JayCS’s Fibro Blog

Symptoms & Treatments
802

2022-05-06, Friday - 20 → 30%

Sleep 60%
Energy (FM + MCAS) 20 → 30% (even a fairly fast cycle burst, TT easy 6 games)
Suppleness 80% → 85%
Alertness 90% (tired)
Feeling Well - sleep 70% (insomnia triggers; hot), sleep breaks 80% day 80% → 85%
Ache 30% → 20% (TT 30%)
Local Pains 5%
MCAS (except energy) 5%
Self-treatments <1h/d.
Chinese acupuncture 2.5h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 7h03, up 4x (15+5+25+57=)1h42 ❌, but ➔ Feeling ?90% well, Ache ?2 of 7 🧐, getting up: ?70%/3 ❌, best to try and get tired a few days, so I'm tired again early enough.

warm shower p0 Sleep 01:00- no HWB, because heated up
04:10 15’+5’ 80%/2 p0 st1 sip fw1’ air cream gel, slight sore throat, now ear plugs. Air. Itchy skin under right foot → quite a skin problem → tea trea oil! Still heated up!
5:20 25’ no deep sleep. gel 3x.6 Yo.Ni
-6:28 57’ = 6h28-1, up 3x (15+5+25=)45’ = 5h23 Unrest, LBU, no thoughts, but can’t get comfy, thighs, hair in face, all the old insomnia triggers coming up again.
/7:25 getting a bit tired again air, everything OK, no MCAS symptoms
-9:45
Sum: 9h45-1= 8h45, up 4x (15+5+25+57=)1h42 = 7h03

ACTIVITIES (aim: 40%) ➔ ACHE: 80%/3 (tiredness), tried to do quite a bit, 2x8’ short heavy hill-cycle, shop 5’, heavy gardening 45’, TT :ping_pong: 6:0, supple, energetic and fairly fast cycling there & back (energy burst for the first time in months), bit of work ➔ 80%/2 :white_check_mark:
ACTIONS ➔ PAINS: :white_check_mark: neck: bit stiff :face_with_monocle:. GI: stools OK, esophagus bit touchy, like yesterday, but I always manage to stop in time that I only have to wait 3’ :white_check_mark:. jaw :white_check_mark: Standing at my work desk a bit, no local pains, just a bit of ache. But lying at night with lots of small pains and hair in my face irritating, hard to calm down.
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:. 21:30 Cheese without DAO… 22:25 “burnt” tongue tip? No nostrils, no sinuses. Hot at night for a change. Slight headache.
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
GP: Actually thought I wanted several things, but turned out all were slightly premature, so I just explained, laughed and wished a nice weekend…
Chinese Acupuncturist - #16 5th :face_with_monocle:. (Sleep - now particularly successful - & +25% GABA helping.) Energy rising today.

SELF-PHYSIO (click for details): 49'

:white_check_mark: airing 5x2’, cream fc/ey/hd/ft 5x1’, teeth 2x2’, hunchback-pillow 15’, palpate 1’, belly 3’, back 8’, twist-stretch 5’
Combine: next? RR!!
:x: facetime 2x1’, cold shower (10’), HWB 3’, breath exercises 4’, Timing, horse stance 1’, aloe vera 1’, massage gun 20’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 4th (~25): Supp costs:~277€/m (May 4th) CHANGED: passiflora. PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, EGCg, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (extra) Ω3, P-5-P, 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, 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)
/21:40 A1/2 “19:00” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/22:50 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
Chamomile tea.
/00:25 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/01:00 B1 “01:00” .6g GABA 0 PF#4
/10:45 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/10:45 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/10:45 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/11:40 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
/11:40 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/14:05 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
(14:35…) DAO (D1) “13:00” 0psyllium
/16:45 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/20:25 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

’Research’ today: Looking again at the diagnostic criteria for fibro, I’m realizing that not only have the ACR 2016 put tests for co-morbidities in their criteria, but also the American Pain Society 2019. I’ll be going into that more soon.
Also had a look at the rundown of FM research “2020”, published 2021, which I will want to be summarizing soon for the forums. They also referred to the diagnostic criteria.
Researchers are now trying to sort thru the confusingly many and differing criteria. So there was a comparison 2020 (Häuser, Wolfe) between the 2016 ACR modified criteria and the 2019 AAPT (by the APS) that showed that 73% more would have been diagnosed with FM by the latter, which “select individuals with less symptom severity and fewer pain sites”. Modified 2016 American College of Rheumatology Fibromyalgia Criteria, the Analgesic, Anesthetic, and Addiction Clinical Trial Translations Innovations Opportunities and Networks-American Pain Society Pain Taxonomy, and the Prevalence of Fibromyalgia - PubMed
Answering this Clauw in 2021 wrote an article he called “Time to Stop the Fibromyalgia Criteria Wars and Refocus on Identifying and Treating Individuals With This Type of Pain Earlier in Their Illness.” Both articles are behind a paywall, but on the first page of the latter we can read interesting stuff like
"These criteria were essential to research in the field of FM, and to the broader field of pain research. The ACR 1990 criteria enabled investigators around the world to perform mechanistic and other research into the pathophysiology and treatment of FM. However, this research also began to identify many problems with the ACR 1990 criteria. First, it became clear that the tenderness in the FM was widespread and not at all confined to the 18 areas of the body considered tender points. Second, studies showed that although many male individuals experienced chronic widespread pain, very few of them also had 11 or more tender points. Therefore, using the ACR 1990 criteria implied that FM was a disease almost exclusively affecting female individuals 9:1. Finally, it was also clear that most practitioners had little experience in performing a tender point examination and therefore were reluctant to consider the diagnosis of FM in their patients."

Also an Ω3/canola oil search was important to me as I had been recommended canola oil and just increased my intake l because of reducing my intake of microalgae oil. Now I’m re-thinking this. It’s also interesting because since the Ukraine war (at the moment panic buying due to people knowing that we’ll be getting less), sunflower oil is being replaced by canola oil.
The basic problem of the ratio of Ω6 to Ω3 is that the general intake of Westerners (esp. the US) is 15:1 and should be something like 5:1, 2:1 says one study or even 1:1 says another. More Ω6 blocks the uptake of Ω3.
Only about 2 years ago did I realize that sunflower seeds and oil aren’t good for us. Despite it containing a lot of vitamin E, it consists mainly of Ω6 (48-74%) and hardly any Ω3. Oleic acid is a good mono-unsaturated Ω9 fatty acid and is contained 14-39%. In “high oleic” sorts Ω9 up to 92%, so Ω6 down to 2-17%, good for frying. Apart from that it shouldn’t be heated.
But now what I’ve read up on canola is even more surprising to me in many respects: The name is an abbreviation of " Can adian o il, l ow a cid", used for marketing purposes, as rapeseed oil doesn’t sound good, didn’t taste good and wasn’t particularly healthy. Now due to new breeds, it actually basically might be - fairly. However not in its newer “improved” forms, like hydrogenated, GMO, and definitely not to be heated.
So this review (which may be industry-sponsored though) says it is. : Evidence of health benefits of canola oil - PMC And its ratio of Ω6 to Ω3 is 2:1, which is brilliant, has loads of unsaturated fats, is good for blood lipids, contains vitamin E and K. However it also has a few trans fats, not so good.
Bottom line for me is: Thanks for bringing me on to this. I still think it’s pretty OK, as I use native, cold-pressed, non-GMO, organic sorts, I will be more careful about using it, I will compare sorts in my organic food store and will also be returning to more microalgae Ω3 oil, despite the expense.
Quite good balanced article: Is Canola Oil Good for You, or Bad?

Lessons in self-care #296 Need to watch when I take my supps better, esp. passiflora for sleep in time.
Reasons to be cheerful #300 Yesterday at the sleep lab office an assistant saw me twist-stretch after getting up from waiting and later asked me whether I’d ever danced ballet… See the story above… :slight_smile:

803

2022-05-07, Saturday - back down to 20%! - cos of sleeping less? AND back up to 30% from about 15:00(?) on…

Sleep 75%
Energy (FM + MCAS) 20% → 30%
Suppleness 80%
Alertness 85% → 95%
Feeling Well - sleep 80%, sleep breaks 70-80% day 80%
Ache 30%
Local Pains 0%
MCAS (except energy) 15% (sinuses slightly a few hours)
Self-treatments >1h/d
Chinese acupuncture 2.5h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 8h40, up 4x (1h25) ✅, but ➔ Feeling 70-80% well, Ache 2 of 7 🧐, getting up: 70%-80%/2 🧐, sinuses (& as often stomach nauseous)

warm, slightly alternate shower p0 Sleep 22:55-
0:20 1h05?? 70%/2 p0 st1 sip fw1’ air A4 6
3:50 5’ 70%/2 p0 st1 sip fw1’ air cream gel slightly sore throat ear plugs bit zombified.
7:30 5’ 80%/2 p0 st1sip fw1’ air cream gel sinuses & sore throat slightly (ear plugs)
8:45 10’ 80%/2 p0 st1 B2-4/sip fw5’ sinuses & stomach nauseous cream (ear plugs)
-9:00
Sum: 1h05+9h00-(1h05+5+5+10=)1h25 = 10h05-1h25 = 8h40, up 4x (1h25)

ACTIVITIES (aim: 40%) ➔ ACHE: 75%/3 till 13:00, maybe WHM: Yes, helped, shot up. TT :ping_pong: 4:2 easy ➔ ?80%/4 for 30’ → 2 :white_check_mark:
ACTIONS ➔ PAINS: :white_check_mark: neck: OK-ish :face_with_monocle:. GI: bit loose. :face_with_monocle: jaw: slight in the morning. :face_with_monocle:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #16 on 5th :face_with_monocle:. (Sleep & +25% GABA helping.) Improving bit by bit. 2nd half of the day now, strangely…

SELF-PHYSIO (click for details): 75'. Wim Hof Breath-Holding at 13:30 gave a small energy boost again, like I'd suspected, considering.

:white_check_mark: breath-hold 12’, airing 5x2’, cream fc/ey/hd/ft 5x1’, teeth 5x2’, HWB 3’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 10’, twist-stretch 3’, plantar/calf stretch 3’,
Combine: next? RR!!
:x: facetime 2x1’, cold shower (10’), breath exercises 4’, horse stance 1’, aloe vera 1’, massage gun 20’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 4th (~25): Supp costs:~277€/m (May 4th) CHANGED: 4 passiflora. PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, EGCg, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (extra) Ω3, P-5-P, 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, 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)
/20:30 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/21:30 A3 “21:00” PF#2 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
/21:30 Chamomile tea.
/0:20 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/1:20 B1 “01:00” .6g GABA PF#4
/8;45 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/8;45 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/8;45 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/10:35 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
/10:35 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/12:35 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/15:35 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:45 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

’Research’ today:

My comparison of plantar fasciitis pain with fibro-tendon-pain...

I suddenly had the clever idea that plantar fasciitis might give a clue why fibro-muscles seize up and cause tendon pain after not moving. Seeing as it’s a pain that often happens after we get up, like fibro-stiffness (for most in the mornings, like plantar fasciitis, or as it should be called fasciosis, for me all day). Unfortunately they don’t know how exactly plantar fasciitis works either… :face_with_monocle:

Criteria ‘research’: All of below excerpts are so interesting to me that I can’t summarize or select more, sorry!**

Just wondering if I could ask contacts to get me this article without paying (48-hour online access costs 15$). https://onlinelibrary.wiley.com/doi/10.1002/acr.24198
Here Katsuhiro Toda (2014) asks if changing the criteria this considerably doesn’t lead to big problems in and comparing studies: https://onlinelibrary.wiley.com/doi/epdf/10.1002/acr.22202

Does CS (central sensitisation) explain the symptoms of fibromyalgia? https://onlinelibrary.wiley.com/doi/full/10.1111/imj.15430 (Central sensitivity and fibromyalgia, 2021, Mezhov / Guymer / Littlejohn, AUS)

Evidence so far has suggested that CS is correlated with hypersensitivity to noxious and non-noxious stimuli across all sensory modalities, pain symptoms and pain intensity.3 CS and sleep disturbance appears to be bidirectional and also affected by other pathways such as reduced serotonin.3, 27 The correlation between CS and fatigue is less clear, although one study has suggested that CS is independently associated with greater fatigue.28 CD is a common feature of fibromyalgia with deficits in executive function, attention and working memory. There have been correlations between CD and structural MRI changes such as reduced grey matter volume, a dysfunctional dopamine system as well as correlations with CS.29-31

Regarding criteria: “There are no single gold standard criteria that are used universally and international working groups continue to modify and develop new criteria.”
**1990 criteria: The tender point examination was often not performed at an appropriate standard and overdiagnosed women, and the criteria also did not include key symptoms such as fatigue and cognitive disturbance, as well as other important somatic symptoms.**8, 41 As the criteria were binary (either there was fibromyalgia or there was not), they precluded ways of measuring improvement or change.8
The fibromyalgia severity scale enabled fibromyalgia to be seen as a dimensional rather than as a discrete disorder. This scale has been referred as ‘fibromyalgianess’,44 ‘polysymptomatic distress’45 or ‘central sensitivity score (CSS)’46 **and can be applied to those with or without fibromyalgia. The CSS was an important addition to the diagnostic criteria given the mounting evidence that fibromyalgia symptoms were seen across a continuum throughout the entire range of values with the clinical syndrome of fibromyalgia on the extreme end of the scale. Additionally, there was a linear correlation between SS and measures of psychosocial distress and quality of life.**42 When diagnosing a patient with fibromyalgia, the scale can measure SS, as well as monitor change or improvement in symptoms and avoids the dilemma of whether one does or does not fit the diagnostic criteria.8 The scale should not however replace the need for ongoing clinical assessment by a physician but can provide important insights into the extent of one’s physical and psychological symptom intensity, which can have significant implications into one’s level of functioning.
…
2019 (AAPT) to develop a universal diagnostic system incorporating a biopsychosocial model for chronic pain conditions such as fibromyalgia.47 The criteria comprise five domains: core diagnostic criteria; common clinical features; common medical comorbidities; neurobiological, psychological and functional consequences; and putative neurobiological and psychological mechanisms, risk factors and protective factors. The core diagnostic criteria for fibromyalgia include multisite pain, fatigue and/or sleep problems. These criteria are simplified in order to improve the identification of FM in clinical practice and for research purposes. In a study comparing the AAPT criteria and the 2016 ACR criteria, the AAPT criteria captured a population with a 78% higher prevalence rate though with less SS and the inability to measure SS.48
…
Physicians who manage inflammatory rheumatological conditions such as RA should be aware that comorbid fibromyalgia can lead to a discrepancy between subjective and objective components of a disease activity score with higher subjective components (such as tender joint count).11 A scale such as the CSS could then be used to assess for manifestations of comorbid fibromyalgia as part of a complete clinical assessment.
…

Didn’t I cite this yesterday?:
Time to Stop the Fibromyalgia Criteria Wars and Refocus on Identifying and Treating Individuals With This Type of Pain Earlier in Their Illness Daniel Clauw First published: 05 April 2020 https://doi.org/10.1002/acr.24198

The Evolution of Fibromyalgia, Its Concepts, and Criteria, 2021, Wolfe / Rasker

Fibromyalgia developed in the 1950s from a substrate of difficult to explain regional and widespread pain mixed with symptoms of psychosocial distress. Controversies regarding psychological issues were common. Multiple criteria arose to define the disorder, but each identified a different set of patients. The identification of widespread pain as a criterion changed the nature of the disorder by effectively eliminating regional pain as a component condition. The easy-to-measure and relatively reliable widespread pain criterion then came to define the disorder. In the primary care community, diagnostic criteria were largely ignored, and a substantial fraction of diagnosed patients with lower pain scores, particularly women and those with high non-pain symptom scores, were diagnosed. Non-pain symptoms were added back to the fibromyalgia definition and criteria in 2010. Recognition grew that fibromyalgia fit the description of a functional somatic disorder. The idea of fibromyalgia as a primary pain disorder with a neurobiological basis contended with fibromyalgia as a broader biopsychosocial disorder. It is increasingly recognized that fibromyalgia represents a dimensional, non-binary condition and that features of fibromyalgia extend to persons who do not satisfy the criteria. Severity assessments are now available but rarely used. The course of fibromyalgia is not well studied, and improvement and remission criteria have not been successfully defined. The future of fibromyalgia as a discrete disorder remains uncertain as features of fibromyalgia are increasingly observed in patients with multiple different medical conditions.

(Treatment)

The management of fibromyalgia involves an integrated approach of self-management strategies. The key non-pharmacological strategies include education, exercise, and cognitive-based therapy.6
The diagnosis and management of central sensitivity syndromes such as fibromyalgia is physician dependent. Some general practitioners have the expertise and experience to diagnose and manage fibromyalgia whereas others require input from specialists such as rheumatologists particularly in complex and refractory cases.6

This was all from https://onlinelibrary.wiley.com/doi/full/10.1111/imj.15430
(Central sensitivity and fibromyalgia, 2021, Mezhov / Guymer / Littlejohn, AUS)

"The revised criteria are reliable and valid when used to diagnose patients with FM, and are better than the previous criteria." says the following study: Performance of the revised 2016 fibromyalgia diagnostic criteria in Korean patients with fibromyalgia, 2019 (12$ paywall)

Maybe I put this link on yesterday’s entry too, but just in case: 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria - PubMed
"This revision combines physician and questionnaire criteria, minimizes misclassification of regional pain disorders, and eliminates the previously confusing recommendation regarding diagnostic exclusions. The physician-based criteria are valid for individual patient diagnosis. The self-report version of the criteria is not valid for clinical diagnosis in individual patients but is valid for research studies. These changes allow the criteria to function as diagnostic criteria, while still being useful for classification."
This also explains to me the difference between the patients’ version of MCAS criteria and the physicians’ version.

The 2016 criteria: https://people.clarkson.edu/~lrussek/2016FMS.pdf
This will be the “patients’ version” altho it doesn’t say…

Lessons in self-care #297 Gotta keep up the self-discipline!
Reasons to be cheerful #301 Wow, back to 30%, brilliant. And interesting research.

804

2022-05-08, Sunday - 30%!

Sleep 75%
Energy (FM + MCAS) 30%!
Suppleness 90%
Alertness 100%
Feeling Well - sleep 80%, sleep breaks 80% day 90%
Ache 10%
Local Pains 0%
MCAS (except energy) 5%
Self-treatments <1h/d, plus lots of Yoga Nidra
Chinese acupuncture 2.5h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 8h52, up 5x (1h20) ✅🧐, ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐

warm (bit cold) shower p0 Sleep 00:25- air cream ear plugs
1:45 22’ 80%/2 p0 st1 sip fw18’ air cream nostrils (ear plugs) no self-discipline, but nostrils now freer → self-Yo.Ni
3:40 30’ 80%/2 p0 st1 sip fw1’ air cream nostrils(ear plugs) no self-discipline, but nostrils now completely free → self-Yo.Ni
4:30 5’ 80%/2 p0 st1 sip fw1’ cream (ear plugs) → Ally’sYo.Ni
7:20 35’ 80%/2 p0 st1 sip fw30’ cream nostrils (ear plugs) → Ally’sYo.Ni / forum-work
-9:55 8’ 80%/2 p0 st1 sip fw1’ cream nostrils air (ear plugs) B2-4
Sum 1 9:55 -25-(22+30+5+35=)92 = 9h30-1h32 = 7:58, up 4x (1h32)
-10:37
Sum: 10h37-25-(22+30+5+35+8=)1h20 = 10h12-1h20 = 8h52, up 5x (1h20)

ACTIVITIES (aim: 40%) ➔ ACHE: Using the evening energy, suppleness, normality and my wife at a party, I “quickly” sang a new cover song, after putting the guinea pigs back for the night, forgetting eating and supps, then cooked and ate at the same time, remembering I’d forgotten my normal organic food store which had already closed, so I at last managed a year old chore going to a different shop which still had open and I’m still full of energy, but need to get down! ➔ 90%/1. No TT :ping_pong:, but tidying up a loft 1h was fun, interestingly tho t churned me up, altho I can’t for the life of me think why. Ended at 17:00, but it might still cause sleep problems. ➔ ?80%/2 :white_check_mark:
ACTIONS ➔ PAINS: :white_check_mark: neck? GI? jaw?
(e.g. lie, stand, loins, sit, arms up, neck, stiff, walk, cycle, 0xp1-2, GI, talk, mask.)
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #16 on 5th :face_with_monocle: +25% GABA helping is getting energy up more and more, but I still haven’t got a hang on my sleep yet and need full passiflora.

SELF-PHYSIO (click for details): Not too much, aside from Yoga Nidra, but tidying up a loft for 1h was "sports"

:white_check_mark:
Combine: next? RR!!
:x: facetime 2x1’, airing x2’, cold shower (10’), cream fc/ey/hd/ft x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, horse stance 1’, aloe vera 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 4th (~25): Supp costs:~277€/m (May 4th) CHANGED: 4 passiflora. PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, EGCg, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (extra) Ω3, P-5-P, 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, 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)
/21:15 A1/2 “19:00” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/22:40 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
Chamomile tea.
/23:55 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/02:00 B1 “01:00” .6g GABA 0 PF#4
/10:00 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/10:00 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/10:00 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/11:35 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
/11:35 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/13:40 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
0 DAO (D1) “13:00” 0psyllium
/15:20 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:40 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

’Research’ today: No.
Lessons in self-care #298 Kept the loft tidying to 1h, like I’d planned! :white_check_mark:
Reasons to be cheerful #302 Wow, 30% close to all day!

805

2022-05-09, Monday - 25%

Sleep 65%
Energy (FM + MCAS) 25%
Suppleness 86%
Alertness 85%
Feeling Well - sleep 85%, sleep breaks 80% day 80%
Ache 30%-
Local Pains 10%
MCAS (except energy) 5%
Self-treatments >1h/d
Chinese acupuncture 2.5h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 8h48, up 6x (2h10) ✅, ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐

warm / cold shower p0 Sleep 23:30- ear plugs
2:35 5’ 80%/2 p0 st1 sip fw1’ air cream B1
3:50 15’+10’ 80%/2 p0 st1 sip fw15’ air cream gel stomach nauseous Yo.Ni. No help.
4:45 1h30 80%/2 p0 st1 sip fw1h cream stomach nauseous: ate, ear plugs
7:55 5’ 70%/2 p0 st1 sip fw1’ nostrils (ear plugs)
9:35 5’ 80%/2 p0 st1 sip fw1’ air cream (ear plugs) B2-4
-10:28 80%/2 p0
Sum: 30+10h28-(5+15+10+1h30+5+5=)2h10 = 10h58-2h10 = 8h48, up 6x (2h10)

ACTIVITIES (aim: 40%) ➔ ACHE: 80%/3, TT :ping_pong: and dentist, quite a bit of the day ➔ 70%/3 :x:
ACTIONS ➔ PAINS: :white_check_mark: neck: fairly stiff :face_with_monocle: GI: first too hard, then too loose. :face_with_monocle:, jaw: :white_check_mark:, but filling fell out, had to be repaired, it’s still the question whether the inflammation can come down enough and if it is influencing my fibro versus if I get a substitute and that may also inflame… :face_with_monocle:. Standing etc. OK, arms up could’ve been better :face_with_monocle:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #16 on 5th :face_with_monocle:. Sleep not helping any more & +25% GABA helping. I desperately need to track how my sleep has developed this bad!

SELF-PHYSIO (click for details):

:white_check_mark:
Combine: next? RR!!
:x: facetime 2x1’, airing x2’, cold shower (10’), cream fc/ey/hd/ft x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, horse stance 1’, aloe vera 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 4th (~25): Supp costs:~277€/m (May 4th) CHANGED: 4 passiflora. PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, EGCg, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (extra) Ω3, P-5-P, 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, 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)
/20:30 A1/2 “19:00” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/21:40 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
Chamomile tea.
/23:30 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/02:40 B1 “01:00” .6g GABA 0 PF#4
/09:40 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/09:40 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/09:40 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/11:25 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
/11:25 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/13:30 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
0 DAO (D1) “13:00” 0psyllium
/15:00 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:00 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

’Research’ today:

Interestingly, the fibromyalgia diagnostic criteria modified 2016 actually don’t even ask for the severity of pain at all, just for how widespread it is, to exclude all regional pain conditions.
Whilst the Symptoms Severity Score (SSS) only considers fatigue, waking unrefreshed (clever one, that!), cognitive symptoms
and distinguishes mainly “2=moderate, considerable problem, often present” from “3=severe, pervasive, continuous, life-disturbing.”

So they measure fibromyalgianess by the severity of those 3 plus if 3 other symptoms are a “problem”, plus how widespread the pain is.
For me it works: my SSS and my WPI are high, my fibromyalgianess severe Check mark button :white_check_mark:. And they say it works better than other ways of diagnosing.

Edit / Part 2: Oh, and to come back and clarify why “diagnosis of exclusion” is inappropriate and outdated:
These criteria may be vague, but they are clearer and work better than just a diagnosis of exclusion, which is “We can’t see/find anything”.
There are many diagnoses where docs “can’t find anything”, but they are not all chronic widespread pain diagnoses with fatigue, insomnia etc., which is what fibromyalgia is. So previous arguments clarify that “exclusion” is not a sensible definition.

An early (2009) editorial by Wolfe on “fibromyalgianess” here https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.24553

Lessons in self-care #299 Should have timed TT :ping_pong:, seeing as I was playing against someone else without points/games - overdid it, unncecessarily.
Reasons to be cheerful #303 Got a bit done, despite being pretty tired.

806

Hey Jay,
Interesting some of your comments regarding severity of pain. I know medicos like to be able to quantify pain via a rating but pain is very subjective. What maybe considered a 5 by one person could be a 9 for another. I believe the pain type also impacts severity, a 5 maybe manageable for some, for an hour. But when that 5 is ongoing for hours (or days) the impact of that ‘5’ could equate to a ‘9’. Their scale can’t show that.
I’m presently having some fun’n’games with dr’s and painkillers/medications. I’m trying to get across that my symptoms fluctuate. They want me to be taking meds 3-4 times a day, but I don’t need them regularly 3 -4 times a day. I need them when the pain kicks in if that’s twice a day, then I medicate twice if that’s 4 times, the I take meds 4 times a day. They don’t deem to get it. I’m now at the point that I have to manage all of this for me, not them. They give me the meds and I’ll manage my way.

I get REALLY annoyed with some of these dr’s. I’ve been managing my situation for over 20yrs, I know how to manage my way. Don’t be telling me how to manage… …but they all do and they all think they know better.

Merl from the Modsupport Team

1 Like
807

2022-05-10, Tuesday - 25%

Sleep 80%! (cos earlier?)
Energy (FM + MCAS) 25%
Suppleness 90%
Alertness 90%
Feeling Well - sleep 85%, sleep breaks 85%, day 80%
Ache 20%
Local Pains 0%
MCAS (except energy) 5%
Self-treatments <1h/d
Chinese acupuncture - from now on down to 1x1h15h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 9h15, up 3x (60') ✅, ➔ Feeling 85% well, Ache 2 of 7 🧐, getting up: 85%/2 ❌, to bed before 23:00 did the trick, I think.

fairly cold shower, p0 Sleep 22:45- Light headache, burnt tongue, left of tip, slight protuberance there.
0:25 15’ 80%/2 p0 st1 sip fw1’ air sinuses ever so slightly A4
3:30 10’ 80%/2 p0 st1 sip fw1’ air cream ear plugs B1
5:30 35’ 80%/2 p0 st1 sip fw5’ air cream 6 gel (ear plugs)
-9:00 5’ 80%/2 p0 st1 sip fw1’ air cream NO sinuses despite cheese and no DAO, slightly sore throat (ear plugs) B2-4 (esophagus block)
Sum: 1h15+9-(15+10+35=)60’ = 10h15-1 = 9h15, up 3x (60’)

ACTIVITIES (aim: 40%) ➔ ACHE: 80%/2, 0 TT :ping_pong: ➔ 80%/2) :white_check_mark:
ACTIONS ➔ PAINS: :white_check_mark: neck: stiff :face_with_monocle:, GI & jaw OK. :white_check_mark:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x: Quite a bit of semi-hard cheese at 21:00 as well as some soy yogurt and more, without DAO. Light headache at back of head after, no sinuses all night! 16:00 Trying DAO and then eating dangerous stuff like walnuts and cream cheese
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #17 on 10th :face_with_monocle:. (Sleep & +25% GABA helping.)
As she started today by talking about how patients need to make decisions what is helping them best, I brought up the subject of now reducing sessions to once a week, which she gladly took that idea up.

SELF-PHYSIO (click for details):

:white_check_mark:
Combine: next? RR!!
:x: facetime 2x1’, airing x2’, cold shower (10’), cream fc/ey/hd/ft x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, horse stance 1’, aloe vera 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 4th (~25): Supp costs:~277€/m (May 4th) CHANGED: 4 passiflora. PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, EGCg, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (extra) Ω3, P-5-P, 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, 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” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/21:30 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
/22:00 Chamomile tea.
/0.25 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/3:30 B1 “01:00” .6g GABA 0 PF#4
/9:00 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/9:00 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/9:00 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
/11:20 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/14:40 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
/15:30 1x DAO (D1) “13:00” 0psyllium
/16:30 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
->18:30? 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

’Research’ today:
Looking further what the ACR criteria are saying in the part of the introductory article that is publicly available 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria - ScienceDirect
WPI + SSS = FS, fibromyalgia severity, since 2011.
The definition of fibro was changed in 2010/2011 to put more focus on the other symptoms apart from pain, but not too much, and of course for the better.
The revision 2016 combines 2010 and the revision 2011.
Have shown themselves helpful for clinic and research.
“The 2011 criteria also introduced a fibromyalgia severity (FS) score—the sum of the WPI and SSS—which permitted a quantitative measurement of the severity of fibromyalgia symptoms.”
“Both the 1990 and the 2010/2011 criteria separate cases and non-cases based on severity.” - so that means fibromyalgianess was considered since then.
“The 1990 criteria require the presence of widespread pain (4-quadrant pain), but once that is present, all persons with ≥11 tender points satisfy the fibromyalgia criteria.”
“A second major factor in any disagreement between the 1990 and 2010/2011 criteria is that the 2010 criteria deliberately altered the definition of fibromyalgia slightly by explicitly giving more emphasis to symptoms by the use of the SSS. Thus, in evaluating external data that includes the 1990 criteria, a level of 85% agreement, as observed in the 2010 study [2], can be interpreted as very close agreement.”
“In accordance with ACR criteria committee’s recommendation in 2010 regarding external validation and intermittent updates, the purpose of this report is to evaluate published data relating to external validation of the 2010/2011 criteria, examine published and unpublished problems with the criteria, and to update the criteria to address problems that have been noted. In addition, we further propose to combine the 2010 and 2011 criteria sets and clarify definitions that would enable the combined 2016 revision to function as diagnostic and classification criteria.”
“With more than 5 years of experience, the 2010/2011 criteria have been shown to be useful and valid in multiple settings. We have now combined the ACR 2010 criteria set and the 2011 modified criteria into a single set of dual purpose criteria (2016 modified criteria—Table 4). These criteria can continue to serve as diagnostic criteria when used in the clinic, but also as classification criteria when used for research.”

Lessons in self-care #300 Too much forum-work(?)
Reasons to be cheerful #304 Again acupuncture progress!

808

Hi Merl, thanks for popping in! :slight_smile:

Interestingly, the criteria for fibro don’t measure or ask for how severe the pain is!
The reason for that is that things like the tender points test weren’t working well.
So what works well for diagnosis is certain other symptoms have to be severe plus
how our pain has to be widespread, together that’s our “fibromyalgia score”, with a certain cut-off point.

I really get it with your docs. I learned inside of my first 6 months I need to become independent and fire any docs who don’t understand me. Luckily most did, and I now have a good set of docs who trust me and support me continually where they can (which isn’t much, but a bit). The only thing I’d like to try which my GP doesn’t want to is LDN. But there are 2 other docs I haven’t tried asking yet.

809

2022-05-11, Wednesday - 30%

Sleep 70%
Energy (FM + MCAS) 30%
Suppleness 90%
Alertness 90%
Feeling Well: sleep 80%, sleep breaks 80%, day 80%.
Ache 20%
Local Pains 0%
MCAS (except energy) 5%
Self-treatments <1h/d
Chinese acupuncture 1h15h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 8h, up 3x (1h45) ✅, but ➔ Feeling 80% well, Ache 2 of 7 ✅, getting up: 80%/2 ✅. Earlier in bed and I think mainly cold showering would have helped. But temperature problems maybe all the same.

warm shower (cos of acupuncture; would have liked to do cold) p0 Sleep 23:15- A4
1:00 5’ 80%/2 p0 st1 sip fw1’ air cream (slight: nostrils, stomach nauseous) B1
3:35 65’ Unrest, overheated 70%/2 p0 (but unnec., more LBU) st1 sips fw1’ air cream gel ear plugs. Not really sleep, tried self-applied Yo.Ni. Heat waves, so took top off, but then sneezing, sort of hot and cold. Wish I could have cold showered.
5:20 35’ 6 then Y.N. 80%/2 p0 st1 sips fw10’ air cream (ear plugs) gel
9:05 10’ 80%/2 p0 st1 sip fw1’ (ear plugs) B2-4
9:35
Sum: 45+9h05-(5+65+35=)1h45 = 9h45-1h45 = 8h, up 3x (1h45)

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2 TT :ping_pong: 1.5 games till my mate got a back problem, bit of work ➔ 80%/2 :white_check_mark:/:face_with_monocle:
ACTIONS ➔ PAINS: :white_check_mark: neck: bit stiff, massaged it. :face_with_monocle:. GI: esophagus block before going to table tennis with a second person, so was still hungry, first time I’d ever ‘ignored it’ and just gone out, which was a risk, but after 20 minutes it stopped (I did get a small part of the food out beforehand twice tho…).:x: jaw: good, but now my tooth has been semi-fixed, I can only clean the space in between with great difficulty, very surprisingly. So it hadn’t got easier in the last year because the teeth had changed, but because the filling had moved… Meaning food will stay in and it will inflame again - gotta be very diligent, find something new how to… :face_with_monocle:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #17 on 10th :face_with_monocle:. (Sleep & +25% GABA helping.) Still quite good. It’ll be better as soon as I get my cold showering and sleep sorted.

SELF-PHYSIO (click for details):

:white_check_mark:
Combine: next? RR!!
:x: facetime 2x1’, airing x2’, cold shower (10’), cream fc/ey/hd/ft x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, horse stance 1’, aloe vera 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 4th (~25): Supp costs:~277€/m (May 4th) CHANGED: 4 passiflora. PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, EGCg, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (extra) Ω3, P-5-P, 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, 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” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/21:15 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
/23:15 Chamomile tea.
/23:15 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/01:05 B1 “01:00” .6g GABA 0 PF#4
/09:05 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/09:05 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/09:05 B4 “07:00” 0xEGCg + Fev/MSM + Sily/
/09:40 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
/09:40 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/12:40 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
0 DAO (D1) “13:00” 0psyllium
/17:00 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:50 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

’Research’ today: No.
Lessons in self-care #301 Definitely not overdoing it!
Reasons to be cheerful #305 Continuing well: working bit by bit, bit of music - listening and making, lots (too much) forum work and over an hour of TT :ping_pong: (20’+50’)!
´

810

2022-05-12, Thursday - 20-25%

Sleep 70%
Energy (FM + MCAS) 20-25%
Suppleness 85%
Alertness 90%
Feeling Well - sleep 80%, sleep breaks 70% day 80%
Ache 30%
Local Pains 0%
MCAS (except energy) 5%
Self-treatments <1h/d
Chinese acupuncture 1h15h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 8h57, up 4x (1h45) ✅, but ➔ Feeling 70% well, Ache 2 of 7 ❌, getting up: 70%/3 ❌, slight headache. Temperature problems with nausea.

cold shower p0 Sleep 23:00- A4 ear plugs, tea tree oil
1:45 5’ 80%/2 p0 st1 sip fw1’ air (ear plugs) B1
2:55 50’ 70%/?2 p0 st1 sip fw40’ air nostrils sinuses stomach nauseous sore throat ear plugs overheated & nauseous → FCS tea tree oil. Still nauseous. self-Yo.Ni.
4:13-56=43’ 6 70%/2 p0 st1 sip fw5’ air cream stomach nauseous (ear plugs) clothes off Ally-Yo.Ni.
6:55 5’ 70%/2 p0 st1 sip fw1’ cream gel stomach nauseous, slight sore throat (ear plugs) cold & unwell from too little clothes on, gotta get used to this. B2-4
ear plugs
-9:42
Sum: 1+9h42-(5+50+45+5=)1h45 = 10h42-1h45 = 8h57, up 4x (1h45)

ACTIVITIES (aim: 40% energy) ➔ ACHE: bit of work: 80%/2, long (2x30’) slow cycle trip :biking_man: ➔ 70%/5 :x: (that’s why I’m saying partly 20% today, definitely didn’t feel like 25%) when there, but after 30’ lying down ➔ 80%/2, managed faster without problems on the way back :face_with_monocle:
ACTIONS ➔ PAINS: :white_check_mark: neck? GI: stools OK-ish, but a the most severe esophagus block at midday, really tough! :x: No problems in the evening tho. Need to add more liquids to what I eat, I think it was the quinoa and not enough oil. jaw: Need to keep any infection down, whether I want the tooth taken out or not. :face_with_monocle:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #17 on 10th :face_with_monocle:. (Sleep & +25% GABA helping.) Down today. Gotta patiently try to get sleep better.

SELF-PHYSIO (click for details): 2x fast cold showers (overheated at night), 2x tea tree oil, rest normal.

:white_check_mark: airing x2’, cold shower (10’), cream fc/ey/hd/ft x1’, teeth 2x2’, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, aloe vera 1’, massage gun 5’, twist-stretch 2’, Y. Nidra 20’, neck 1+ 2’,
Combine: next? RR!!
:x: facetime 2x1’, HWB 3’, breath exercises 4’, Timing, horse stance 1’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, breath-hold 12’, hair/nails 3’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 4th (~25): Supp costs:~307€/m (May 11th) CHANGED: 4 passiflora. PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, EGCg, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (extra) Ω3, P-5-P, 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, 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)
/21:00A1/2 “19:00” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/22:00 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
/01:50 Chamomile tea.
/23:00 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/01:50 B1 “01:00” .6g GABA 0 PF#4
Heating on! Warm shower?
B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
B4 “07:00” 0xEGCg + Fev/MSM + Sily
?11:30 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
?11:30 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/12:40 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
0 DAO (D1) “13:00” 0psyllium
/16:20 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/20:00 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

’Research’ today:
Copper is necessary for iron transport, it says here, so is that the reason my iron deposits on my legs are decreasing?? COPPER AND IRON ABSORBTION
Lessons in self-care #302 Kept the slow cycle trip in check.
Reasons to be cheerful #306 Heard a cuckoo for 15 minutes, for the first time in about 20 years!
Things I love about myself #1 TOUUGHH! OK: Caring.

811

2022-05-13, Friday - 25%??

Sleep 75%?
Energy (FM + MCAS) 25% (Felt like potentially 30% for a time, but when I tried the Ache started even last for one hour, so by definition that’s actually 10% energy…)
Suppleness 90%
Alertness 90%
Feeling Well: sleep 80%, sleep breaks 70%, day 80%
Ache 30% (TT 50% during TT) (yep, quite a bit a lot of the day, but still energy to do stuff), but:
Local Pains 0%
MCAS (except energy) 5%
Self-treatments <1h/d
Chinese acupuncture 1h15h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 7h30, up 5x (60') ✅, but ➔ Feeling 80-70% well, Ache 2 of 7 🧐, getting up: 80%/2 ✅

cold shower p0 Sleep 23:45-
2:10 5’ 80%/2 p0 st1 sip fw1’ air cream slightly sore throat B1
3:55 5’ 80->70%/2 p0 st1 sip fw1’ air cream, slight: nostrils & stomach nauseous & sore throat, ear plugs
4:20 40’ 80-70%%/2 p0 st1 sip fw1’ chatterbrain 6 air cream gel nostrils stomach nauseous (ear plugs)
7:30 5’ 80%/2 p0 st1 sip fw1’ air cream (nostrils) (stomach nauseous) (ear plugs) B2-4
8:05 5’ 80%/2 p0 st1 sip fw1’ (ear plugs) awake → Yo.Ni. 5’
-8:15
Sum: 15+8h15-(5+5+40+5+5=)60’ = 8:30-60’ = 7h30, up 5x (60’)

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/3 TT :ping_pong: 3:0 ➔ 80%/5) :x:
ACTIONS ➔ PAINS: :white_check_mark: neck, GI, jaw all OK-ish :white_check_mark:(:face_with_monocle:), phoning with son and for work, but talking philosophy for 30 mins in TT-breaks got Achey-strenuous :face_with_monocle::x:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #17 on 10th :face_with_monocle:. (Sleep & +25% GABA helping.) Hmm, still OK, maybe the Ache was more from too little sleep than acupuncture itself.

SELF-PHYSIO (click for details):

:white_check_mark:
Combine: next? RR!!
:x: facetime 2x1’, airing x2’, cold shower (10’), cream fc/ey/hd/ft x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, horse stance 1’, aloe vera 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 11th (~27): Supp costs:~307€/m (May 11th) CHANGED: Still 4 passiflora, 5x0.6g GABA, most stuff back on. 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 50mg, 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” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/22:55 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
23:00 Chamomile tea.
/23:45 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/02:10 B1 “01:00” .6g GABA 0 PF#4
/07:30 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/07:30 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:30 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/10:50 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
/10:50 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
13:30? 13:30 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/16:45 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/19:40 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

’Research’ today: No.
Lessons in self-care #303 Kept my energy more to myself, cos I guessed it wouldn’t work today.
Reasons to be cheerful #307 Getting lots of online stuff done as I’ve reduced making music for a time.
Things I love about myself #2 Love to love.

812

2022-05-14, Saturday - 25%

Sleep 85%
Energy (FM + MCAS) 25%
Suppleness 85%
Alertness 95%
Feeling Well: sleep 80%, sleep breaks 80%, day 85%
Ache 20%
Local Pains 0%
MCAS (except energy) 5%
Self-treatments <1h/d
Chinese acupuncture 1h15h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 9h25, up 4x (45') ✅, and ➔ Feeling 80% well, Ache 2 of 7) ✅, getting up: 80%/2) ✅

cold shower p0 Sleep 23:05-
01:15 10’ 80%/2 p0 st1 sip fw1’ air cream B1
03:25 25’ 80%/2 p0 st1 sip fw1’ air cream gel sore throat → calendula essence → stomach ache left eyebrow: trigeminus burning.
4:00 5’ 80%/2 p0 st1 sip ear plugs stomach/cold → HWB#1
7:00 5’ 80%/2 p0 st1 sip fw1’ air cream nostrils (ear plugs) B2-4
-9:15
Sum: 55+9h15-(10+25+5+5=)45’ = 10h10-45 = 9h25, up 4x (45’)

ACTIVITIES (aim: 40% energy) ➔ ACHE: ?70%/3
0 TT :ping_pong:, tidying up ➔ 80%/2-3! :white_check_mark:
ACTIONS ➔ PAINS: :white_check_mark: neck & GI & jaw alls OK-ish :white_check_mark:.
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:. Nostrils & sore throat at night probably cos wife aired too long in the evening.
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #17 on 10th :face_with_monocle:. (Sleep & +25% GABA helping.) Good day overall.

SELF-PHYSIO (click for details):

:white_check_mark: Airing 5x2’, cold shower (10’), cream fc/ey/hd/ft 3x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 25’, palpate 1’, belly 3’, back 10’, aloe vera 2x1’.
Combine: next? RR!!
:x: facetime 2x1’, horse stance 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 11th (~27): Supp costs:~307€/m (May 11th) CHANGED: Still 4 passiflora, 5x0.6g GABA, most stuff back on. 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 50mg, 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” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/21:40 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
/23:05 Chamomile tea.
/23:05 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/01:15 B1 “01:00” .6g GABA 0 PF#4
/07:00 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/07:00 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:00 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/10:10 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
/10:10 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/12:05 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/20:00 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:00 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

’Research’ today: No, but a lot of forum-work as rest between the 2 activities.
Lessons in self-care #304 thought I overdid it, didn’t tho.
Reasons to be cheerful #308 Tidied a lot up, 2.5h. Later nice once again in botanical gardens, natural flowers, lizards in the sun, peace and rest.
Things I love about myself #3 I’m patient.

813

2022-05-15, Sunday - 20%. Did I overdo it yesterday morning?

How unusual for me for the Ache & fatigue to come a day later, but it did seem like a cortisol “push”.
Praps the (little) dust and dirt from the attic triggered MCAS-fatigue, and that doesn’t come as quickly as fibro-fatigue?

Sleep 80%
Energy (FM + MCAS) 20% (dust & dirt yesterday?)
Suppleness 80%
Alertness 80%
Feeling Well: sleep 70-80%, sleep breaks 70-80%, day 80%
Ache 30%
Local Pains 25% at night - not tough, but discomfort, annoying.
MCAS (except energy) 10% (sneezing)
Self-treatments >1h/d
Chinese acupuncture 1h15h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 8h44, up 3x (23') ✅, ➔ Feeling 80% well, Ache 2 of 7 ✅, getting up: 80%/2 ✅, managed to keep sleep breaks down, altho starting too late, hard waking.

cold shower p0 Sleep 00:30-
2:45 15’ 80%/2 p0 st1 sip fw12’ air stomach hurting → drink. (Too long!) ear plugs B1
4:10 3’ 70%/2 p0 unrest, slight pains st1 sip fw2’ air cream (ear plugs) cold wash.
7:45 5’ 80%/2 p0 st1 sip fw2’ air cream (ear plugs) B2-4
-9:37 70%/2
Sum: 9:37-30-(15+3+5=)23’ = 9h07-23’ = 8h44, up 3x (23’)

ACTIVITIES (aim: 40% energy) ➔ ACHE: 70%/3. Seems the 2.5h rummaging and tidying yesterday was “cheating”. TT :ping_pong: in the morning 2:0, but lots of Ache all the time ➔ 70%/3 :x:. Bit better at 16:00 after lots of rest. Meeting kids outdoors…? I went there, but I didn’t manage, went back home after 15 minutes ➔ 70%/3-4 :x:. Astonished that only 3 (young) people there had a mask on - I’m thinking they were Covid-positive. 100s of people all without masks. Scary for me.
ACTIONS ➔ PAINS: :white_check_mark: neck & GI & jaw: OK-ish :white_check_mark:. I can get in between the dratted teeth, that’s not the problem. But somehow my tongue is being cut by something on or near that tooth, 3rd day in a row. Maybe need to ask dentist to rasp it.
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:. Sneezing Sunday evening.
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #17 on 10th :face_with_monocle:. (Sleep & +25% GABA helping.) Might’ve been good without overdoing it yesterday? Next 17th.

SELF-PHYSIO (click for details): 2x Wim Hof breath-holding 22'!

:white_check_mark: airing 5x2’, cold shower (10’), cream fc/ey/hd/ft 3x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 25’, palpate 1’, belly 3’, back 12’, breath-hold 2x11’, neck 1+ 2’,
Combine: next? RR!!
:x: facetime 2x1’, horse stance 1’, aloe vera 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, hair/nails 3’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 11th (~27): Supp costs:~307€/m (May 11th) CHANGED: Still 4 passiflora, 5x0.6g GABA, most stuff back on. 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 50mg, 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)
/20:55 (with D2/3) A1/2 “19:00” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/22:00 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
Chamomile tea.
?00:30 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/02:45 B1 “01:00” .6g GABA 0 PF#4
/07:45 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/07:45 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:45 B4 “07:00” 0xEGCg + Fev/MSM + Sily
?11:30 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
?11:30 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/13:40 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
-16:00 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/19:10 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

’Research’ today: No.
Lessons in self-care #305 Got to get back to drinking 2L per day I think, been lazy (or rather wary due to bladder problems last week).
Reasons to be cheerful #309 I’m still sort of happy I did so much yesterday…
Things I love about myself #4 Energy. :fireworks:. Now at least still inside.

814

2022-05-16, Monday - Energy: 20% (CFS?!) Sleep quality 50%

Symptom overview based on the ACR 2016 criteria

Widespread pain (WPI): 8 +3 (+1) = 12
Overall Ache Areas (mainly limbs): = 8.
Severity: 30%-40% Suppleness (vs. stiffness) 80-85%
Local Pain Areas (mainly spine): = 3 (+1, left shoulder). 10%

(Non-pain) Symptom severity (SSS) = 9:
Fatigue vs. Energy (FM + MCAS) 3 out of 3
(Energy 20%)
Waking unrefreshed 3 out of 3
(Sleep quality 50%.)
Cognitive symptoms 2 out of 3
(mainly fog; alertness 80%)
Headaches: 0 out of 1
Pain or cramps in lower abdomen: 1 out of 1
(some stomach ache etc., although avoiding triggers diligently)
Depression: 0 out of 1

Feeling Well: sleep 80%, sleep breaks 80%, day 70%
MCAS / allergic 15% (except energy, subsumed under FM-fatigue above): 13:00 sinuses for a bit.

Treatments overview

Self-treatments >2h/d,
Chinese acupuncture 1h15h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 8h30, up 8x (3h), sleep mainly 2h30, then awake/dozing 5h, then sleep 4h. ✅, ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 60%/3 ❌. Undisciplined? Deadly! And lots of bad luck. Nothing helped, not own Yo.Ni. didn't feel like Ally's Yoga Nidra. Even developed an own speed Yo.Ni. type, just quickly going thru all limbs, tingling fingers & feet. No help.

cold shower p0 Sleep 22:45- ear plugs
1:15 25’ 80%/2 p0 st1 sip fw15’ air cream (ear plugs) A4. Dozing. That was it.
2:25 30’ 80%/2 p0 st1 sip fw1’ B1 6 cream ear plugs Dozing.
3.40 Yo.Ni. 5’ Dozing.
4:03 1h25 80%/2 p0 st1 sip fw10’ air cream gel nostrils sinuses stomach nauseous sore throat ear plugs
5:48 Ally’s YoNi. 5’ Nope. Awake.
6:11- sleep -7:30 5’ 80%/2 p0 st1 sip fw1’ (ear plugs) sleep
9:32 7’ 80%/2 p0 st1 sip fw1’ (ear plugs) B2-4
-10:15
Sum: 1h15+10h15-(25+30+5+85+5+18+5+7=)3h = 11h30-3h = 8h30, up 8x (3h), sleep mainly 2h30, then awake/dozing 5h, then sleep 4h.

ACTIVITIES (aim: 40% energy) ➔ ACHE: trying to wake up and work a bit: 70%/3, TT :ping_pong: 2:2, shop quickly ➔ 70%/4 :face_with_monocle:
ACTIONS ➔ PAINS: :white_check_mark: neck, GI & jaw OK-ish :white_check_mark:, neck, shoulders & GI sometimes. :face_with_monocle:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:. Sinuses 1h at midday.
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #17 on 10th :face_with_monocle:. (Sleep & +25% GABA helping.)

SELF-PHYSIO (click for details): Yo. Nidra & breath-holding.

:white_check_mark: airing 5x2’, cold shower (10’), cream fc/ey/hd/ft 5x1’, teeth 2x2’, breath exercises 2’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, Y. Nidra 40’, aloe vera 1’, breath-hold 12’, hair/nails 23’,
Combine: next? RR!!
:x: facetime 2x1’, HWB 3’, horse stance 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 11th (~27): Supp costs:~289€/m (May 16th) CHANGED: Still 4 passiflora, 5x0.6g GABA, most stuff back on. DAO seldom, so taken it out of the tally. 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 50mg, 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” 0PF Cr#1 0mal#1+2 0P5P (0Se) PQQ 0xΩ3 & Qc. Meal: DAO.
/22:00 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 0Lut (slp!) & Qc +0NAC
Chamomile tea.
/01:40 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/02:25 B1 “01:00” .6g GABA 0 PF#4
/09:35 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/09:35 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/09:35 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/12:15 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO
/12:15 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/14:50 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
0 DAO (D1) “13:00” 0psyllium
/16:25 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:55 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

From today - May 16th 2022 - on, I’ll try to base my symptom assessment on the ACR criteria-modfication:

To
a) encourage use of these,
b) adjust my terms & scales to more general ones,
c) get a new perspective myself;

but keeping up the following details:

  1. Distinguishing Overall Ache from Local Pain Areas,
  2. Adding Pain Severity in %, where 70% means crying/shouting from pain,
  3. (Adding Pain Duration (in h) if necessary, however usually a rating for the day.)
  4. Adding & scaling positive terms like energy, sleep quality and alertness in %.
  5. Adding a) “Feeling Well” and b) MCAS-Symptom Severity.

(My SSS-Amount according to the earlier 2010 criteria): = 15 of 41, so score 2 of 3.
According to the article under “Research-search” below: Polysymptomatic Distress Scale (PDS, score range: 0–31) is the sum of the WPI (score range: 0-19) and SS (score range: 0–12) scales [50]; the PDS has also been called the Fibromyalgianess Scale (FS)
Also I’m considering ME/CFS, the main reservation is my fairly high alertness.

Since my 2 jabs my fatigue is much higher than before. My energy level is down from 35% pre-jab to 10-30%. My sleep psychiatrist also said we should (also) be calling it “fatigue” and not just fibro and MCAS. Don’t know if she meant ME/CFS tho; I then brought that up myself and forgot to ask her.

But when I look at the criteria like https://www.cdc.gov/me-cfs/pdfs/Could-You-Have-MECFS_508.pdf, I’d say yes to:

  1. Unable to participate in routine activities (more than 6 months),
    Activity level of 10-30%, BUT my fatigue does get a bit better after rest.
  2. PEM (for moderate activities 1 hour is usually my max.) and
  3. unrefreshing sleep,
    but what about
    EITHER “Impaired memory or ability to concentrate”
    OR “orthostatic intolerance”?
    I usually manage to concentrate 80-90% for an hour at a piece.
    And I can stand for 10-20’, on good days 1-2 hours.
    I’m also wondering which of my docs to ask if they think I have it, but I spose I can try them all.

Had a look what the UK NICE guidelines say Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE
They leave out orthostatic intolerance (“associated”), but stress brain fog…
And refer to a specialist team to do the diagnosis - like, yeah, that sounds like the NHS :crazy_face:

’Research’ today:
Interesting article discussing strengths and limitations of the ACR criteria to 2016 and compares them to the AAPT 2019 criteria Diagnostic Criteria for Fibromyalgia: Critical Review and Future Perspectives - PMC (Galvez-Sanchéz & Reyes del Paso 2020). Not yet able to mention that those 2019 criteria are probably overddiagnosing.

Lessons in self-care #306 No bashing for the lapse of self-discipline at night.
Reasons to be cheerful #310 Got a few things done despite tiredness.
Things I love about myself #5 Adaptive.

815

2022-05-17, Tuesday - 25 Tired, despite making up for yesterday night…

Whoops, forgot the 23:00 supps, then all went askew due to not eating for the bloods in the morning…
Then an hour of body burning, maybe serotonin syndrome, due to taking too much GABA in one go, can’t reconstruct how what happened… :crazy_face:

Symptom overview based on the ACR 2016 criteria

Widespread pain (WPI): 8 +3 (+1) = 12
Overall Ache Areas (mainly limbs): = 8.
Severity: 30 → 20% Suppleness (vs. stiffness) 80 → 90%
Local Pain Areas (mainly spine): = 3 (+1 left shoulder >1h) (+ left jaw +0). 10%

(Non-pain) Symptom severity (SSS) 3+3+2+0+0+0 = 9:
Fatigue vs. Energy (FM + MCAS) 3 out of 3
(Energy 25%)
Waking unrefreshed 3 out of 3
(Sleep quality 80%.)
Cognitive symptoms 2 out of 3
(mainly fog; alertness 85%)

Headaches: 0 out of 1
Pain or cramps in lower abdomen: 0 out of 1
(some stomach ache etc., although avoiding triggers diligently)
Depression: 0 out of 1

Feeling Well: sleep 70%, sleep breaks 70%, day 80%
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): 9h45, up 5x (25') ✅, but ➔ Feeling 70% well, Ache 2-3 of 7 ❌, so 2nd fast cold shower at 3:50, getting up: 70%/3 ❌

cold shower p0 Sleep 22:10- ear plugs
0:15 5’ 70%/2 p0 st1 sip fw1’ air, slightly nostrils, (ear plugs) B1.
1:45 5’ 70%/2 p0 st1 sip fw1’ stomach nauseous/achey itchy skin (ear plugs)
3:40 5’ 70%/3 p1 st1 sip fw1’ air gel (ear plugs) itchy burning skin
3:50 5’ FCS → 80%/2 fw1’ stomach nauseous (ear plugs)
5:50 5’ 70%/2 fw1’ nostrils (ear plugs)
-8:20
Sum: 1h50+8h20-(5+5+5+5+5=)25’ = 10h10-25’ = 9h45, up 5x (25’)

ACTIVITIES (aim: 40% energy) ➔ ACHE: 70 → 80%/3 → 2
TT :ping_pong: 4:0 ➔ 80%/3-4 for 1h :face_with_monocle:, then the ?serotonin problem for another.
ACTIONS ➔ PAINS: :white_check_mark: neck: hurt during acupuncture :x: GI :white_check_mark: jaw :face_with_monocle:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:. itchy burning skin at night. :face_with_monocle:. Nostrils during acupuncture :face_with_monocle:.
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #17 on 10th :face_with_monocle:. (Sleep & +25% GABA helping.) Maybe the heat lamp for my back isn’t necessary in these warmer temperatures - and my nostrils close, maybe from that lamp.
Antibody-titre bloods drawn at cardio, and got given a rest of a Pfizer-jab to be given to the university allergists in 3 weeks, however that will help them.

SELF-PHYSIO (click for details): Forgot back in the morning.

:white_check_mark: airing 5x2’, cold shower (10’), cream fc/ey/hd/ft 5x1’, teeth 2x2’, HWB 0x3’, breath exercises 4’, Timing, hunchback-pillow 25’, (palpate 1’, belly 3’, back 12’ evening) aloe vera 1’, neck 1+ 2’,
Combine: next? RR!!
:x: facetime 2x1’, horse stance 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 11th (~27): Supp costs:~289€/m (May 16th) CHANGED: Still 4 passiflora, 5x0.6g GABA, most stuff back on. DAO seldom. Drat getting an over-reaction at 15:55 heat/burning/tingling: Too much GABA? No, rather not enough? Nothing fits. But kept calm and rested, pretty much gone at 16:45. 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 1x5ml, Mg Gly 50mg, 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)
/19:00 A1/2 “19:00” 1PF Cr#1 0mal#1+2 1P5P (0Se) PQQ 3mlxΩ3 & Qc. Meal: DAO.
/21:10 A3 “21:00” 1PF#1 .6 GABA&.4glu#1 & 1Lut (slp!) & Qc +0NAC
Chamomile tea.
/10:50 Forgot! GABA/glu, Ell → C4 A4 “23:00” 1PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/00:15 B1 “01:00” .6g GABA PF#4

/14:00 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/14:00 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/14:00 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/10:50 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO +1gly
/10:50 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/14:00 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/14:50 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:10 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#? +!Ro
eve:
/20:00 “19:00”
/22:20 “21:00”
“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

The thing about basing my symptom assessment on the criteria is that they are deliberately rough, for easy diagnosis, and not fine-tuned enough for my analyses.

’Research’ today: No, only forum bits, and bits of studies, not really anything new.
Lessons in self-care #307 Supps askew can be tough…
Reasons to be cheerful #311 Upward wind from acupuncture and music making.
Things I love about myself #6 Optimism.

816

2022-05-18, Wednesday - 25% Felt in limbo today, not sure what to do with myself, expectations from music & work, but no direct pressure (yet)

Symptom overview sorted by the ACR 2016 criteria

Widespread pain (WPI): 8 +3 +1 = 12
Overall Ache Areas (mainly limbs): = 8.
Severity: 30-20% Suppleness (vs. stiffness) 85%
Local Pain Areas (mainly spine): = 3 + (+0jaw left & right, +1 shoulder left). 10%

(Non-pain) Symptom severity (SSS) 3+3+2+0+1+0 = 9:
Fatigue vs. Energy (FM + MCAS) 3 out of 3
(Energy 25%)
Waking unrefreshed 3 out of 3
(Sleep quality 80%)
Cognitive symptoms 2 out of 3
(mainly fog; alertness 85%)

Headaches: 0 out of 1
Pain or cramps in lower abdomen: 1 out of 1
(some stomach ache etc., although avoiding triggers diligently)
Depression: 0 out of 1

Feeling Well: sleep 80%, sleep breaks 80%, day 80%
MCAS / allergic 5% (except energy, subsumed under FM-fatigue above)

Treatments overview

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

Triggers & resulting Symptoms

SLEEP (click for details): 8h03, up 6x (1h12) ✅, ➔ Feeling 80(-70)% well, Ache 2 of 7 🧐, getting up: 80%/3 ->2, not sure whether to get up yet or not. ❌. Started getting slight stress remembering that I'd wanted to write down for yesterday that I'd got the Ache from the 2nd TT game on. Why does that put me on edge a bit? Anyway utmost concentration got it to sleep all the same, by "keeping it in the air" and "diffusing it" mentally. Again mental power at 1:45. Mind over - hypersensitive - matter. Quite a while to wake up or even decide whether it's right to get up or not, lying down didn't help the decision either, so got up, hoping cold showering and earlier bed tonight will work and do the trick.

(cold)warm shower p0 Sleep 23:00-
23:20 20’+20* 80%/2 st1 sip fw1’ ear plugs burnt tongue tip - why?
01:30 17’ 80%/2 p0 st1 sip fw15’ air A4
03:20 5’ 80%/2 p0 st1 sip fw1’ air ear plugs. Overheated, no FCS, so clothes off. lying without duvets for a while to cool down. B1
05:10 5’ 80%/2 p0 st1 sip fw1’ air (ear plugs). Still only a T-shirt on.
6:45 5’ 70%/2 p0 st1 sip fw1’ air nostrils & stomach nauseous & sore throat slightly, (ear plugs)
-8:15
Sum: 1h+8h15-(20+20+17+5+5+5=)1h12 = 9h15-1h12= 8h03, up 6x (1h12)

ACTIVITIES (aim: 40% energy) ➔ ACHE: ?70%/3
TT :ping_pong: 0 (didn’t fit in), so bits of housework, tidying up, cleaning out, praps 1h, ➔ ?80%/2 :white_check_mark: (Hehe, 80/2 seems the new normal, with fibro alone 90/1 was normal.)
ACTIONS ➔ PAINS: :white_check_mark: neck: hurting a bit in bed :face_with_monocle: GI: OK :white_check_mark:. jaw: hurting a bit, left and right. :face_with_monocle:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #18 on 17th :face_with_monocle:. (Sleep & +25% GABA helping.) No backlash, except praps the strange 1h yesterday, but that’d be more typical for GABA, never had it for acupuncture up to now.

SELF-PHYSIO (click for details):

:white_check_mark: airing 4x2’, cold shower (10’), cream fc/ey/hd/ft 2x1’, teeth 2x2’, HWB 0x3’, breath exercises 1’, Timing, hunchback-pillow 25’, palpate 1’, belly 3’, back 12’, aloe vera 1’, massage gun 5’, twist-stretch 1’, hair/nails 15’, neck 1+ 2’,
Combine: next? RR!!
:x: facetime 2x1’, horse stance 1’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

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)
/20:00 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
/22:20 Chamomile tea.
/01:35 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/03:20 B1 “01:00” .6g GABA PF#4
/08:20 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/08:20 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/08:20 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/10:20 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO +1gly
/10:20 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/12:20 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
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

’Research’ today: No.
Lessons in self-care #308 It’s OK to feel at a loss what to do. Praps that means progress, i.e. I’m capable of doing more than I feel I should… and gathering momentum?
Reasons to be cheerful #312 Almost got rid of a blue itchy blemish under right foot using tea tree oil on it daily after the shower.
Things I love about myself #7 Grown fairly wise.

817

2022-05-19, Thursday - 25% - drifting a bit, but OK-ish, TT 3:1

Symptom overview sorted by the ACR 2016 criteria

Widespread pain (WPI): 8 +3 = 11
Overall Ache Areas (mainly limbs): = 8.
Severity: 20% Suppleness (vs. stiffness) 80%
Local Pain Areas (mainly spine): = 3. 5%

(Non-pain) Symptom severity (SSS) 3+3+2+0+1+0 = 9:
Fatigue vs. Energy (FM + MCAS) 3 out of 3
(Energy 25%)
Waking unrefreshed 3 out of 3
(Sleep quality 85%.)
Cognitive symptoms 2 out of 3
(mainly fog; alertness 85%)

Headaches: 0 out of 1
Pain or cramps in lower abdomen: 1 out of 1
(some stomach ache etc., although avoiding triggers diligently)
Depression: 0 out of 1

Feeling Well: sleep 80%, sleep breaks 80%, day 80%
MCAS / allergic 5% (except energy, subsumed under FM-fatigue above)

Treatments overview

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

Triggers & resulting Symptoms

SLEEP (click for details): 9h13, up 2x!! (60') ✅, but ➔ Feeling 70% well, Ache 2 of 7 🧐, getting up: 80%/2 ✅/🧐. Essentially 2 long stints of 4h and 5h, interrupted by a break of >1h, cold showering a 2nd time helping the 2nd stint. Less clothes after.

cold shower p0 Sleep 22:50-
03:00 15’ 70%/2 p0 st1 sip fw1’ air nostrils stomach nauseous A4. Stomach suggests not adding the 21:00 quercetin to the 19:00 one, but leaving it out instead. Don’t take Passiflora #4 in B1, just the GABA.
03:35 45’ 70%/2 p0 st1 sip fw30’ air (nostrils) stomach nauseous itchy scalp → Calendula essence (stings) ear plugs. Awake → FCS.
-9:03!
Sum: 1h10+9h03-(15+45=)60 = 10h13-1h = 9h13, up 2x (60’).

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2
TT :ping_pong: 3:1, Ache like usually coming up during the 2nd game, later online meeting (mainly listening) work ➔ 80%/2 :white_check_mark:.
ACTIONS ➔ PAINS: :white_check_mark: neck better, GI & jaw apparently quite good :white_check_mark:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #18 on 17th :face_with_monocle:. (Sleep & +25% GABA helping.). Still OK.

SELF-PHYSIO (click for details):

:white_check_mark: airing x2’, cold shower (10’), cream fc/ey/hd/ft x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, neck 1+ 2’, aloe vera 1’, yoga/stretching 5’,
Combine: next? RR!!
:x: facetime 2x1’, horse stance 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

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)
/20:00 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 1P5P (0Se) PQQ 3mlxΩ3 & Qc. Meal: DAO.
/22:00 A3 “21:00” PF#2 .6 GABA&.4glu#1 & 1Lut (slp!) & Qc +0NAC
Chamomile tea.
/03:00 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
0 B1 “01:00” .6g GABA PF#4
Heating on! Warm shower?
/9:00 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/9:00 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/9:00 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/11:00 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO +1gly
/11:00 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/13:40 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/16:20 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/19:15 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

’Research’ today: No.
Lessons in self-care #309 Bit of colleagues Yin Yoga online again, but only 15’…
Reasons to be cheerful #313 Drifting. Actually TT most days is always a reason.
Things I love about myself #8 Very creative (fairly competently)

818

2022-05-20, Friday - 15% (only TT 4:1), dragging myself thru the day.

Symptom overview sorted by the ACR 2016 criteria

Widespread pain (WPI): 8 +3 = 11
Overall Ache Areas (mainly limbs): = 8.
Severity: 30-40% Suppleness (vs. stiffness) 80%
Local Pain Areas (mainly spine): = 3. 10%

(Non-pain) Symptom severity (SSS) 3+3+2+0+1+0 = 9:
Fatigue vs. Energy (FM + MCAS) 3 out of 3
(Energy 15%)
Waking unrefreshed 3 out of 3
(Sleep quality 80%)
Cognitive symptoms 2 out of 3
(mainly fog; alertness 80%)

Headaches: 0 out of 1
Pain or cramps in lower abdomen: 1 out of 1
(some stomach ache etc., although avoiding triggers diligently)
Depression: 0 out of 1

Feeling Well: sleep 70%, sleep breaks 70%, day 70%!
MCAS / allergic 5% (except energy, subsumed under FM-fatigue above)

Treatments overview

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

Triggers & resulting Symptoms

SLEEP (click for details): 9h15, up 5x (1h30), 1-2h dozing ✅, but ➔ Feeling 80-70% well, Ache 2 of 7 🧐/ ❌, getting up: 70%/2 ❌

cold shower p0 Sleep 22:50- ear plugs
00:30 5’ 80%/2 p0 st1 sip fw1’ nostrils (ear plugs) gel dozing, so →
01:10 5’ 80%/2 p0 st1 sip fw1’ air (ear plugs) FCS
03:10 5’ 70%/2 p0 st1 sip fw1’ (ear plugs). Some bloating / pressure / wind. B1.
04:25-5:20 55’ 70%/2 p0 st1 sip fw15’ air nostrils stomach nauseous despite less quercetin (ear plugs) 6.
8:10 20’ 80%/2 p0 st1 sip fw1’ stomach nauseous (ear plugs) B2-4
-09:35
Sum: 1h10+9h35-(5+5+5+55+20=)1h30 = 10h45-1h30 = 9h15, up 5x (1h30), 2h dozing?

ACTIVITIES (aim: 40% energy) ➔ ACHE: 70%/3, TT :ping_pong: 4:1 ➔ 70%/4, not much less before, not coming down much after :x:/:face_with_monocle:, actually 70%/4-3 all day, dragging myself thru.
ACTIONS ➔ PAINS: :white_check_mark: neck: OK-ish :white_check_mark:. GI: pressure in the late afternoon and evening, partly not going in time, partly maybe food, praps coconut soy joghurt in the afternoon, and something else… Hopefully the chamomile tea at night will help a bit… :face_with_monocle: jaw: Took 5 minutes to get my main problem tooth free of food again.:face_with_monocle:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:. 21:00 2 half walnuts mixed in with veggies, after 1 DAO.
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #18 on 17th :face_with_monocle:. (Sleep & +25% GABA helping.) #19 on 27th.

SELF-PHYSIO (click for details):

:white_check_mark: airing 4x2’, cold shower 2x(10’), cream fc/ey/hd/ft 0x1’, teeth 1x2’, hunchback-pillow 15’,
Combine: next? RR!!
:x: facetime 2x1’, HWB 3’, breath exercises 4’, Timing, palpate 1’, belly 3’, back 12’, horse stance 1’, aloe vera 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

Supps May 11th (~27): Supp costs:~289€/m (May 16th) CHANGED: Still 4 passiflora, 5x0.6g GABA, most stuff back on. DAO seldom. Changing quercetin (taking 2nd one earlier in evening with meal, or omitting that dose) didn't improve stomach at night. 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)
/20:30 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 1P5P (0Se) PQQ 3mlxΩ3 & Qc.
Meal: 1 DAO
/22:30 A3 “21:00” PF#2 .6 GABA&.4glu#1 & 1Lut (slp!) & Qc +0NAC
/22:30 Chamomile tea.
/22:50 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
Help, overdose at 23:00!?
/03:10 B1 “01:00” .6g GABA PF#4
/08:30 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/08:30 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/08:30 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/10:00 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO +1gly
/10:00 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/13:55 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/16:30 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:30 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

’Research’ today: No.
Lessons in self-care #310 Toning down is fine if I’m dragging myself thru. Slowly preparing for a gig on Sunday.
Reasons to be cheerful #314 Nice songs I’ve selected, I’m sure I’ll get motivated soon.
Things I love about myself #9 Varied. (Wide ranges, colourful.)

819

2022-05-21, Saturday - 25% (Stage-fright pushing fatigue aside…)

Symptom overview sorted by the ACR 2016 criteria

Widespread pain (WPI): 8 +3 = 11
Overall Ache Areas (mainly limbs): = 8. Severity: 25-20% Suppleness (vs. stiffness) 85%
Local Pain Areas (mainly spine): = 3. 5%

(Non-pain) Symptom severity (SSS) 3+3+2+0+1+0 = 9:
Fatigue vs. Energy (FM + MCAS) 3 out of 3 (Energy 25%)
Waking unrefreshed 3 out of 3 (Sleep quality 85%)
Cognitive symptoms 2 out of 3 (mainly fog; alertness 85%)

Headaches: 0 out of 1 (Rare, mainly in the weeks after the jabs)
Pain or cramps in lower abdomen: 1 out of 1 (despite avoiding triggers: gut & stomach)
Depression: 0 out of 1 (No; seldom blue)

Feeling Well: sleep 80%, sleep breaks 70%, day 80%
MCAS / allergic 15% (except energy, subsumed under FM-fatigue above) - a bit, see below.

Treatments overview

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

Triggers & resulting Symptoms

SLEEP (click for details): 10h08, up 5x (52') ✅, but ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐, only slight histamine problems

cold shower p0 Sleep 22:30-
23:50 12’ 70%/2 p0 st1 sip fw1’ air nostrils & tickly throat (praps still due to wife’s airing and a bit more clothes on to inter-act. A4
2:00 20’ 80%/2 p0 st1 sip fw20’ air nostrils overheated → clothes off, bit burning skin.
04:50 5’ 80%/2 p0 st1 sip fw1’ air stomach slightly nauseous sore throat ear plugs
07:45 7’ 80%/2 p0 st1 sip fw1’ air sinuses slightly (ear plugs) stools OK-ish, B2-4 then
08:00 8’ 80%/2 p0 st1 sip fw1’ air sinuses (ear plugs) liquid stools, several times, gut noises
-9:30 sinuses, gut noises
Sum: 1h30+9h30-(12+20+5+7+8=)52’ = 11h-52’ = 10h08, up 5x (52’)

ACTIVITIES (aim: 40% energy) ➔ ACHE: 70%/2
TT :ping_pong: 2:2 was hardest, then shops, music, housework OK due to stage-fright ➔ 80%/2) :white_check_mark:
ACTIONS ➔ PAINS: :white_check_mark: neck: still quite good. :white_check_mark: GI: Wind in the evening probably due to the soy spread maybe being slightly off, ah, and also the microalgae oil tasted too much like fish! And I’d put some fresh rosemary in my raw veggies, much too spicy! I doubt it’s the baked beans, since I haven’t had problems with green beans and pre-MCAS didn’t have problems with baked beans at all either (just certain bean types like broad beans). Stools loose and with many gut noises in the morning. :white_check_mark: jaw: :white_check_mark:
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:. 21:00 Risky: 1 DAO then 2+ walnuts, a nut mix, hazelnut (50%) spread with soy spread on a wholemeal bun and a third of a can of baked beans… What a treat, I love baked beans. All full of histamine. See how my night goes… :face_with_monocle: First sniffing, at 22:15 3 sneezes, but that could alternatively due to my wife airing like mad in the evening to get what she calls heat out of the flat… Bit burning skin at night, 2:00. Bit of sinuses at 7:45.
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #18 on 17th :face_with_monocle:. (Sleep & +25% GABA helping.) #19 on 27th. My chart of sleep (brown) vs. energy (red) in relation to acupuncture sessions (blue) seems to show that sleep and energy are directly associated and not inversely. Maybe it would be interesting to backlog sleep to the begin of the acupuncture, I was thinking it wouldn’t be… It supports my idea that acupuncture was only increasing cortisol, so I’m still having to counteract that by using more GABA, for everything, and back to full passiflora, for sleep.

Sleep+EnergyVsAcupuncture 2022-05-20
Sleep+EnergyVsAcupuncture 2022-05-201978×488 320 KB

SELF-PHYSIO (click for details):

:white_check_mark: airing 4x2’, cold shower (10’), cream fc/ey/hd/ft 1x1’, teeth 2x2’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 8’,
Combine: next? RR!!
:x: facetime 2x1’,HWB 3’, breath exercises 4’, horse stance 1’, aloe vera 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, breath-hold 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, plantar/calf stretch 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

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)
/20:00 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 1P5P (0Se) PQQ 3mlxΩ3 & Qc. Meal: DAO.
/22:00 A3 “21:00” PF#2 .6 GABA&.4glu#1 & 1Lut (slp!) & Qc +0NAC
Chamomile tea.
/23.50 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/02:00 B1 “01:00” .6g GABA PF#4
Heating on! Warm shower?
/7:50 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/7:50 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/7:50 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/10:10 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO +1gly
/10:10 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/13:10 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
+D3
15:05 DAO (D1) “13:00” 0psyllium
/17:45 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
19:45 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

’Research’ today: No.
Lessons in self-care #311 Music tomorrow will be worth it in the end, but I do need to watch out that I don’t put too much into it.
Reasons to be cheerful #315 Bit of stage-fright is pushing fatigue aside.
Things I love about myself #10 Learnt to become pretty authentic.

820

2022-05-22, Sunday - 20% - I think due to not quite enough sleep.

Managed to get energy up for the gig by the afternoon, like yesterday.
Went well despite doubts and stage-fright growing.
2 further focal seizures, plus praps an aura - not sure what that’s all from (isn’t usualy stress, can’t imagine needing even more GABA, so less?)
Adding ribose for good measure was OK-ish, bit too much, my gut sort of survived it - two belly pangs and later nausea for a while. Maybe small energy boost, maybe placebo, probably not worth it though.

Symptom overview sorted by the ACR 2016 criteria

Widespread pain (WPI): 8 +3 = 11
Overall Ache Areas (mainly limbs): = 8. Severity: 25(-40)% Suppleness (vs. stiffness) 80-85%
Local Pain Areas (mainly spine): = 3. 10%

(Non-pain) Symptom severity (SSS) 3+3+2+0+1+0 = 9:
Fatigue vs. Energy (FM + MCAS) 3 out of 3 (Energy 20%)
Waking unrefreshed 3 out of 3 (Sleep quality 80%)
Cognitive symptoms 2 out of 3 (mainly fog; alertness 80%?)

Headaches: 0 out of 1 (Rare, mainly in the weeks after the jabs)
Pain or cramps in lower abdomen: 1 out of 1 (despite avoiding triggers: stomach & gut)
Depression: 0 out of 1 (No; seldom blue)

Feeling Well: sleep 80%, sleep breaks 70%, day 80%.
MCAS / allergic 15% (except energy, subsumed under FM-fatigue above) Bit of sinuses from stress after one of the songs.

Treatments overview

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

Triggers & resulting Symptoms

SLEEP (click for details): 9h15, up 6x (45') ✅, but ➔ Feeling 80% well, Ache 2 of 7 ✅, getting up: 80%/2 ✅

cold shower p0 Sleep 23:00 - 2nd seizure
02:15 5’ 80%/2 p0 st1 sip fw1’ air cream gel slight sore throat ear plugs
Maybe once more? A4
05:15 5’ 80%/2 p0 st1 sip fw1’ air cream gel nostrils sinuses stomach nauseous sore throat (ear plugs)
05:35 GABA (from B1) cos of sinuses, slight headache & seizures yesterday
5:55 Belly ache, but sinuses down. (remember: taking GABA or not didn’t make a difference to stomach) 6 20’ 80%/2 p0 st1 2sips fw1’
08:40 5’ 80%/2 p0 st1 sip fw1’ air cream gel nostrils sinuses stomach nauseous sore throat ear plugs B2-4
-09:00
Sum: 1+9-(5+5?+5+5+20+5=)45 = 10-45’ = 9h15, up 6x (45’)

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2
TT :ping_pong: 1:2, music practice ➔ 80%/2 :face_with_monocle:/ :white_check_mark:, “gig” (church) & 1h socializing with family afterwards ➔ 60%/4 :x:. Totally knackered after, needed lots of rest.
ACTIONS ➔ PAINS: :white_check_mark: neck: :white_check_mark: GI: :white_check_mark: (except from ribose 2 pangs and 15’ nausea :x:) jaw: :white_check_mark:/:face_with_monocle:. Sat. 20:55 focal seizure, bit of stress praps. Another at 23:00, a 3rd during TT at 12:00, probably an aura during service 18:20, but I kept calm.
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x: 20:50 slightly burnt tongue tip after walnuts and baked beans without DAO before.
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #18 on 17th :face_with_monocle:. (Sleep & +25% GABA helping.) #19 on 27th.

SELF-PHYSIO (click for details): 72'

:white_check_mark: airing 4x2’, cold shower (10’), cream fc/ey/hd/ft 1x1’, teeth 2x2’, breath exercises 4’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, massage gun 5’, breath-hold 4’, plantar/calf stretch 5’,
Combine: next? RR!!
:x: facetime 2x1’, HWB 3’, horse stance 1’, aloe vera 1’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, Y. Nidra 20’, hair/nails 3’, neck 1+ 2’, neck 2 4’, loins 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

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)
/20:15 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 1P5P (0Se) PQQ 3mlxΩ3 & Qc. Meal: DAO.
/21:40 A3 “21:00” PF#2 .6 GABA&.4glu#1 & 1Lut (slp!) & Qc +0NAC
Chamomile tea.
02:15 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/05:35 only GABA B1 “01:00” .6g GABA PF#4
Heating on! Warm shower?
/08:40 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/08:40 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/08:40 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/11:25 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO +1gly
/11:25 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
->/16:10 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/13:50 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/16:10 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

’Research’ today: No.
Lessons in self-care #312 As I thought & hoped, it was all worth it! Won’t be making it a habit being mainly responsible for the music tho.
Reasons to be cheerful #316 “Successful” day.
Reasons to be cheerful #317 My wife pointed out a beautiful new kind of tiny fly today in a garden, pale lavender coloured.
Things I love about myself #11 Prepared to make sacrifices, but learnt to keep that in check.

821

2022-05-23, Monday - 20% (I thought 25-30% first, how “funny”). OK, considering it’s “The Aftermath”. So much churning me up! Ally’s Yoga Nidra once again helped thru the rough night, much more than my own attempts (tonight & recently)… Taking it very easy, like planned. TT :ping_pong: 1:3, not much chance.

Symptom overview sorted by the ACR 2016 criteria

Widespread pain (WPI): 8 +3 = 11
Overall Ache Areas (mainly limbs): = 8. Severity: 20%-? Suppleness (vs. stiffness) 85%
Local Pain Areas (mainly spine): = 3. 10%

(Non-pain) Symptom severity (SSS) 3+3+2+0+1+0 = 9:
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 85%)

Headaches: 0 out of 1 (Rare, mainly in the weeks after the jabs)
Pain or cramps in lower abdomen: 1 out of 1 (despite avoiding triggers: stomach & gut)
Depression: 0 out of 1 (No; seldom blue)

Feeling Well: sleep 80%, sleep breaks 80%, day 80%
MCAS / allergic 25% (except energy, subsumed under FM-fatigue above) Being outside a bit got chokey throat and sinuses for ~5h.

Treatments overview

Self-treatments >1h/d (Ally’s Yoga Nidra for hours)
Chinese acupuncture 1h15h/wk

Triggers & resulting Symptoms

SLEEP (click for details): 8h45, up 5x (1h50) ✅, ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐. Couldn't manage a cold shower for "Ache" or something. ❌

warm cold shower p0 Sleep 23:00- ear plugs
0:40 5’ 80%/2 p0 st1 sip fw3’ air (ear plugs) A4
01:02 40’ 80%/2 p0 st1 sip fw1’ (ear plugs) 6 awake/unrestful B1, dozing after for praps 1h
3:55 20’ 80%/2 p0 st1 sip fw1’ air belly ache, stomach slightly nauseous, sore throat (ear plugs). Video + Mail. doze.
4:40-5:15 35’ 80%/2 p0 st1 sip/muesli fw20’ air stomach nauseous (ear plugs) FCS + Yo.Ni.
8:45-8:55 10’ 80%/2 p0 st1 sip fw1’ air stomach ache (nauseous) (ear plugs) B2-4 + YN
-9:35
Sum: 1h+9h35-(5+40+20+35+10)=1h50, 10h35-1h50 = 8h45, up 5x (1h50)

ACTIVITIES (aim: 40% energy) ➔ ACHE: ?70%/3
TT :ping_pong: 1:3 ➔ 70%/3-4 :x: and 2 small cycle trips (10’+20’), 5+15’ shops ➔ 80%/2) :white_check_mark:
ACTIONS ➔ PAINS: :white_check_mark: neck :white_check_mark: GI: Now it’s definite - I’m getting a bit of heartburn every time I drink some sheep’s milk! :face_with_monocle: jaw :white_check_mark:. I choked on my own saliva which ended up coughing, burping and almost vomiting, my wife held her hands on me to calm it down.
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x: Sinuses & throat from being outside. :x:
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:

Treatments

Docs:
Chinese Acupuncturist - #18 on 17th :face_with_monocle:. (Sleep & +25% GABA helping.) #19 on 27th.

SELF-PHYSIO (click for details): 49' + Yoga Nidra 3h+

:white_check_mark: airing 4x2’, cream fc/ey/hd/ft 2x1’, teeth 2x2’, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, Y. Nidra 3h, plantar/calf stretch 2’, neck 1+ 2’,
Combine: next? RR!!
:x: facetime 2x1’, cold shower (10’), HWB 3’, breath exercises 4’, Timing, horse stance 1’, aloe vera 1’, massage gun 20’, twist-stretch 5’, balance roll standing 5’, yoga/stretching 5’, “cross”-legged 20’, breath-hold 12’, hair/nails 3’, neck 2 4’, loins 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, bent leg fall 1’ (calendula/tea tree x1’).

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)
/21:00 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 1P5P (0Se) PQQ 3mlxΩ3 & Qc. Meal: DAO. (ate muesli + baked beans & chocolate - hope I survive that - without DAO :wink:
/22:10 A3 “21:00” PF#2 .6 GABA&.4glu#1 & 1Lut (slp!) & Qc +0NAC
Chamomile tea.
/00:45 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + 0 Rupafin
/01:45 B1 “01:00” .6g GABA PF#4
Heating on! Warm shower?
/08:55 B2 “07:00” +ALA+1x pine bark, (teeth) +!Ro
/08:55 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/08:55 B4 “07:00” 0xEGCg + Fev/MSM + Sily
/13:05 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu (or Zn) 1xHon, 0 DAO +1gly
/13:05 C3 “MEAL” .5gC#1 2The2 (0NAC)+PEA
/19:50 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
0 DAO (D1) “13:00” 0psyllium
/15:30 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/19:50 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

’Research’ today: No.
Lessons in self-care #313 Kept everything toned down.
Reasons to be cheerful #318 Lots of positive feedback.
Things I love about myself #12 Cheerful.