JayCS’s Fibro Blog

2021-06-11, Friday

Sleep: 8h55, up 5x (2h15) :left_right_arrow: Feeling 60% well (messed up sleep/dozing; subjectively 90%), pain 1 of 7 (:white_check_mark:)

Sleep details: a lot of dozing

19:00 tired
20:00 passiflora (& atorvastatin). Just realized that there was also a lot of maize in the salad yesterday and I have no idea what that does to me at the mo…
21:05 300mg capsule GABA. Still able to put my night socks on standing, due to the acupressure :white_check_mark:
21:15- bed; dozing, so
21:55 10’ cold shower (no GI, but witch hazel all the same; & thumb), pee, drink,
23:45 20’ still feels like dozing, but somehow also deep sleeping, never managing more than a minute of AutTr, pee, drink, + GABA 450mg, RR 152/91 61, 133/88 58, before and 130/80 59 after peeing… too high for night… but praps moving around a bit at night does that?
0:30: 1h still dozing, but all OK, maybe 6?
2:20: 30’ still dozing, still wind 4x/h, stomach burn coming up, so Gatricumeel and soy drink…
dry mouth :arrow_forward: dry mouth gel :white_check_mark:
6:20p dry mouth :arrow_forward: drink RR 125/78 52 127/80 56 (My wife said afterwards I looked really bad/dead tired - deathly pale grey-yellow.)
7:40p 15’… last remainders of the IBSD and my rectum is hinting that it’s still Wednesday’s tomatoes, whilst the witch hazel is taking the most part of the barb.
-8:25
2h45+8h25-(10-20-1h-30-15=)2h15 11h10-2h15=8h55 5x up (2h15)…
Sum: = 10h10, up x (')
Has the night-before-Friday, i.e. after-Thursday-6am always been rough?
Am I gonna manage to make the weekend better, like last week?
Are the nights after Thursday worse than those before? (Not just the days.) Analysis below

Activities: 4h45
Feeling 90% well, pain 1 of 7 :white_check_mark: All went well, despite looking dead at first.

Activity-details: live work 2h50, cycling 42', TT 7:(1)!! 1h10 - effortless!! (Why?)

Live work: 10:30-13:20 2h50
Cycling (expected) 8+8+8+8+5+5=0h42
TT 7:(1) dead easy, totally relaxed. 1h10

Treatment: 1h20 (self) (fw 4h30)

Effects of !300+!450mg GABA (!both in capsules), 2x290mg passiflora (no more L-dopa)...

GABA: I’m not that pleased with the night, maybe a higher dose’d help, at least at first (400+350), or go up to 900. Or is that only helping at daytime?
Passiflora: Try more? Since that is more for sleep than GABA is.
L-dopa: Also unsure about leaving it completely, as it was quite OK when I started, so going back to 50mg might be OK.
My blood pressure was too high tonight…

Effects of acupressure on my loins and generally is lasting ... all day! :-)

I could still put on my shoes standing with no problems all day
(Just for the record: acupressure itself is about 1h30 but what with cryotherapy, breaks, resting and talking afterwards it’s usually about 2h. But that’s her time as well as mine… again something she’s not charging for…)

Physio-type self-treatments: 1h20, fibro-work 4h30

*:white_check_mark: Timing, cold shower (10’), gums 3x, thumbnail 7x, RR 8?x2’, AuTr 10’, hunchback-hard-cushion 20’, neck 1+ 6’, palpate 2’, belly 2’, back 6’, neck 2 2’, shaking dance 3’, = 80’…
:x: workout ', yoga ', loins ', marionette-hang ', breath-hold ', *
Fibro-work: Night: 30’ 7:45: 10’ 8:25: 1h 14:08: 1h05 15:50: 1h05 18:30: 40’ = 4h30

Did the IBSD come from the maize/corn? Doubt it. I'll watch out if there's a next time.

Check what maize/corn can do with the gut… e.g. IBSD… and also cardiovascular, as high in sugar? But when my wife buys ready packed convenience salad, there is often also maize in there, can’t recall problems there. I do think I shd keep it down cos of the sugar tho. BTW wind several times an hour all night - that’s not the GABA, altho that praps causes a little.

RR high at night

23:45: 152/91 61, 133/88 58, before and 130/80 59

Development:
Managing all this fibro-work/self-treatment as well as working again is like when I was working: Only caring about the spinning plates that are about to fall and being content that the rest are spinning, even if it doesn’t nec look like it. I remembered this mental hack of mine when my wife reminded me yesterday that I am not just “working” at work. … When a full flare has taken over I of course have to do the opposite: Start with one single plate again and again… (Maybe another one than I thought.) This is my fave funny plate spinning video to date…

Sleep analysis: Getting up early mucks up the following night(s), as does L-dopa 100mg.

2021-05-17 Mon - 9h20, up 5x (35’)+25’=9h55 GABA down
2021-05-18 Tue - 9h20, up 4x (55’)+1h45=11h05
2021-05-19 Wed - 8h10, up 3x (25’) + 35= 8h45
:one: 2021-05-20 Thur - 8h40, up 4x (35’)+30’=9h10 (First time up at 6:20 → problem sleeping thru.)
2021-05-21 Fri - 8h10, up 4x (2h40) (sleep late, waking early; 1st levodopa 50)
2021-05-22 Sat - 8h30, up 2x (10’)
2021-05-23 Sun - 9h20, up 6x (30’)
2021-05-24 Mon - 9h50, up 4(-6)x (1h10) despite gum pain
2021-05-25 Tue - 8h50, up 4x (25’)
2021-05-26 Wed - 9h20, up 3x (1h10)+1h20=10h40
:two: 2021-05-27 Thur - 8h10, up 4x (1h)+40’ = 8h50 (up at 6:20, together with overexertion: much longer sleep.)
2021-05-28 Fri - 9h, up 4x (1h05)
2021-05-29 Sat - 10h30, up 3x (20’) (overexertion) (still little GABA) :arrow_forward: shdve been more
2021-05-30 Sun - 10h15h, up 3x (35’) (late & dozing a lot)
2021-05-31 Mon - 10h07, up 3(-4)x 33’
2021-06-01 Tue - 9h35, up 3x (40’) (slow day, increasingly - foggy)
2021-06-02 Wed - 10h50, up 4x (20’) (back up to 900mg GABA - great day)
:three: 2021-06-03 Thurs - 8h50, up 5x (30’)+55’=9h45 (up at 6:20)
2021-06-04 Fri - 9h10, up 4x (1h35)
2021-06-05 Sat - 9h10, up 6x (1h)+20’=9h30
2021-06-06 Sun - 9h35, up 5x (1h20) (Creativity kept me awake)
2021-06-07 Mon - 10h15, up 7x (1h45), levodopa up 100mg less sleep, more LBU
2021-06-08 Tue - 8h25, up 5x (3h55) levodopa 100 → problem sleeping thru.
2021-06-09 Wed - 10h10, up 4x (35’) levodopa 0mg
:four: 2021-06-10 Thurs - 7h40, up 4x (55’)+1h55=9h35 (up at 6:20 → problem sleeping thru, despite morning nap.)
2021-06-11 Fri - 8h55, up 5x (2h15)
Getting up at 6:20 :one: & :four: :soon: direct sleep problems the night after (3-4h), or
:two: coupled with overexertion much longer sleep, not up much, but very unrestorative, or
:three: medium sleep problems (1h+, up 4-7x) 3 nights after.
The latter made me decide to try :arrow_forward: levodopa, which backfired, so the sleep problems got worse (4h) :x:, despite Thursday coming up.
It was :one: that made me start levodopa on the minimal dose, with no effect.
Trying to carry on sleeping (2h) after work didn’t work in as much as the night after went wrong again.
:x: I can’t see I shd try l-dopa again at the mo.
:arrow_forward: I need to keep the GABA up, praps even more, esp. as pee pain is cropping up in the evenings before the next dose.
:arrow_forward: What I cd tweak next is trying more passiflora a 2nd, longer, time, or adding Mg again.

Conclusions:
:arrow_forward: More passiflora for longer.
:arrow_forward: GABA once in the daytime?
:arrow_forward: Earlier to bed, especially Tuesdays & Wednesdays & thus :arrow_forward: eating earlier.

Abbreviations & explanations: a bit new and lots rearranged from 2021-06-10 on

Entries start with night meds & sleep, before activities & treatments, because the “night before” is vital. So Fri-day starts with Thursday night, the night before Friday.

Pain "7" = crying (/out) point; my 1 is others 2-3, and due to pacing/treatments

My wife says my 7 is other people’s 12. 1 is probably 2-3. Due to pacing, keeping work down to 25% (12h/wk) and all my treatments (acupressure, GABA) and physio self-treatments I manage to keep getting my pains & Ache down quickly. 3 usually means the Ache, not pains; these I address individually, often automatically and on the fly now, e.g. twist-stretching everything or something specific after getting up.

TIME DATA, e.g. ' = mins, h = hours, 18:10:40', date YYYY-MM-DD

’ = mins = minutes, ‘’ = secs = seconds, h is hours as time length, 3h is 3 hours long, 3:00 is 3am, 15:00 is 3pm. 18:10:40’ means 40 minutes, starting at 18:10, = 10 minutes past 6pm up to 10 to 7pm. The date is the logical digital standard: YYYY-MM-DD.

SLEEP: slp, w, lbu/LBU, RLS, p, i

slp = sleep; reasons for getting up: w = (a)wake, lbu/LBU: lower back unrest (‘RLS’?), p: pee, i: ideas.

ACTIVITIES: TT, e.g. "5:1"

TT = table tennis, 5:1 = score, usually showing how well I’m feeling: energy, relaxedness & alertness if the first number is much higher than the second.

SELF-TREATMENTS (about everything else...)

The self-treatments listed are only things that I’m spotlighting & rewarding myself for at the mo by counting them; much of what I do at night is self-treatment to get back to sleep or alleviate (1-2h/d), certain regular movements at daytime, like twist-stretching (30’), writing this blog is self-treatment (30’-60’/d), and the further fibro-work is an indirect form.
Self treatments are usually preventative or always have the same positive effect (e.g. cold showering improves Ache and sleep) - at least I do them for that - and I use “:arrow_forward:” to show what I’m doing to alleviate something and mark it off in the details “:white_check_mark:/:x:” whether it works well enough for a time or doesn’t’, e.g. Ache :arrow_forward: cold fast shower “:white_check_mark:
fw = fibro-work, meaning reading and writing this blog, the reference base, on 4 fibro-forums and researching fibro-stuff on the web.
AuTr = Autogenic Training (usually to actively get - back - to sleep, so counting it as sleep and AuTr…),
cold/FCS = Flash Cold Shower (20’‘-60’’) , I count it as 10’ tho.
breath-hold/WHM-B-H = Wim Hof Method Breath-Holding,
Neck 1 is stretching top right to bottom left, vice versa & sky/ground, neck “1+” is stretching far further diagonally downwards, neck 2 is pressing my head against my hand “without moving”, left right and front.
loins = loins/groin = stretching the ligaments there.
ex = exercises
HWB = Hot water bottle,
RR = bp = blood pressure (Riva Rocci), plus pulse. Used to be normal, plus sometimes white coat syndrome, went up since fibro, seems to have gone down again, but I’m still sort of on meds, candesartan 16mg, instead of 8mg plus lercanidipine, cos I saw that c. has less side effects.