JayCS’s Fibro Blog

Symptoms & Treatments
902

2022-07-31, Sunday - Energy 15% / Sleep 80% / Feeling 80/60%-ish (when not moving 80%, moving 50-70% - If I do short exercises lying down (under a minute) the pain is OK, sometimes when I walk around a little, it’s OK, but then everything hurts as soon as I stop…

First severe stomach ache at night delayed getting over 8h sleep, due to a 2h long sleep break till I’d calmed it down again, mainly with Gastritol I think, but also almonds and a bit of gluten-free muesli.
Then to do that I had to sleep till 11 and that made eating & supps a bit complicated, so I didn’t breakfast, and took my morning supps directly before midday meal, and the afternoon supps 1h40 later. Hope that’s no GABA/serotonin or acid (GABA, carnitin & vitamin C) overload (heartburn…).

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 15 areas: limb-Ache 8 (20-40%, stiff 15%) + spine-pain 3 (20%), shoulder-girdles/hips 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (85%), insomnia 3 (20%), fog 2 (15%), headache 0, GI 1 (40%), depression 0

Triggers & resulting Symptoms

SLEEP (click for details): 8h57, up 5x (2h21) ✅, but ➔ Feeling 70-80% well, Ache 2-3 of 7 🧐, getting up: 80%/2 🧐

22:35 cold shower p0 Sleep 23:25-
1:33 p0 10’ 70%/3/20% st1 sip fw2’ ear plugs A4
3:50 p0 18’ 80%/2/10% st1 sip fw14’ stomach nauseous (ear plugs)
4:16-5:57 2xp0 44+57=101’ 70%/2/10% st1 fw1’ stomach pain (ear plugs) teeth almonds sneezing twice. Gastritol. Now overheating. Stomach slightly better. (p0) → FCS#2 to make sure.
7:15 p0 6’ 80%/2/10% st1 sip fw1’ (ear plugs)
9:54 p0 6’ 80%/2/10% st1 sip fw1’ (ear plugs) → Yoga Nidra/dozing
-10:49 later stools, B2-4
Sum: 35+10h49-(10+18+101+6+6=)2h21 = 11h24-2h21 = 8h57, up 5x (2h21)

ACTIVITIES (aim: 40% energy) ➔ ACHE: 60-80%/2-4 all day, despite only resting :x:
ACTIONS ➔ PAINS: :white_check_mark: except: neck :white_check_mark:? GI: 4 burning stomach pain, probably from the esophagus block, rather than the gluten-free bread slice at midday? :x:, helped by almonds, a bit of gluten-free muesli with almond milk and I think esp. Gastritol, also rested my torso high, this time backwards-twist-stretched face down, no problems when waking, even delaying first meal from 11 to 13:30 :white_check_mark:. At 13:40 a slice of pear (last time had no wind with that amount). And no bread, just the sheep cheese at 14:30, to see if that was the problem - at 15:10 no problems from either, nor from the doubled acid supps… :face_with_monocle:. Esophagus block 21:00 :x: :x: :x: - I think I shouldn’t have waited to try to let it go down, it’s just too risky, praps better to regurgitate after 5’. jaw 0x5’’ :white_check_mark: pee pain: interesting build-up from 15:00 to 16:30, see below :face_with_monocle:. No local pains from actions or postures, just the above and a severe Ache from moving longer than 1’.
MCAS/HIT-Symptoms/Triggers/Treatments: :white_check_mark: Except lack of real energy as ever. :x:. 16:30 face skin burning a bit. (Not just then(?))
Fibro & Touch: :white_check_mark:
Covid-danger: :white_check_mark:
Weather: Indoors :face_with_monocle: - waves of cold/freezing/sneezing & warm/feverish, but I doubt that’s the weather :white_check_mark:. Outdoors: dunno, wasn’t outside…
Urinary diary: :x: :white_check_mark: :face_with_monocle: 22:40 p0 22:35 p0 1:33 p0 3:50 p0 4:20 p0 5:45 p0 7:15 p0 9:54 p0 11:00 p0 13:05 p0 15:00 p1 :face_with_monocle: 15:35 p2 :face_with_monocle: 15:55 p3 :x: 16:30 p4 :x: 18:05 p0
Interesting to see what it might be: Apple is the only thing on a list of 6 whilst also (50g sheep) cheese & (30g) raisins, but not chocolate, hazelnuts or yogurt where things on a Cleveland Clinic list.

Treatments

Docs:
Chinese Acupuncturist - #25 on 21st :face_with_monocle: (Sleep & +25% GABA helping.) Session #26 on 2nd.

SELF-PHYSIO (click for details): 2h22'

:white_check_mark: airing 3x2’, cold shower 2x(10’), cream fc/ey/hd/ft 0x1’, teeth 3x2’, HWB 0x3’, breath exercises 3x1’, Timing, hunchback-pillow 20’, Y. Nidra 30’, massage gun 0x3’, neck 1+ 1x1’, neck 2 0x1’, plantar/calf stretch 4x1’, acupressure 0x1’, palpate 0’, belly 2’, back 10’, aloe vera 0x1’, twist-stretch 40x1’, yoga/stretching 0x1’.
Combine: next?
:x: 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 June 22nd (28 supps): Supp costs:~325€/m (Jun 27th) CHANGED: GenF20+?? (HGH and amino acids); Alpha GPC = choline alfoscerate? B3 flush free? CoQ10 with evening meal from July 20th! (unstuffs nose) Run out of vitamin B2 (R-5-P) July 14th. Reducing P5P too. NEW IDEAS: Copper in psyllium. Copper suggested by verywellhealth, Hagmeyer and now Robbins. PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B2, B3/Nia, Cu, Mum, Nc 1*.5g, (Nd), Pe, Ps, Rib, Se, Sr 31125k, Zn.
REGULAR as of Jul 22nd (>30 supps): ALA .2g, B2 0x50mg, B12 5mg/4m, C 2x.5g, Cr 6x0.6g, 0(-2) DAO before meals, D3 20.000 IE = 500mcg, + K2 (MK7) 200mcg, increased up to 2-3/w, EGCG 1x(50%, incl. theanine?).5g, EllagicA 2 → 3x.2g (+43mg vit. C), Fev .4g (+.2g MSM), Ga: 5x.6g=3g, Gi 3x168mg, Glu: 0.6+0.3g, Hon (2%)x2x.4g=16mg, Luteolin .2g, Ω3 1x5mg, Mg Gly 2x50mg, Mg Mal 2x45mg, P5P 1x27mg, PEA 1x0.4g Pf 5x.35g, pine bark 2x.5g, PQQ 1, CoQ10 (ubn) !1x.1g, Qc 4x.5g, Rs (50%) 2x.4g, Ro 2x.35g, Sa .1g, Sily (80%) 1x.5g (+83mg L-cholin) , The 2x.2g (+.15g polyphenols).
What-when-details: Updated Jun 27th (before: see the reference post)
19:50 A1/2 “19:00” PF#1+2 GABA#1 Cr#1+2, 2 mg mal, 0P5P, 2x50mg B2, 1PQQ, 5ml Ω3 & Qc. Meal: 0 DAO 1xHon. Q10.
Meal 20:20- Gum -
/21:35 A3 “21:00” PF#3 .6 GABA#2 & .6glu & 1Lut (slp!) & Qc 1xHon
0 Chamomile tea.
/01:35 A4 “23:00” PF#4 .6 GABA#3&.3glu#2 & Ellagic acid#1 + 0 Rupafin
0 B1 “01:00” PF#5
/11:15 B2 “07:00” +ALA+1x pine bark, (teeth) +1Ro
/11:15 B3 “07:00” (-30’) Qc Rs#1 SAM-e
/11:15 xB4 “07:00” EGCg + Fev/MSM + Sily +2The
0 DAO
/13:20 C1/2 “MEAL!” 2Cr#2 .6GABA#4, (C2:) 0x50mgB2, gink#1, 0 Zn, gly#1+2, ?1x pine bark#2 + vit.D3 2-3/wk.
/13:20 C3 “MEAL” .5gC#1 (0NAC)+PEA
Meal - Gum -
/12:30 C4 “11:00” (+2h/) gi#2 Ellagic acid#2
0 DAO (D1) “12:30” 0psyllium
/15:00 D2/3 “13:00” .5gC#2 , 2Cr#3, .6GABA#5, gink#3 DRINK!
Meal - Gum -
/18:30 D4 “17:00” (“meal/acids+2h”) Ellag#3, Qc#4.Rs#2, Nd#? +1Ro
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), Jul 22nd

Pf: 1A1+1A2+1A3+1A4+1B1, B2:0A1+0C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4+D4. 4-5xGa: A2,A3,A4,C1,D2, Glu: A3,a4 Gi: C2,C4,D3 2Gly:C2 Hon:A2.A3. 2Mal:A2 Qc: A2.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: 0P5+Q1 (->ubiquinone <150mg/d!):A2. A3: Luteolin A4: 0Rup! B2: ALA+1-2 pine B3:Sa. B4: 2Th EGCG&Fev/MSM&Sily C2:0Cu/Zn C3:PEA (A2:Ω/Pq:meal) DAO before every meal, usually only when risk?
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development

‘Research’ today:

ATP as supplement?

I was surprised to find a German supplement company favoured by myself for offering powders in pure high quality also offering ATP as a supp. I’d never heard of this being realistic, but they quoted studies here.

Pubmed had no direct results. So looking at the studies cited,
One found 5000mg ATP once just increased uric acid, another that using that amount regularly did only the same.
However a 3rd study using 400mg found it improved weight lifting, a 4th that it improves well-being by increasing dopamine (in rats), a 5th that the adenosine it creates reduces pain from being transmitted.
#3 Scientific study
Wilson JM, Joy JM, Lowery RP, Roberts MD, Lockwood CM, Manninen AH, Fuller JC, De Souza EO, Baier SM, Wilson SM, Rathmacher JA. Effects of oral adenosine-5’-triphosphate supplementation on athletic performance, skeletal muscle hypertrophy and recovery in resistance-trained men. Nutr Metab (Lond). 2013 Sep 22;10(1):57. doi: 10.1186/1743-7075-10-57. PMID: 24330670; PMCID: PMC3849389.
21 men. (full article shows connections to the producing company.)
#4 Scientific study
Ute Krügel, Holger Kittner, Peter Illes. Adenosine 5′-triphosphate-induced dopamine release in the rat nucleus accumbens in vivo. Neuroscience Letters. Volume 265, Issue 1. 1999. Redirecting.
+5 Scientific Review
Sawynok J, Sweeney MI. The role of purines in nociception. Neuroscience. 1989;32(3):557-69. doi: 10.1016/0306-4522(89)90278-9. PMID: 2689906. The role of purines in nociception - PubMed
#6 This study was also cited in a 6th (16 participants) not mentioned above, with a very slight positive outcome:
Adenosine-5’-triphosphate (ATP) supplementation improves low peak muscle torque and torque fatigue during repeated high intensity exercise sets.
Rathmacher JA, Fuller JC Jr, Baier SM, Abumrad NN, Angus HF, Sharp RL.J Int Soc Sports Nutr. 2012 Oct 9;9(1):48. doi: 10.1186/1550-2783-9-48.
“Supplementation with 400 mg ATP/d for 15 days tended to reduce muscle fatigue and improved a participant’s ability to maintain a higher force output at the end of an exhaustive exercise bout.”
This again was cited by
#7 Dose Response of Acute ATP Supplementation on Strength Training Performance.
Dos Santos Nunes de Moura HP, Jäger R, Purpura M, Rathmacher JA, Fuller JC Jr, Rossi FE.Front Sports Act Living. 2021 Dec 8;3:780459. doi: 10.3389/fspor.2021.780459. eCollection 2021.
" In this study, the effective minimal dose of acute oral ATP supplementation during resistance exercise to increase performance was determined to be 400 mg, while as little as 100 mg showed improvements in perceived exertion." (comparing 400 200 and 100)
#7a?

and
#8 Supplements with purported effects on muscle mass and strength.
Valenzuela PL, Morales JS, Emanuele E, Pareja-Galeano H, Lucia A.
Eur J Nutr. 2019 Dec;58(8):2983-3008. doi: 10.1007/s00394-018-1882-z. Epub 2019 Jan 2. PMID: 30604177 Review.
" Results: Among the supplements tested, nitrate and caffeine returned sufficient evidence supporting their acute beneficial effects on muscle strength, whereas the long-term consumption of creatine, protein and polyunsaturated fatty acids seems to consistently increase or preserve muscle mass and strength (evidence level A). On the other hand, mixed or unclear evidence was found for several popular supplements including branched-chain amino acids, adenosine triphosphate, citrulline, β-Hydroxy-β-methylbutyrate, minerals, most vitamins, phosphatidic acid or arginine (evidence level B), weak or scarce evidence was found for conjugated linoleic acid, glutamine, resveratrol, tribulus terrestris or ursolic acid (evidence level C), and no evidence was found for other supplements such as ornithine or α-ketoglutarate (evidence D). Of note, although most supplements appear to be safe when consumed at typical doses, some adverse events have been reported for some of them (e.g., caffeine, vitamins, α-ketoglutarate, tribulus terrestris, arginine) after large intakes, and there is insufficient evidence to determine the safety of many frequently used supplements (e.g., ornithine, conjugated linoleic acid, ursolic acid).
Conclusion: In summary, despite their popularity, there is little evidence supporting the use of most supplements, and some of them have been even proven ineffective or potentially associated with adverse effects."
and
#9 Randomized Controlled Trial J Int Soc Sports Nutr. 2016 Jun 10;13:25. doi: 10.1186/s12970-016-0136-9. eCollection 2016.
Twelve weeks supplementation with an extended-release caffeine and ATP-enhancing supplement may improve body composition without affecting hematology in resistance-trained men
Jordan M Joy
“A novel supplement containing ancient peat and apple extracts has reported enhanced mitochondrial ATP production…” This is the newest of several studies on this supplement.

Lessons in self-care #381 Really have to self-care like mad at the moment.
Reasons to be cheerful #385 Fulfilled day despite all the pain & fatigue.
Things I love about myself #69 Never give up. Almost never.