JayCS’s Fibro Blog

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:
ACTIONSPAINS: :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.