2022-09-13, Tuesday - Energy 9% / Sleep 85% / Feeling 85%-ish
Adding the new supps seems to be OK/good.
Realized how mindfulness helps me to swing between jumpin to the faith of solutions and swinging to dissolving problems like anxiety.
Looked up “typical” fibro meds, but mainly clarified that ribose increases triglycerides, so bad for me.
Bed “before” 10. Stop forums there.
Test pak choy for burning once tooth is thru.
Remember not to sit on couch!
Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (15%, stiff 15%) + spine-pain 3 (15%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (91%), insomnia 3 (15%), fog 2 (15%), headache 0, GI 1 (10%), depression 0
Triggers & resulting Symptoms
SLEEP (click for details): 8h52, up 6x (1h06) 🧐✅ ➔ Feeling ?90% well, Ache ?1 of 7 ✅, getting up: ?80%/?2 ✅. Nostrils 0% stuffy 90% of the night. Sitting on couch keeps causing lower back unrest, without me realizing, keep getting that, I don't know how I can remember except to keep my main laptop on my bar table and not on the couch.
cold shower p2 Sleep 22:50- Why not 21:45? Waiting for wife to get guineas done.
23:50 13’ 80%/1/10% p1 st1 sip fw10’
0:19 17’ 70%/2/10% p0 st1 sip fw8’ FCS#2 cos of LBU. dry mouth
2:09 5’ 80%/2/20% p0 st1 sip fw1’ air A4-GABA
3:07 7’ 80%/2/20% p0 st1 sip fw1’ air
4:50 20’ 80%/2/20% p2 st1 sip fw15’ air
6:30 6’ 80%/2/20% p1 st1 sip fw1’ air teeth ear plugs… stomach OK, considering GABA at 2 (nostrils)
8:15 5’ 80%/2/20% p1 st1 sip fw1’ air slight headache most of the night, (nostrils) B1-4
Sum: 1h10+8h48-(13+15+7+20+6+5=)1h06 = 9h58- 1h06 = 8h52, up 6x (1h06)
ACTIVITIES (aim: 40% energy) ➔ ACHE:
TT 2:0, felt good, no Ache, but wife said I looked terrible after pale white-yellow, short cycle-cycle ride in the evening similar, ➔ 80%/2 , but a stressed phone call from a mate needing help wasn’t good for 20’ (70%/3) - which I then told him, apologized.
ACTIONS ➔ PAINS: except: neck , GI , esophagus , jaw 2x5’’ , pee pain: 3xp1-2
MCAS/HIT-Symptoms/Triggers/Treatments: Fatigue better from acupuncture/sleep/cold showering as well probably as losing the CoV-antibodies. . 16:30 Walnuts ouch all evening, left side of my tongue.
Fibro & Touch:
Weather: Indoors Outdoors .
Tooth on Tues 6th. Stopped aching Friday to Saturday night. Severe 95% fatigue ongoing. Slightly better Sunday, worse Monday after gig, better than Sunday on Tuesday.
Immunologist via studies?
Chinese Acupuncturist - #28 on 9th, after 28 days Still good. Session #29 on 23rd.
SELF-PHYSIO (click for details): 65'
airing 3x2’, cold shower 2x(10’), cream/oil fc/ey/hd/ft 0x1’, teeth 2x2’, HWB 0x3’, breath exercises 3x1’, Timing, hunchback-pillow 10’, Y. Nidra 15’, massage gun 1x3’, neck 1+ 0x1’, neck 2 0x1’, plantar/calf stretch 0x1’, acupressure 0x1’, palpate 0’, belly 0’, back 4’, !!aloe vera 0x1’, twist-stretch 0x1’, yoga/stretching 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 Sep 5th (32 supps): Supp costs:~364€/m (Sep 8th) CHANGED: Added a little NAC & 2 Quercetin on Sep 11th. Added B2 again from 10th on. Copper doesn't seem necessary if my cardio interpreted my bloods right. From 8th on I'm adding the olive leaf extract low (100mg) and slow (but +100mg daily, not weekly), also fisetin I think it was then. Boosting some things from 7th on for tooth. Trying 1x150mg alpha GPC for fatigue from Sep 5th (recommendation on a forum), can add a few when I'm safe. Pure ATP 400mg in liquid was bad, so at most I may encapsulate & start with less, 100mg. Can't explain pee pain on Sep 4th/5th unless additional stress from a gig. Taking 1x B3 flush free since 25th, 2x from 31st (then checking homocystein). New idea: Creatine. PLANNED/TAKEN TODAY: click for details:
ZERO now: Arg, B2, Cu, Mum, Nc 1*.5g, (Nd), Pe, Ps, atm !Qc, Rib, Se, Sr 31125k, Zn.
REGULAR as of Sep 5th (32 supps): ALA .2g, alpha-GPC 1x150mg, B2 0x50mg, B3/Nia 50g, B12 5mg/4m, C 2x.5g, Cr 6x0.6g, 0(-2) DAO before meals, D3 20.000 IE = 500mcg, + K2 (MK7) 200mcg, stopped increasing that, EGCG 1x(50%, incl. theanine?).5g, EllagicA 2 x.2g (+43mg vit. C) after a short break, Fev .4g (+.2g MSM), Ga: now 4x.6g=2.4g, Gi 3x168mg, Glu: down to 0.6g, Hon (2%)x2x.4g=16mg, Luteolin .2g, Ω3 1x5mg, Mg Gly 2x50mg, Mg Mal 2x45mg, P5P 1x27mg, PEA 1x0.4g Pf down to 3x.35g, pine bark down to 1x.5g, PQQ 1, CoQ10 (ubn) 1x.1g, no Qc 0x.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 Sep 5th (before: see the reference post)
/20:10 400mg GABA A1/2 “19:00” PF#1+2 GABA#1 Cr#1+2, 2 mg mal, 0-1P5P, 0x50mg B2, 1PQQ, 5ml Ω3 & 0Qc. Meal: 1xHon. Q10.
Meal -21: Gum -
/22:50 400mg GABA A3 “21:00” PF#3 .3-.6?GABA#2 & .3-.6?glu & 1Lut (slp!) & 0Qc 1xHon + 0 Rupafin
3:00? + GABA
/08:15 B2-4 “07:00” +ALA+1x pine bark, (teeth) +1Ro, 0Qc Rs#1 SAM-e EGCg + Fev/MSM + Sily +2The
Meal 10:-: Gum 10:-11:
/10:30? C1-3 “MEAL!” 2Cr#2 .6GABA#4, (C2:) 0x50mgB2, gink#1, 0 Zn, gly#1+2, 1x pine bark#2. .5gC#1 (1 NAC)+PEA + Rutin + vit.D3 1/wk. + 1x alpha-GPC.
/13:15 C4 “11:00” (+2h/) gi#2 1 Ellagic acid#1
0 Meal -16:25 Gum - (D1) “12:30”
/15:55 D2/3 “13:00” .5gC#2 , 2Cr#3, .6GABA#5, gink#3 DRINK!
/19:30 D4 “17:00” (“meal/acids+2h”) Ellag#2, Qc#4.Rs#2, +1Ro
“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), Sep 5th
Pf: 1A1+1A2+1A3, alpha GPC:C2. B2:0A1+0C2 C:C3+D3 3x2Cr: A1+C1+D2, Ell: A4,C4+D4. 4-5xGa: A2,A3,C1c2,D2, Glu: A3,c1 Gi: C2,C4,D3 2Gly:C2 Hon:A2.A3. 2Mal:A2 Qc: 0A2.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: P5+Q1 (->ubiquinone <150mg/d!):A2. A3: Luteolin B2: ALA+1 pine B3:Sa. B4: 2Th EGCG&Fev/MSM&Sily C2:0Cu/Zn C3:PEA+B3 (A2:Ω/Pq:meal) DAO before risky meals?
(A2:0Se), (B2:0mu), (0Nc: A3, B1,C1,C3,D2)
gabapentin/Neurontin and nortriptyline/Pamelor
The fact that gabapentin/Neurontin hasn’t been tested for fibro doesn’t to me mean that it’s useless, esp. cos it is proven to help pain generally and does help some.
But what I “don’t understand” is that despite that medical evidence some people are given it as a first or only choice, instead of trying FDA-approved pregabalin/Lyrica, duloxetine/Cymbalta and the at least equally well proven amitriptyline first.
And interesting is that the category “FDA-approved” doesn’t mean that much, theoretically and practically, as milnacipran is 3rd one, not amitriptyline, whilst that has more evidence and is also used much more for fibro.
And nortriptyline/Pamelor not being offered much either I’ve heard again was the price. Drugs com confirms it’s a bit more expensive (twice as expensive per unit), but that’s still only half of pregabalin and gabapentin.
Some experiences are negative, but as amitriptyline is converted into nortriptyline in the liver it is generally thought to have less side effects than that.
BTW, nortriptyline has been proven similarly good to amitriptyline a few times.
A list of the other meds that work for some:
“Medications with the best efficacy in the treatment of FM include the tricyclic antidepressants amitriptyline and nortriptyline, cyclobenzaprine (a skeletal muscle relaxant), tramadol, duloxetine, milnacipran, pregabalin and gabapentin. Corticosteroids, nonsteroidal anti-inflammatory drugs, benzodiazepines and opioid analgesics, with the exception of tramadol, are not considered efficacious. Medication selection should be individualized and influenced by the severity of illness and the presence of comorbidities and functional disabilities.” (Fibromyalgia: disease synopsis, medication cost effectiveness and economic burden, a 2014 review in “Pharmacoeconomics” by Tracy Skaer, professor at WSU).
A similar list to above, but minus tramadol and plus citalopram, fluoxetine, paroxetine & cyclobenzaprine (Drug Class Review: Drugs for Fibromyalgia: Final Original Report, 2011)
This article from 2020 Current and Emerging Pharmacotherapy for Fibromyalgia doesn’t mention nortriptyline, can’t see why, and mentions
Reboxetine (only case reports) Esreboxetine (1 trial) Nal trexone (1 trial; if depression) (1 trial) Nabilone, Dronabinol & Memantine (all with conflicting results) Ketamine (1 trial) and the newcomer is… “NYX-2925” (works in rats).
That’s where pharma research is going…
Much more interesting I found the last bit, the conclusion and expert opinion. Saying: there has been great progress in inflammatory and autoimmune disorders, but CNS conditions like fibro are baffling everyone, so experts are going to have to network. They don’t think it’s likely that there will be much progress in the med types currently used. One hope is to sort and treat patients based on their individual genetic (and pharmacogenetic) characteristics, plus analysis of the pathways bits of the brain connect to one another (connectivity ). Another, associated to this connectivity is how the endocannabinoid system works, which is much researched now, and will help develop meds with precisely measured quantities of cannabinoid agents such as THC and CBD (!) Understanding neuroinflammation may also help (see na ltrexone, which is in L D N). Lastly they stress that managing FMS most definitely will always be more than meds , namely tools “ranging from exercise to neurofeedback and all that lie in between. Thus is the art of treating FMS.” Yeah.
Looking at the placebo effect in fibromyalgia med studies it’s interesting to see how high it actually it is. Or perhaps we can say how little better the meds are…
The meta-analysis Placebo effect in pharmacological management of fibromyalgia: a meta-analysis from 2021 found: “The administration of placebo has proved to be more effective than no treatment in many clinical settings and evidence supports the ‘therapeutic’ effects of placebo on a wide range of symptoms. The placebo effect is believed to impact the clinical outcomes, but its actual magnitude is controversial. Drug treatment resulted to be more effective than placebo administration for the management of fibromyalgia. Nevertheless, placebo showed a beneficial effect in patients with fibromyalgia. Treatment-related adverse events occurred more frequently in the drug treatment.”
I remember getting a riddle in my teens I later learnt was a kind of kōan, similar on happyho:
“A great philosophical official, Riko, once asked this strange Zen master, Nansen, to explain to him the old Koan of the goose in the bottle. ” If a man puts a glossing into a bottle” said Riko, ” and feeds him until he is full grown, how can the man gets to goose out without killing it or breaking the bottle?” Nansen gave a great clap with his hand and shouted, “Riko!”
“Yes master” said the official with a start
” See, ” said Nansen, ” the goose is out!”
It is only a question of seeing, it is only a question of becoming alert, awake, it is only a question of waking up. The goose is in the bottle if you are in a dream, the goose has never been in a bottle if you are awake. and in the dream there is no way to take the goose out of the bottle. Either the goose will die or the bottle will have to be broken and both alternatives are not allowed: Neither the bottle should be broken nor has the goose to be killed. Now a fully grown goose in a small bottle … how can you take it out? this is called a Koan.
A Koan is not an ordinary puzzle, it is not a puzzle because it cannot be solved. A puzzle is that which has a possibility of being solved. You just have to look for the right answer. You will find it – it only needs intelligence to find the answer to the puzzle, but a puzzle is not really insoluble. A koan is insoluble, you cannot solve it you can only dissolve it. And the way to dissolve it is to change the very plane of your being from dreaming to awake fullness.”
To me in that kōan sense, your glass is half full. Building on that it is full.
Dissolving the problem is one way of seeing it, looking back to it. But in my life the problem dissolved best and automatically when I was able to take a leap of faith to the solution. I’d long known of being in the Here and Now. But it was the image of standing safely on firm ground before a chasm that suddenly brought it home and finally relieved anxiety in 15 areas, starting with my fear of height (now down from 80% to 1%). Only after that clicked did I realize it was the concept of Here and Now.
Dissolving my fears = inner films of what happened in the past or what could happen in the future can work, but done in the wrong way we get triggered and stuck. Like do NOT think about pink elephants. Do NOT be afraid. “Just relax!” “Be spontaneous!” Yeah, sure!?
There are ways I do manage and even have to dissolve inner films: One is submerging myself into my pain, which I learnt when coping with social anxiety (face - accept - float - let time pass), and is very useful now - it then loses all meaning and suffering, realizing that distraction made it worse, when I concentrate on it. Another is decelerating my chatterbrain at night like turning a spool of film slower and bringing it to a stop on a frame, but holding it there. A third is after I’ve dreamt or imagined a catastrophe to turn the spool backwards again. A fourth reimagining and reframing (nightmare therapy: seeming sharks become dolphins, someone chasing me becomes someone bringing me my wallet back etc., falling becomes flying etc.)
I’m now trying to think thru why I was plugging “the leap of faith to the solution” first and now have found many examples how I try to “dissolve the problem”…:
In the case of direct fear of what might happen (fall etc.) I can do this as well, I can face and ‘surf’ on the panic and dissolve it (or partly). But usually now I try to concentrate more on the sensation that I am safe Here and Now. And Now. And Now. That’s reminding and practicing and habituating at the same time.
Ah, I think there’s a time when this is too late, when the panic is too big, maybe that’s when I go into dissolving mode. And then swing back to the faith/mindfulness.
Many things need to be learnt, practiced, become a habit, but it’s much accelerated when the solution to a mind screw suddenly “clicks”, we finally make a firm unwavering decision to see it that way, and then can work thru it and refinish all the bits left by practice and habituating. The fundamental one there is probably again Radical Acceptance.
That may be why I nowadays am able to implement new habits after 3 repetitions instead of 30. What hampers self-discipline somewhat is all the flow in my head, all my new ideas, which is however very useful for enjoying life to the full, good days or bad, so that’s OK for me.
May our internal glass always become so full that we can dissolve the external ones some day…
Of course I’m listening up to anything I’ve missed for “extreme fatigue”, my main issue…
I’ve tried many a time, first it seemed to help, but caused some GI problems if more than 2g, then it never helped again. So I’ve never tried taking it for a few weeks like some recommend.
So I just thought thru it again and remembered that someone recently had said it’s not a sugar like other sugars. Which’d be good, cos that’d be something I have to avoid. And I actually found that on draxe: It may even decrease blood sugars it says there. However the reference is to a site which I’d have to sign up for, consumerlab. But healthfully is clearer and cites a 2008 study by a Dr. Oz which showed that injected 10g ribose considerably reduced blood glucose in diabetes inside of 30-45 mins, but only for 1-2h. Well whatever, that does not make it a “good” sugar, rather a strange one. But he definitely does recommend it, starting with 3x0.5g/d for a week, then 3x5g/d for 3 weeks, and then staying on 2x5g/d.
But what about lipids? My main problem… Looked again, and sure enough: D-ribose increases triglyceride via upregulation of DGAT in the liver (2019 study). At least in rats. Other than that this hasn’t been researched yet.
Looking for more recent studies that quote this one on pubmed I also find one from 2020 D-ribose and pathogenesis of Alzheimer’s disease saying: “Since, D-ribose shows highest glycation ability among other sugars hence, produces advanced glycation end products (AGEs) rapidly. However, there are several other mechanisms suggested by researchers through which D-ribose may cause cognitive impairments. There is a concern related to diabetic patients since they also suffer from D-ribose metabolism, may be more prone to AD [= Alzheimer Disease] risk.”
Similarly this study from 2019 D-ribose is elevated in T1DM patients and can be involved in the onset of encephalopathy. (T1DM = type 1 diabetes mellitus) says that lowering that ribose helped in rats, so will thus be a possible help in people. Which takes us back to what I said above: It lowering glucose for a short while (probably by stimulating insulin production) doesn’t have to be something good.
Now is diabetes relevant to me? My symptoms often remind my wife of diabetes.
Is dementia relevant to me? My dad “died of” it.
Is it increasing lipids dangerous for me? Highly.
So: No, not for me.
Lessons in self-care #421 Always watch my backside!!
Reasons to be cheerful #424 Better!