JayCS’s Fibro Blog

Symptoms & Treatments
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.