5+10+5=)20 = 8h10-20’+20’ = 8h10, up 3x (20’)
ACTIVITIES (aim: 40% energy) ➔ ACHE: 70%/4
(e.g. cycle 
, TT 
, meetings/social 
, mask 
, kids 
, work ➔ ?80%/2) ?
ACTIONS ➔ PAINS: neck GI: 1st stools pretty hard. jaw (?)
(e.g. lie, stand, loins, sit, arms up, neck, stiff, walk, cycle, 0xp1-2, GI, talk, mask.)
MCAS/HIT-Symptoms/Triggers/Treatments: Except lack of real energy as ever. Sinuses, maybe too little GABA or wonky sleep - no sleep till 2.
Fibro & Touch:
Covid-danger:
Treatments
Docs:
Chinese Acupuncturist - #19 on 27th . (Sleep & +25% GABA helping.) #20 on 2nd. See development: Even more focus on sleep, praps just earlier.
SELF-PHYSIO (click for details): 95' (25' twist-stretching in service)
airing 4x2’, cold shower 1x(10’), cream fc/ey/hd/ft 0x1’, teeth 2x2’, HWB 0x3’, breath exercises 4’, Timing, hunchback-pillow 15’, massage gun 5’, neck 1+ 2’, plantar/calf stretch 5’, palpate 1’, belly 3’, back 12’, aloe vera 1’, twist-stretch 25’,
Combine: next?
neck 2 1’, acupressure 2’, Y. Nidra 20’, workout 7’, horse stance 1’, yoga/stretching 5’, 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: Still 4 passiflora, 5x0.6g GABA, most stuff back on. DAO seldom. 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)
/20:50 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 1P5P (0Se) PQQ 3mlxΩ3 & Qc. Meal: DAO.
/22:20 A3 “21:00” PF#2 .6 GABA&.4glu#1 & 1Lut (slp!) & Qc +0NAC
Chamomile tea.
/23:45 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/01:55 B1 “01:00” .6g GABA PF#4
/10:25 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/10:25 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/10:25 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/12:20 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO +1gly
/12:20 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/14:35 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
0 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!
/19:20 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
1. Clearing out my workplace.
Actually I am not clearing it out, I am thinning it out, taking a few things home, my colleagues can now find things for me quicker if I need anything. That simplifies it all so I can use my 20-25% much more effectively. Seeing as I can’t do that much about increasing that, simplifying makes sense.
2. Second jab much worse than the first.
72 days (2.5m) after the first jab I was stable at 30% energy from 10%. = +20% in 72 days. = 0.27%/d.
108 days (3.5m) after my 2nd jab I am unstable at 20-25% from 5-10%. = +15% in 108 days. = 0.14%/d. That’s half as quick.
Despite now having all the supps, diet and antihistamine right from the start, and now acupuncture. What does it make that: 3x as bad? 4x? Or infinitely worse if I never get to stable 30%?
3. Pattern in Acupuncture: Insomnia is maybe the main problem to tackle first
I just realized my pic was wrong, I’d put a row too much in for energy. Doesn’t change much tho.
Sleep has got really bad, and I still think that’s the downside of the cortisol increasing energy.
I think it’s also caused by not being able to cold shower the night after the acupunctures.
When first starting the spine needles 3x and then a break: first sleep, then energy increased.
After that energy 22 days at 20%, 11 days 25%, 9 days 30%, 9 days under 20%, avg. 22%.
I think I still need to fight for my sleep more, after having added GABA and passiflora again.
Special treats I’ve indulged in (1-2h socializing & gigs) due to the energy have depleted sleep.
So I need to develop every day so that I get to bed by 10 or before again.
The problem is probably that the cortisol and evening socializing is disturbing the rhythm & my brain.
4. Insomnia management
Trying too much Yoga Nidra, at the moment just getting up for a few hours seems better.
5. Books on Depression and Resilience by Matthew Johnstone
The “Black Dog” is a symbol for depression. Resilience is our ability to handle setbacks, incl. that, trauma, anxiety etc.
The “Black Dog” books and videos are by the Australian Matthew Johnstone, award winning and WHO-propagated.
Now I got his nicely illustrated book about Resilience too and it is equally brilliant, also at least twice as thick.
So I will be getting more, to hand them around, and might be trying his other books too, on Meditation and Mindfulness.
There seems to be a “Little Book of Resilience” as well as the “Big Little Book of Resilience”. Mine is the German version from 2015 saying it’s a translation of the Big Little Book… , 2015. The version “Little Book…” seems to be from 2022.
As regards videos there is a 3rd one on the Black Dog called “Depression and the Fire Fighter who Fought it”.
6. Which doctors “own” fibromyalgia?
My first rheum., who didn’t diagnose it, said this not about all doctors, but about rheumatologists: Why should they diagnose it, altho it is not a rheumatological disease?
To be fair, they are right, it isn’t .
To be even fairer, they are wrong , because fibromyalgia via seeming joint pain (actually tendon pain) mimics rheumatological as well as autoimmune diseases and these fall into the domain of rheumatology. Once they’ve ‘proven’ it’s not that, further tests still have to be done, in my case and I’d recommend everyone: neurological, endocrinological and orthopedic. Once these 4 areas are done, the last one of these or the GP / PCP is the one who should be diagnosing it. So fairest is:
The rheumatologist is right : No one owns this diagnosis, because it belongs to everyone, every doc and ourselves .
That’s why the new criteria are trying to empower all/any docs to diagnose it once the 4 main fields have been checked.
’Research’ today: No.
Lessons in self-care #319 Focus on sleep!
Lessons in self-care #320 Try not to bash myself up for my music mistakes only I can hear!
Reasons to be cheerful #323 Nice gig, just cajon was only physical stress, not that much mental!
Things I love about myself #18 Never tiring to improve things.
- My food
- 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…