2022-10-20, Thursday - Energy 15-20% / Sleep 90% / Feeling ?80%-ish
Successes: Got 2 of 3 lipids down well, but triglycerides higher than ever.
Learnt: … ToDo: CoV-antibodies down means 3rd jab on Nov 7th, probably means the most severe flare I’ve ever had - raring to go…
Today’s symptoms sorted by the ACR 2016 criteria
Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (20-30%, stiff 10%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (85-80%), insomnia 3 (10%), fog 2 (15%), headache 0, GI 1 (20%), depression 0
Triggers & resulting Symptoms
SLEEP (click for details): 9h46, up 6x (48'), all deep! 🧐✅ ➔ Feeling ?90% well, Ache ?1 of 7 ✅, getting up: ?80%/?2 ✅. Nostrils 20% stuffy 40% of the night.
0cold shower teeth p0 Sleep 22:15- Why not 21:00? Not too early!
23:30 15’ 90%/1/10% p0 st1 sip fw1’ deep air A3
23:55 10’ 0%/1/10% p0 st1 sip fw1’ deep FCS#1 HWB#1 A’sYoNi
1:40 5’ 90%/1/10% p0 st1 sip fw1’ deep air A4 10%nostrils
2:45 5’ 90%/1/10% p1.2 st1 sip fw1’ deep air 10%nostrils
4:38 8’ 0%/1/10% p0 st1 sip fw1’ deep air HWB#2 10%nostrils, some stools (firm)
7.20 5’ 0%/1/10% p0 st1 sip fw1’ deep air ear plugs throat
-8:49 8:55 B1-4 5’ in sun, stools firm?
Sum: 1h45+8h49-(15+10+5+5+8+5=) 48 = 10h34-48 = 9h46, up 6x (48’), all deep!
ACTIVITIES (aim: 40% energy) ➔ ACHE: Resting a lot, then to docs for bloods, and later 1.5h TT 6:2! ➔ 80%/3 .
ACTIONS ➔ PAINS: except: neck , GI: pain after procrastinating with midday meal and only eating dark chocolate, bilberry soy yogurt and olives, which is ‘normal’ I spose! , esophagus , jaw x5’’ , pee pain: 0xp1-2
MCAS/HIT-Symptoms/Triggers/Treatments: But fatigue still high after tooth treatments and phosphate deficiency and despite acupuncture/sleep/cold showering as well probably as losing the CoV-antibodies. , but I think I might be able to still tweak sleep better.
Touch: Covid: Weather: Indoors Outdoors - don’t care about the rain, not too cold anyway.
Treatments
Docs:
Blood results: Lipoprotein (a) down even more, LDL too, HDL up, glucose down even more , but triglycerides sky-high . CoV-antibodies down , so 3rd jab on Nov 7th. phosphate still deficient! .
Chinese Acupuncturist - Session #30 on 7th, after 14 days But energy still down to 15% most of this week.
Session #31 on 21st.
Alternative health practitioner? (phoned Oct 19th, she phoned back today so let’s see when she has time!)
SELF-PHYSIO (click for details): 93'
airing 5x2’, cold shower 1x(10’), warm shower 0x(10’), cream/oil fc/ey/hd/ft 1x1’, teeth 4x2’, HWB 1x3’, breath exercises 3x1’, Y. Nidra 20’, massage gun 1x3’, plantar/calf stretch 3x1’, acupressure 0x1’, palpate 1’, belly 3’, back 10’, !!aloe vera 0x1’, twist-stretch 2x1’, yoga/stretching 0x1’, sun 3x5’.
Combine: next?
hunchback-pillow 20’, neck 1+ 1x1’, neck 2 0x1’, workout 7’, horse stance 1’, balance roll standing 5’, breath-hold 12’, jolt-jump 1’, marionette-hang 1’, shaking dance 1’, bent leg fall 1’.
Supps Oct 3rd (46 supps since mid-Sept): Supp costs:~394€/m (Oct 2nd, checked several prices). CHANGED: Ordering luteolin in 1-2 weeks. Ordered niacin (as nicotinic acid, as powder) again, since I've decided I can take the side effects and the diabetes risk, my glucose is OK even after meals. Doubled vit. C to 2x2x0.5g from Oct 14th. Flushing B3 now already at 3x350mg since Oct 13th for another while before increasing. B2 increased to 400mg, see if the next bloods are OK. Praps trying ATP again, encapsulated, since my phosphate is deficient. New idea: Creatine. PLANNED/TAKEN TODAY: click for details:
ZERO now: Arg, Cu, mum, NAC 1*.5g, Pe, Ps, Rib, Se, Sr 31125k, Zn.
REGULAR as of Oct 2nd (46 supps, all new and re-visited ones now counted): ALA .2g, alpha-GPC 1x150mg, apigenin 1x50mg, B2 2x100mg, not going down to 50mg, B3/Nia 3x150g & B3 flush free 2x400mg, B12 0x5mg/4m, C 2x2x.5g, Cr 8x0.6g, 0(-2) DAO before meals, D3 20.000 IE = 500mcg, + K2 (MK7) 200mcg, EGCG 1x(50%, incl. theanine?).5g, EllagicA 2x.2g (+43mg vit. C), eleuthero 2, Fev .4g (+.2g MSM), Fis: 1x196mg. Ga: now 3x0.3g+2x.6g=2.1g, Gi 3x168mg, Glutamin: down to 0.6g, Glutathione 2x250mg, Hon (2%)x2x.4g=16mg, huperzia 1x0.2mg, Luteolin .2g, Ω3 1x5mg, Mg Gly 2x50mg, Mg Mal 2x45mg, Mag threo “0.6g”, monk’s fruit 0.1g, myo-inositol 1x1g/2d, NADH 1x, olive leaf extract 2x.75, P5P 0x27mg, PEA 1x0.4g Pf 3x.35g, pine bark 2x.5g, PQQ 1, CoQ10 (ubn) 1x.1g, Qc 4x.5g, Rs (50%) 2x.4g, Ro 2x.35g, Rutin: 1x522. Sa .1g, Sily (80%) 1x.5g (+83mg L-cholin) , The 2x.2g (+.15g polyphenols).
What-when-details: Updated Oct 3rd
EARLIER!
/17:00 “16:15” preparing pills
0 “18:30” myo-inositol (even evenings) + teeth
/19:40 “18:45” A1/2 PF#1+2 1x300mg GABA Cr#1+2, 2 mg mal, 0-1P5P, 0x50mg B2, 1PQQ, 5ml Ω3 & Qc#1. Meal: 1xHon. monk’s fruit. CoQ10.
Meal -19:50
/21:10 “20:00” pre-A3 agigenin 1h before bedtime + teeth
0 “20:30” chamomile
/23:30 “21:00” A3 PF#3 300mg GABA & .6glu & 1Lut (slp!) & Qc#2 1xHon + mag threo. 0 Rupafin.
/1:40 “23:00” A4 300mg GABA + teeth
/8:55 B1-4 ’ in sun “07:00” ALA, 1Ro, Qc#3 Rs#1 SAM-e EGCg + Fev/MSM + Sily +2The +Fisetin. 2xNADH.+Rut.
Meal 5’ in sun 9:30-9:45 0Teeth
/12:20 5’ in sun C1-4 “MEAL!” 3!Cr#2 .6GABA#4, gink#1, 0 Zn, mag gly, pine bark#1. 2x.5gC#1 (0 NAC)+PEA + Rutin + vit.D3 1/wk. + 1x alpha-GPC. (C1:)400mg, vit.B2 (actually 100mg for 2 weeks, then 50mg, but I haven’t got much…). 2x eleuthero. 1x hup. OlivLeaf#1
/12:20 “after muesli” C5 glutathion
/?14:20 “11:00” D1 (ex-C4) + Teeth (+2h/) gi#2 1 Ellagic acid#1
/16:10-20 “14:00” 0 Meal ’ in sun
/16:30 “14:15” D2/3 ’ in sun 2x.5gC#2 , 3!Cr#3, .6GABA#5, gink#3 OlivLeaf#2, pine#2.
“after lunch” D3+ glutathion
/18:25 “16:15” teeth
/20:20 “16:15” preparing pills
/18:30 in sun D4 “17:00” (“meal/acids+2h”) Ellag#2, Qc#4.Rs#2, +1Ro
eve:
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; last: Apr 10th.)
The day's 16 supp-compartments (10', plus 5' making capsules), Oct 3rd
Pf: 1A1+1A2+1A3, alpha GPC:C2. B3f-f: C3,D3. B3f: A2,C3,D3. C:2C3+2D3 8Cr: 2A1+3C1+3D2, Ell: D1(ex-C4)+D4. 4-5xGa: a2,a3,a4,C1,D2, Gi: C2,D1 (ex-C4),D3 Glutamin: A3 (0c1) Glutathione: “C5”, “D3+” (after meal). Hon:A2.A3. Oliv leaf extr:C1D2. pine:C1D2. Qc: A2.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: A2: 2x mag mal. 0P5+1xQ1 (->ubiquinone <150mg/d! atm ubiquinol). A3: Luteolin. mag threo. B1:Fis.B2: ALA+2NADH B3:Sa. B4: 2Th EGCG&Fev/MSM&Sily C1: 2x alpha GPC. eleuthero. huperzia.pine. C2:0Cu/Zn 2Gly C3:PEA+Ru+vitB2, (A2:Ω/Pq:meal, A3: apigenin) DAO before risky meals? monk’s fruit usually evenings. D3 1x/wk. myo-inositol 1x/2d.
(A2:0Se), (0NAC: A3, B1,C1,C3,D2)
Development
‘Research’ today:
Looking for fibro humour on youtube for the other thread and mainly coming up with 3 meme videos for that I also found a few short “understand” videos that are OK to ‘show people’****:
1CBULIcf9MU Fibromyalgia: Living with chronic pain - BBC Stories 8 mins. (with “pain visualizations”)
-KHKFV2cR0s “Embarrassing” Symptoms of Fibromyalgia We Don’t Talk About 1.5 mins (TheMighty)
eqpwb1VMCzk Fibromyalgia Patients Stories Awareness Day 2022 video. 4’.
aN_CLjdcV78 What It Feels Like To Live With Fibromyalgia 14’. Typical scenarios commented by Olga Chronics.
Od5cveTGWP4 What it really means to have chronic fatigue | Fibromyalgia Awareness Month 7’.
And not really to ‘show’…:
T0v4ujN5do8 Explaining Fibromyalgia to humans . Guy ‘shouting’ it out - like we sometimes want to. 6’. (tender points error)
For our physical therapists, but if they’d listen to this they wouldn’t need it, as they’d be listening to us:
AnnZJs9oqjw Fibromyalgia Massage, Do’s and Don’ts, Funny and Informative. 6’. ( For me personally too gentle…, but good starting point.)
Excellent for our own understanding, I think:
BcciJwHyMw0 Fibromyalgia & Temperature Sensitivity // Why We Can’t Regulate Our Body Temperature 11’ by Olga Chronics, an amateur, but well researched.
7Pa0Yod5rfo Dysphagia And Fibromyalgia - How Are They Connected? 6’
(Quite OK too LbJCkpuEI2I 10 Good Things Fibromyalgia Gave Me // The Upside Of Living With Chronic Pain by Olga Chronics 13’)
My favourite long “introductions to fibro” I’ve mentioned before:
aprthkmlE2Q Fibromyalgia: It’s Real, It’s Manageable, What You Can Do Andrew Gross (UCSF Rheumatology Clinic Director) 2011 87’ (UCTV)
NnXh9dnzYgE Rachel Lynch (Arthritis Ireland summit 2019), preferred by me over the talk of et2yca1g0sM Andrea Nicol.
3bz0ivRYTR8 is the Arthritis Ireland webinar 2022 , and of these new talks I personally find
the psychological one from 1h21 on about brain, nervous system, trauma responses (fight flight freeze fawn ) excellent, but the one before about specific woman problems will probably be an interesting take for many “non-males”.
The psychological one is by Caroline Martin and has to break off, we can see what she was going to say in the contents at 1h03-1h04, which are "Strategies to sequentially respond to: PILES, standing for p hysical (activities to respond to), i ntellectual (activities… etc.), l anguage based, e motional based, s ocial. Her 5 own videos on “The Power of Us” won’t be helpful for us or for that. PILES is usually applied to child development and what I conclude what she might have been going to say is that it’s important for us to carry on developing on all 5 of these areas.
The Arthritis Ireland webinar made me look for other good videos from the last 12 months…
The best (and most detailed, up-to-date, sensible) is
A3Bj7vbUnsg Emma Guymer: All About Fibromyalgia 58’ (42’+16’ questions):
Co-morbidities & “groupings”; central sensitization; changes in the body; what helps.
These are tolerable, but not that good:
sT2NJyZKGDs Rhesus Medicine 7’ (the 4 subtypes at min. 4’ are not recognized)
yDNMhXX1tow Dr. Justus Fiechtner 26’ + 15’ questions (the 2016 criteria are presented completely wrongly)
qzTBLYjgvrw Understanding fibromyalgia 68’ by UHD NHS (OK, bit boring)
Lessons in self-care #454 I’ll use the cortisol now and see how far I get.
Reasons to be cheerful #455 Carpe diem till the jab.
- My food apparently minus broccoli…
- 1st Jab-sfx-summary, last edit: Feb 7th.
- My blog references, e.g. abbreviations, supp chart/overview
- My “How to symptom track & trigger hunt”
- Next up…: Summaries