JayCS’s Fibro Blog

[JayCS]

2021-06-14, Monday

Sleep: 9h40, up 5x (25’) Feeling 90% well, pain 1 of 7

Sleep details

Passiflora 20:25, GABA 750mg 21:10
21:15- Using normal pillow again helped again.
22:50p heavy/achey limbs & slight p-pain. Too much GABA or not enough or what? (Feet a bit cold, only 2 pairs of socks ;-))
0:25p not as achey, no p-pain.
1:40p p-frequency seems increased. Hungry: Too much GABA? (Are these capsules not gastroresistant?)
4:10(p) No longer hungry! +300mg GABA… =1050mg.
6:20p dry mouth & drink almost every break
-7:20
Sum: 2h45+7h20-(5-5-5-5-5=)25 = 10h05-25= 9h40, up 5x (25’)

Activities: 5h40… Feeling 85% well, pain 1 (TT: 2) of 7

- everything seemed OK, but TT was a total struggle

OK: eyes, energy, suppleness, awake, ‘no’ pains, no distractions. But: precision wonky, I may have started relaxed, but I was only able to get points with utmost concentration & energy, which caused strain & a bit of Ache. Whereas the last few days it was a piece of cake . : why

Activity-details: Work 2h15, cycling 50', music 1h20, TT 1h15 3:5 hard!

Digi-work 8:40: 10’, Live work: 2h05. Just realized I’d forgotten to count sth. the last 2 weeks, so I’ve been working 9-10h, actually, and at the moment seem to be increasing doing additional tasks. So it’s slowly going up from 17% to 25% of what I used to do.
Cycling (expected) 8+8+8+8+5+5+4+4=50’?
Music 14:00 50’
TT 16:05-17:20 3:5 hard, no idea why, it felt exactly like the days before. Missing acupressure? TT was brilliant/easy Thursday, and great/easy on Friday and Sunday too.
Music 17:30: 30’

Treatment: 48’ (self) (fw 1h30)

Effects of !750+!300mg GABA (!both in capsules), 2x290mg passiflora (no more L-dopa)...

750mg at 21:10, 300mg at 4:10. Great night, but very thirsty. Maybe that’s what made me have to get up 5x. Eyes very closed, but seem to have had enough deep sleep, so decided to wake myself up.

Effects of acupressure...

Loins still great.
But why was TT such a struggle today, after a good night & easy day, and easy playing Th/Fr/Sun?

Physio-type self-treatments: 48', fibro-work 1h30

* Timing, thumbnail 8x30’’=4’, gums 1x, RR 3x2’=6’, palpate 2’, belly 2’, back 7’, workout 6’, cold shower (10’), neck 1+ 6’, neck 2 2’, marionette-hang 2’, = 48’…
AuTr ', hunchback-hard-cushion ', yoga ', loins ', breath-hold ', shaking dance ', *
Fibro-work: Night: 0 7:35: 1h05 8:55: 5’ 9:05: 10’ 18:00: 10’ = 1h30
Fibromyalgia References: Symptoms, triggers, treatments (to be intertwined) - #21 by JayCS

RR perfect check, perfect result 116/74 51

Perfect check: sit 5’ before, 2-3x a go, 1’ in btw., avg. of the last, 3x a day, esp. mornings, arm horizontal.
7:27 125/79 52, 7:30 119/78 54, 7:32 113/74 49, 7:34 119/73 53, avg. = 116/74 51

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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.

[JayCS]

2021-06-15, Tuesday

Sleep: 9h, up 4x (1h20) Feeling 90% well, pain 1 of 7

To tame myself: A big “No!”-post-it on my screen. Write down exact times for sleep breaks (& fw?), not rounded. Preferably no making music after 15:00 until I’m tamed more…

Sleep details

Passiflora 20:30, GABA 21:05
21:20-
23:30: 20’ (p) pain-b4-pee: 3 of 7. Tooth pain every now & again in the last few days, e.g. when stretch-twisting my neck. 2x drink
0:23: 25’ dozing; praps up too long just now, twitchy shoulder, thumping pulse, hot flush (put on warm socks - too much in the heat?) → 6.
1:09: 30’ dozing; shoulder better, but still pulse & hot flush. i: music/earworm (= putting one chord softly later, using a plop organ instead of a piano; did it too late; work a bit too) RR 7x & CFS. 2nd socks off again. If this is the result of being up too long in the first sleep break then it wasn’t worth it. Neck not too good, I think cos I started off with the small pillow by mistake.Gums a slight bit irritated too, repeat gums & do Marigold. Dry mouth → drink first.

I’ve put an enormous red digital post-it in front of all this, saying “NO!FW”, let’s see…

5:35p no p-pain, but stiff pain, + 350mg GABA. sore throat/cold: Drink, Marigold, 2nd socks back on.

And write down the exact minutes, not rounded to 5’, so I no longer round my sleep break to 5’: Every minute counts

7:40p 24’ all good again, warmed now. Dry mouth → drink. Trying successfully 10’ to get a frightened pigeon out of the bedroom despite a fly screen it kept flying into has ever so slightly disturbed my trance, let’s see if I can still sleep further. Aw, no, besides I need to get up a bit earlier and go to bed earlier instead.
2h40+7h40-(20-25-30-5=)1h20=9h, up 4x (1h20)…

Activities: 3h45 Feeling 90% well, pain 1 of 7

Table tennis apparently too relaxed first, I suspect cos of too much GABA…

Activity-details: Music 1h40, cycling 40', TT 0!:6, then 4!!:6, 1h25

Music 40’, then music lesson 1h (standing all the time!, but getting fidgety, Achey, unrelaxed).
Cycling 8+8+10+10+5=41
TT was totally strange . I’d expected to win like last Thursday. When I realized the balls were not doing at all what they were sposed to I decided to relax even more, feeling I was getting into a strained mode. The first 6 games I had no chance. But I had all my energy as I had been relaxed the whole time and acupressure before had given me 100% energy. For the 7th I pushed myself to put more energy into it. Then suddenly I started getting balls & points without too much energy, playing more precisely. Other factors like thirst and tooth-gum pain stayed the same, slowly needed to pee. My mate was getting tired, but that doesn’t explain why I wasn’t and why the precision - fine motor skills - was back. As opposed to Thursday I’d slept pretty well, had a a good day. It doesn’t really change the fact that GABA seems the most likely problem, in comparison to Thursday: too much. Also my pee-pain is slightly increased today, which is what it was sposed to be improving, so there’s not really a reason to keep it up at 1100mg, unless someone can explain or point out something else to me???

Treatment: 4h30 (1h15 self, 2h20 acupressure, 55’ therapy)

Too much GABA, I suspect

Effects of !750+350mg GABA (!both in capsules), 3x290mg passiflora: too relaxed!!

Keeping the same dose as yesterday to see if acupressure may be the difference to make TT easy again. I took it quite a bit later tho, at 5:35. I had good energy, esp. 100% after acupressure, full speed cycling without exhaustion. TT - see above - showed if at all that it relaxed me too much to be able to play precisely, until I hyped myself. And pee-pain several times around midday suggests that more doesn’t mean less pain, altho I don’t understand how that works.

Effects of acupressure...

Loins still great before, she treated them again, afterwards loads of energy and relaxation. But I had the same relaxation on Thursday.

Physio-type self-treatments: 1h12, fibro-work 2h15

* Timing, AuTr 10’, gums 2x30’’, hunchback-hard-cushion 15’, thumbnail 14x30’’, RR 7x2’, neck 1+ 4’, cold shower (10’), palpate 2’, belly 2’, back 5’, = 72’…
workout ', neck 2 ', yoga ', loins ', marionette-hang ', breath-hold ', shaking dance ', *
Fibro-work: Night: 10’ 23:35: 15’ 15’ 8:05: 18’ 17:45-19:12: 1h27 = 2h15

RR: 1:25 avg: 127/74 52, too high for night. Q: Is it the pressure making the low pulse thump the last few days? At night my shoulder was twitching due to the thumping pulse. When I realized that I cd just leave it and do AuTr instead.

Therapy 55': Not learning hygiene, not getting love from my parents, !!seeing how they put work, formalities etc. before self-care shows how much self-care I've taught myself. As a guideline for my actions I can consider whether what I'm doing might be automatically copying my parents (that's nothing really new or helpful):...

Today, I started off reporting my thoughts on allowing myself to do a bit of fibro-work at night etc., my GABA adjustments and successes, e.g. drinking water and getting up at 6:20.
Main question / task from my psychologist today was to think about which belief systems I have or may have adopted from my parents regarding health. Main points were that both my parents cdn’t much regard their opposites (incl. us kids) as a “You”. My father (introvert) saw/treated people as objects, incl. me and himself, she analyzed fittingly. My mother (extravert) is vague, everywhere and nowhere, like a butterfly, but can’t really listen or explain her own feelings. My psychologist was pretty shocked that they didn’t show/model/teach me/us any hygiene, which meant I smelt as a kid until my first girlfriend shyly told me and I started learning it myself, not really possible as my mum didn’t wash more and didn’t allow me and wdnt teach me to use the washing machine myself. And a lot of similarly unpleasant stuff, humiliating, causing anger…

My blog-summary and My fibromyalgia-references

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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.

[JayCS]

2021-06-16, Wednesday: 30 tiny stressors took their toll at the end of the day

Sleep: 8h55, up 7x (44’) Feeling 90% well, pain 1 of 7

Sleep details: 1h stints; writing down the exact times & cold showering helped curb break lengths & a creative flash; no "reason" for break frequency: so 'biochemical'?; very dry mouth again, despite drinking

Passiflora 19:15, GABA 21:15
(21:30-) creative music flash I had to immediately “write” down…15’
22:00-
23:42 3’ p thumb dry mouth → drink, lips, gel
0:53-1:12 19’ p thumb music16’ dry mouth → drink, doze/AuTr →
2:17-2:26 9’ p thumb FCS thumb drk
3:24-3:28 4’ p thumb teeth
4:32-35’ 3’ p thumb
6:14p 6’ (2’ wait) thumb. Tooth-gum has behaved, but I can feel it’s still sore like after a treatment, so Marigold later. fw 5’ altogether.
7:17 14’ hungry → drink, tired, slight pain in front of left thigh → Traumeel (fw 3’) p (0 pain like all night), thumb, music: 5’
7:41
2+7h41-(3+19+9+4+3+6+14=)44’ 9h41-44’=8h56, up 7x (44’)

Activities: 4h50 Feeling 90 → 80% well, pain 1 of 7 /

Well: My wife’d say 70%. OK: to be honest she’d say: 30%, but she counts funny… . Exhausted from doing - I thought - nothing much…

"If you want to know what 'nothing' was... - 30 "tiny" "annoyances"..

1. Didn’t start in time for the earlier train to work, so didn’t pressure, but then time was short for the next too…
2. My son called while I was trying to get the train, so I cut his call off.
3. Phone with him on the train - stress trying to please his girlfriend and ex at the same time, about where his daughter should be where - special situation as his daughter had hurt herself quite a bit in a bike accident on Sunday. Me trying to counsel him what to do, him asking me medical questions (Me: Well what did the docs say?) instead of more fitting communcative ones.
4. Took quite some time to find out what he actually wanted, as he was a bit beside himself.
5. Offered to perhaps come late that afternoon for a short time, after he misunderstood what my wife meant when she had told his ex that we could come round if they needed help and we’d sorted out what that was about.
6. It’s always hard to understand him as he puts the loudspeaker on and I keep having to ask what he just said. The train noises didn’t make it easier.
7. Sitting at work, people had to move drinks and stuff next to me, making quite some clonking noise and needing to talk. Wdntve been a problem in days gone by, but it was very much irritating me, I was thinking of going away, but didn’t, thought it wdnt be long…
8. Lost my key. Not too bad, as it cd only be at work. But seeing as I’d lost 3-4 things in the last few weeks, including one of my mobiles and my pda, it did make me a bit anxiiouds. Found it again after 5 minutes in a door I’d been in.
9. A nice colleague wanted to socialize a bit, took about 20 mins, that was too long for me.
10. Off to the train: Cdnt lock my bike in as I’d lost my key again. I was pretty sure at work, but…
11. So missed that train.
12. Back to work. Getting more and more strained now.
13. On the way there I met a nice ex-colleague, who wanted to socialize ‘only short’, which I had to this time, as last time I’d said: Sorry, no time, I’m in a rush.
14. Time was running short for the next train…,
15. so I ‘had to go’ -
16. first back to work again, so ‘wrong direction’, but not far
17. it wasn’t where I thought it was. But someone had found it.
18. Back to the next train - in time tho. My son called again that both ‘his’ women were claiming they felt snubbed, altho he was trying to harmonize everything - I tried to clarify that as things are he won’t ever be able to harmonize everything, he needs to ask for opinions but then decide himself and take responsibility himself and it won’t be easy or harmonic all the time, it’s better than most as it is. Thankfully he’d called it off for today because the mother of his girlfriend needed him to help wallpapering (I didn’t understand why he hadn’t realized that that was going to happen anyway…).
19. On the way home from the train I realized the back wheel of my bike was probably irreparably damaged. I’d been planning on getting it repaired this evening. Now I cd luckily make it home at least.
20. At home I went to my wife hoping she’d need a break after work. Her greeting however was: Was that chocolate in the toilet this morning or what…? I said sorry, I’m really doing my best to remember to do everything, but I just sometimes forget.
21. Told her the story of my day and the problems of my son and she apologized and said: and now I’m bashing you. I grinned and said - my first thought was that I’d only got one woman, not like my son…
22. I was hoping we could keep it short as I knew she needed a break, and I needed one too, and she asked and talked and I cdnt sit anymore and after far over an hour we both realized we were waiting for the other to stop.
23. While talking I did a bit of fibro work, tried to add research to “Alpha Stim” as treatment, and got the error message that I’d written too much, which means I have to restructure my reference work once again…
    
    
24. So off I went to get my newly repaired first bike, hoping to leave the second one there and get the back wheel replaced. The bike was really beautifully done up, which is great for people who want their bikes to look good. I didn’t tho, I need to be able to let it stand half a day at a train station without it being nicked or damaged, so it’s sposed not to look good. The guy - a neighbour who I’d not known and tried for the first time - wanted me to be happy, so I played being happy, and he was so pleased. And actually I just thought: damnit, now I’ve got to use one of my bad bikes for the train station.
25. Then he saw the second (ex-good) bike and said: ‘No chance’. So all remnants of hope destroyed.
26. So I had to take it home again and started thinking about how to get rid of it, my ex-2nd best bike.
27. But first I also had to take the remnants of an old pretty broken bike with quite a few really good expensive parts on it I’d given him. A big plastic bag, very heavy, including two rims. I cycled the few minutes home but that was very strainful.
28. On the way back to him I was lost in thought looking down at the newly painted bike and almost mowed over three people as I was driving slowly on the sidewalk/pavement. They were nice about it, but I was still consternated that this had happened.
29. Coming home I realized I’d lost another set of keys, so the 3rd time today. Thinking where, at work or where. Found it again after 5 minutes.
30. I sat eating and said: Strange, I haven’t done much today, but I have no capacities for anything, don’t want to see anyone or do anything big anymore. This fibro is not just about ‘doing things’ and it’s not just physical, it’s also mental.
    Then suddenly I contradicted that and said I wanted to go to the grocer’s now as I had planned that. And my wife said: Not in the state you’re in. I said: What’s up? I’m calm, everything’s OK. She replied: Maybe, but you are emanating 1000 volts and are dead. Leave it be, I can do it tomorrow. Phew. Good on her.
    So that’s the stories behind doing nothing. When I now read it, I can believe that I am shattered, and can’t quite understand why I didn’t realize it before writing it all down
    #30? IT’S HOT! (Which on it’s own may be fairly OK, altho not my favourite weather and does strain, but … )

Activity-details: music 20', live work 3h30, cycling 1h

Music 21:45-22:00 15’, 7:25: 5’ = 20’
Cycling (expected) 8+8+8+8+8+8+5+5=h58
TT 0, mate didn’t have time
Grandchild 0

Treatment: 1h05 (self) fw: 2h30

Effects of 750mg GABA (1 capsule), 3x290mg passiflora: up often, energy, but lots of tiny tuff stuff

Night good, despite being up often. Watch for pee-pain, energy, stiffness today in comparison to yesterday due to 350mg less GABA. Actually energy etc. today, just so much tuff stuff happened. Pain before peeing a bit at midday again.

Effects of acupressure: loins good, but still with some pain

Loins’ll still be good, watch out for less/no pain on right when holding foot up; 8:45 still the same as it was. Front of left thigh only a few hours, Traumeel & workout helped.

Physio-type self-treatments: 1h05, fibro-work 2h30

yoga 2’, Timing, thumbnail 10x30’’, AuTr 15’, hunchback-hard-cushion 10’, cold shower (10’), palpate 2’, belly 4’, back 7’, workout 8’, neck 1+ 2’, gums 2x30’’, = 66’…
neck 2 ', loins ', marionette-hang ', breath-hold ', shaking dance ', RR x
Fibro-work: +20’ evening Night: 5’ 7:20: 3’ 7:41: 19’ 8:35: 10’ Researching Alpha Stim ?20’ and Updating this: ?1h10 = 2h30

Therapy’s further fruits:

• Both psychotherapist and physiotherapist agree that considering the amount of self-control and self-care I practice that I shdnt be worried about being up longer at night for fw if that allows me to feel ‘free’. Also I threw into the ring that the length & frequency of the breaks doesn’t make that much difference to how restorative my sleep is, how well I feel the next day etc. My wonky sleep is a factor which’d be nice to improve but praps something I just I have to live with, considering that pacing is much more important.
• At the moment I have the feeling I’m stabilizing my “90%/1”, be it at a low level of work (20%), and can slowly look from there if anything - like work - can be increased a bit. Just have to remember that I’d prefer to do everything I do a little bit more every week - actually apart from work, unless I had more hours a day, or someday my need to do fibro-work decreases… If I did more work now, everything else wd get less (apart from fibro-work, as I often do that when I have no energy for anything else, just slopping around on the couch)…
• I spent much of my life up to fibro helping others, privately and in my job/-s. My parents did not role model really helping others much, or maybe they were an anti role model, set a bad example of how to do it, looking at formalities, but not really going into true relationships (incl. with us) and centring around a sort of vague self - maybe that spawned my desire to “do it properly” and combined with reduced self-care and missing so much myself became the perfect deadly mix. Anyone else?!

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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.

[JayCS]

2021-06-17, Thursday

Sleep: 8h12, up 6x (23’)+20’ Feeling 90% well, pain 1 of 7

- just that 6:20 is a great time for sleeping for me, and not for going to work…

Sleep details: Bed late, cos of writing down the 30 annoyances. Writing exact times down helped again tho. Cold showering was again most effective: more often?

Passiflora 21:25, GABA 21:25
Later than planned (6:20 coming up!!) due to having to write all the day down to get it out of my system…
21:40- cold washing arms & adding a further stressor to ‘Wednesday’
so 21:45-
23:07: 3’ dry mouth → drink, gel, lips; pee, thumb. fw:1’
23:44 6’ LBU: shake-dance, hang from bar. cold wash arms & lower backfw:2’ drink. / Dozing, i: son’s problems (how many people are on his new girlfriend’s side (2+), how many are on his side (2), how many are on his ex’s side? 0: not fair for her). AuTr 2’. Bending backwards, outwards. Lavender. FCS —>
0:30 fw 1’
0:37 8’ FCS
4:00 (!) 2’ pee
5:17 3’ pee, drink: No getting nervous now! Put a 2nd alarm mobile next to my bed. Was OK.
-6:20
Sum: 2h15+6h20-(3-6-1-8-2-3=)23’= 8h35-23’=8h12, up 6x (23’)
10:56-11:16 = +20

Activities: 4h05… 70%/3 after work , 90%/1 after acupressure & TT

My wife asked me yesterday to consider not going to son/grandchild today cos of the ‘30 annoyances’. We decided I try a cold shower & a power nap instead of a long sleep, but unlike last week my pain & tiredness is just as bad as before it. Now just resting (fw: writing this) & hope acupressure will take care of it. It did.

Activity-details: live work 1h, cycling 1h15, shop 20', TT 1h30

Work: 1h
Cycling 8+8+8+8+5+11+11+5+4+4+5=1h16
TT 6:4, 1h30, not easy, not hard, despite acupressure & less GABA (& hot!). Actually thought I wdnt manage 6 games. First game was easy, after that struggle, I don’t feel the conditions (heat, sun) were the problem.

Treatment: 3h05… (self 55’…, acupressure 2h10) , fibro-work 2h20

Effects of 750mg GABA, 3x290mg passiflora

Apart from the tiredness seems OK. Can’t find my roseroot capsules.

Effects of acupressure...

Loin pain decreased even more today. Next area above my left knee, working it manually was no that bad, but there was such a large area that she got her metal vibrating thingy out again which was pure anguish and left scratches on my skin again, let’s see if they “bleed” like last time.

Physio-type self-treatments: 54'

AuTr 5’, Timing, hunchback-hard-cushion 10’, cold shower 2x(10’), neck 1+ 2’, palpate 1’, belly 3’, back 7’, shaking dance 2’, gums 2x30’’, thumbnail 6x30’’, = 54’…
V, twist-stretch, workout 7’, neck 2 1’, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, RR x2’
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

Fibro-work: Night: 5’ 11:20: 1h02 17h25: 33’ 18:20: 20’ 18:40: 20’ = 2h20

GI: In my salad at work there were no tomatoes this week, but fairly mild radishes, I ate half of one and explained after… Let’s see if I can stay under 8h of pain this week… 19:00 still nothing to speak of.

Managing 30 annoyances (0 today!) - sophisticated pacing: 9 habits (to re)new

Insist on my son improving his speech quality during phone calls.
Zero tolerance for noise etc.: Say so or go.
Keep hand on keys / Stop leaving them in doors ‘to save time’.
Only use one set of keys at a time, put the other 2 straight back in my bag.
Keep socializing down sooner by asking what the person is about to do next.
Get all my bikes improved soon.
Pace better by keeping an eye on the amount of annoyances I’ve already been thru.
Put an alarm to check the toilet before I leave the house.
Transport heavy stuff better & under 5’, less on bad days.
No annoyances today, just the getting up early and napping 30’ not being good.

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[Freedom]

Hi JayCS, parents as role models? Mmmmmmmm. I know very few parents who are role models to their children. I was unable to have children but I do have nephews and great nieces and nephews. My role models were on the TV show, The Brady Bunch. I would watch episode after episode well into adulthood so that I knew, as best as possible, how to be a good parent/ person. I think it really helped me to become who I am today. The Brady parents were not perfect. I liked that about the show. From what I know about you JayCS, you are kind, caring, giving, strong and compassionate. You care about your fibromyalgia family here. I feel it every time I go onto this site. We care a lot about you too. If you need some support or someone to hear you and listen to you, we are here for YOU too. For not having parents as good role models, you turned out to be a pretty awesome guy! It’s ok to let us help you too sometimes. You deserve to be helped and not always be the one helping others. I hope that makes sense.

[JayCS]

2021-06-18, Friday - additional GABA un-stiffed me, but sitting is yucky

Sleep: 10h22, up 6x (1h) Feeling 90% well, pain 1 of 7

Ideal up to now, if I can repeat that: 1h is OK, I managed to curb it. Realizing I was wide awake I tried adding further GABA, a lot, which seemed to have help the sleep. Now I’ll have to see what it does with me all day.

Sleep details

3x290mg Passiflora 20:30, 750mg GABA 21:15, FCS 21:20
21:30-
23:54-57 3’ pee/pain 4, thumb, drink,
1:44-40 5’ pee/pain 4, thumb, drink, dry mouth better tonight.
2:02-11 9’ FCS (30’’) pee/0pain, thumb,
3:40-4:16 36’ daft dream (not being able to find a train timetable at a station). 6. pee/0 pain. thumb. Hungry → drink. Feel like a longer sleep break, overactive brain needs sth. to do, maybe from the dream, altho I’ve stopped thinking of music by not listening to my track for 2 days. But I’ll try to force myself back.
4:42 3’ Doesn’t work, despite AuTr, I feel pretty wide awake while lying down - however nice drowsily tired upon waking up. I didn’t feel like cold showering again, cos I’d already done it twice and was getting a bit chilly. Try GABA +500mg, seeing as my theory that it was causing worse precision at TT and more pee pain doesn’t seem to be true, as I’ve had both yesterday again. So another test. (Next time I cd test a 3rd cold shower tho.)
5:53 4’ Suddenly razor-sharp sore throat - from lying a bit without blanket → Marigold essence. pee/0 pain, thumb, put on trousers, woolen socks, pulled duvet up a bit more.
-8:52 after deep sleep, a bit strangely dreamy, but OK. pee/0pain (very slow).
Interesting
Sum: 2h30+8h52-(3+5+9+36+3+4=)60’= 11h22-1h=10h22, up 6x (1h)

Activities: 5h30 Feeling 90% well, overall pain 1 of 7 despite yesterday; however backside pain: 3.

Activity-details: live work 2h, cycling 1h30, grandchild 2h

Cycling (expected) 8+8+8+8+30+30=1h32
grandchild 2h
(TT 0)

Treatments: 1h05 (self): on the increase; GABA good, loins so-so (fw: 55’)

Effects of 750+!!!500mg GABA, 3x290mg passiflora: good

Taking more helped get back to sleep properly. Caused more un-stiffness getting up from everything. Can’t say my muscle tone is that relaxed, altho on a certain level I am. My face muscles still need extra relaxing tho. As we went to my grandchild, I cdnt test myself at TT, but actually I’m starting to think that maybe it doesn’t matter too much, as I don’t have to do much tough stuff at work which I’d compared the TT-precision to.

Effects of acupressure - on loins: so-so.

In the evening my lower back was getting on my nerves. The skin has partly recovered. It was good at night, but sitting at work and then at home was hard, so I prefer leaning against my couch, legs to one side.

Physio-type self-treatments: 66': more stretching is new, fibro-work 1h05

AuTr 5’, Timing, cold shower 2x(10’), neck 1+ 2’, palpate 1’, belly 3’, back 7’, V 1’, twist-stretch 20’, gums 3x30’’, thumbnail 10x30’’, = 66’…
hunchback-hard-cushion ‘, workout 7’, neck 2 1’, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’
Fibro-work: Night: 10’ 9:50: 20’ 15:00: 15’ 15:25 10’ 19:10: 10’ = 1h05…

Development:
I need to analyze my sitting more using a sitting diary. Acupressure may help, but yesterday it was sposed to do something for my lower back, which was actually OK at night. But at work I’ve started putting a soft cushion on a hard bench I sometimes sit on, which however didn’t improve it at all, actually may have even worsened it, as I can’t remember having come home of late with it this bad.
We cycled to my grandchild 30’ there, 30’ back (together, so slowly due to the heat, my wife is having more problems with it than me). Despite it supposedly being my best bike, I noted pain in hands (2), backside (4) and feet (2-3). The latter was to me. Backside’d be the sitting and/or lower back problem so all cycling times’d belong in the “sitting diary”. It might also be a question of changing my saddle, even if the one that’s one it is expensive: That doesn’t make it good for me.
At my grandchild’s I made sure I didn’t sit, but lay down as much as I cd - kneeling or crouching wasn’t a good alternative…

My blog-summary

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

2021-06-19, Saturday

Sleep: 10h10, up 5x (1h05) Feeling 90% well, pain 1 of 7 (750+0mg GABA)

Sleep details

20:45 Passiflora, 21:00 GABA
21:18-
23:22: 9’ pee/pain 0. thumb. drink. fw 6’
23:47 9’ pee/pain 0, thumb, drink, too hot: 1’-cold shower. Dozing - AuTr 5’
0:24 40’ Cold didn’t help: 6 did. Try to curb more.
3:41 3’ pee/pain 0, thumb, drink, body lotion on itchy right shin
6:50 3’ pee/pain 0, thumb, hungry & dry mouth → drink
-8:33
Next up: GABA? (+750mg??) Not nec.
Sum: 2h42+8h33-(9+9+40+3+3=)64’= 11h15-1h05=10h10, up 5x (1h05)
Wdntve thought I cd gt that far and wake up with eyes that closed without more GABA. The heat?
I’m wondering whether I can get using the 3 things that help sleep more into a routine or whether I have to get a feeling for which one is best.

Activities: 3h Feeling 90% well, pain 1 of 7

Table tennis (TT) (and ‘development’):

Like other days of late my muscle control started bad today, for 3 games, after that it was good for 2 games, then off and on, so altogether 3 games and 2 1/2 games bad, and “half” a game was enough to lose, so that made losing 5 games.
I’m taking it easier now. I have been watching it for many months now as a measure for how well & able-bodied I am, esp. regarding work. However I’m now seeing that lack of muscle control isn’t that important for my other activities. It is important for cycling in traffic, leg co-ordination on steps etc., but those are more leg things, and in table tennis it’s the arms which are less controlled (but sometimes legs, sometimes all of me, all co-ordination suddenly breaks down for a short time).
(Development:) Now I’ve toned work down to 20% that’s stopping me from overdoing it there, and so I don’t have to watch TT as closely. And at the same time as working less I’m managing to play more (last year I cd only play 4 or 6 games with lots of 3’ breaks and my mate had to pick up the ball all of the time). My life is in more of a balance, stabilizing. OTOH I can’t always manage 2h of grandchild a week or 2h of music production/singing every week. It’s not a question of reducing table tennis as I feel I need it to ‘survive’, for my body, mind and soul, for fresh air and laughter, and leaving it wd not allow me to increase work, grandchild or music anyway. That’s easy to see now, as due to work we never play in the mornings any more, except sometimes at the weekends. So it’s not the case that TT makes it harder for me to do anything else.

Taking it easier at TT means I do sometimes try to put a little bit of energy and strain into it, but neither let my muscles nor my inner stance get taut again which can lead to Ache and needing to rest afterwards, which then isn’t the case any more, whether we play 8 or 10 games.
I expect to lose and can then observe my playing better when I do get points.
For the time being I’ll be counting the games where I have reduced muscle control.
Today it seemed to be happening more when hitting the ball hard, but it also makes it hard for me to use spins.
It tilts the games in one direction/trend for a time. This usually happens with lack of concentration (energy, thoughts) and can be changed by pulling yourself together. Since using more GABA I seem no longer to be able to pull myself together, “it” comes and goes and its own will, no longer at my will.

Activity-details: cycling 1h06, TT 1h10 3:5, shops 40'

Cycling 3+3+5+5+5+5+20+20=1h06…
TT 0:3 → 2:3 → 2:4 → 3:4 → 3:5, 1h10
shops 2x20’

Sitting

Sitting-details: legs stretched out & changing positions spreads the pressure

11:10: “First pain of the day” after 5’ of sitting on a kind of modern armchair. half-sitting on floor, legs to the side, leaning on my couch
11:50 Sitting on the floor without a pillow, both legs stretched to the front, leant against the couch hurts my coccyx a bit, but not my buttocks.
12:00 This sitting leaning against the couch allows quick changes in position. Now realizing the coccyx is hurting I’ve put my right foot under my left stretched out leg, so now only my right buttock is getting pressure. 12:05 Left foot under right. 12:10 Legs straight.
For eating I realized normal sitting is quickly very painful, inside of 5’, so I adapted the sitting on the floor, by putting my legs up to the chair next to me and regularly changing positions that way, which helped quite a bit. Then it helped to do a shake-dance after, and to hold myself up just with my arms and let my spine hang freely.
14:48 Put my laptop on my couch, leaning on there, legs to one side.
Bike saddle , altho leather, best when spreading the pressure.
Park bench outside
Deck chair on the balcony - only give if I twist & squirm.

Treatments: 55’ (self) (fw 3h40…)

Effects of !750mg GABA, 3x290mg passiflora: Good sleep/stiffness/energy, so-so TT & pee pain

I was surprised how well sleep went. Pee pain 0, except ~15:00 3 and 20:00 2.

Effects of acupressure: Loins & back good, sitting next to do

Loins great all day, pain 0. Lower back was good tonight. … Sitting is the next big one.

Physio-type self-treatments: 54', fibro-work 3h40...'

AuTr 10’, Timing, hunchback-hard-cushion 5’, cold shower 1x(10’), palpate 1’, belly 3’, back 7’, workout 5’, gums 2x30’’, thumbnail 10x30’’, V 2’, twist-stretch 5’, = 54’…
neck 1+ ‘, neck 2 1’, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’
Fibro-work: 19:30: 25’, Night: 5x1’=5’ 11:10-12:52: 1h32 14:20: 20’ 15:30-16:20: 50’ +~30’ = 3h40

Development: See TT and sitting.

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

2021-06-20, Sunday

Sleep: 10h38, up 7x (1h07) Feeling 90% well, pain 1 of 7

Sleep details: good, but dozing cos of thunder and +750 GABA too much(?)

Passiflora 20:45, pee pain 2 (p/2), GABA 21:40,
21:45- hot (28°C/80°F).
22:38 10’ FCS
0:22 6’ p/0, thumb, drink,
1:50 39’ p/2, thumb, drink, 6, pee/pain 0, thumb,
3:13 1’ closed window cos of thunder, dozing, woken/started/heart thumps from 2 of the claps, despite ear plugs.
4:09 5’ p/p 3. thumb, drink. +750mg GABA.
6:05 3’ p/p 2. thumb, drink. throat feels full - GABA-ic.
7:19 5’ belly feels full now too - GABA - drink.
-8:35
Sum: 2h15+8h35-(10+7+39+1+3+2+5=)67’= 11h45-1h07=10h38, up 7x (1h07)

Activities: 2h05 Feeling 90% well, pain 1 of 7 70%/3 after TT.

Activity-details: TT 4:4 1h20 (tough), housework 30', cycling 16'

housework 30’ (usually often shorter stints, not worth writing down)
11:10 p/0
Cycling 3+3+5+5=16’
TT 4(+1):4 (wind, started easy, got tough, needed 2 breaks, precision surprisingly OK; easy playing against someone untrained for one last game)
p/0-2 later on.

Sitting

Sitting-details: mattress good

Sitting on my straw mattress for quite a while did not hurt.
Wondering whether when I sit on the floor, my coccyx pain is more direct and makes me change position faster, whilst sitting on a soft cushion isn’t/doesn’t.

Treatments: 50’ (self) (fw 6h40, mainly blog & research)

Effects of 750+750mg GABA, 3x290mg passiflora

Cos of being awake from thunder I took another 750mg. Not good for GI tho, despite it being in a capsule. Throat & belly seemed full upon waking up, 13:00 throat seems “full” again.
TT was surprisingly precise, esp. in the 1st game, so got unsure about whether more GABA isn’t good.

Capsules: filling machine not nec. (yet); start with ordering 500mg capsules as well

The capsules in my productare from HPMC, sort of cellulose, i.e. vegan and "not non-"organic. They are not enteric coated (so not fully resistant to gastric juice, which needs a polymer coating), but this seems to be good enough for 1x750mg plus a bit more. I cd get a manual capsule filling “machine” (contradiction in terms), 13€-30€, but I don’t yet know how much I will need it. Watching vids on youtube how to do it I can’t see how I can change the dose easily. So I’d say I just need a few 100 capsules for starters. Or easier I cd get some 500mg GABA-capsules, so I am more flexible. GABA capsules aren’t that expensive anyway. Wdnt be as fiddly.

Effects of acupressure: Loins & back still great.

Loins still great.

Physio-type self-treatments: 48', fibro-work 6h40, not even managing ordering supps or references

AuTr 5’, Timing, hunchback-hard-cushion 10’, cold shower 1x(10’), palpate 1’, belly 3’, back 7’, gums 2x30’’, thumbnail 8x30’’, V 2’, twist-stretch 5’, = 48’…
neck 1+ ‘, workout 7’, neck 2 1’, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’
Fibro-work: Night: 8’, 8:35-9:30 12:50-1h-19:27 = 6h40 OK? Hmm. Didn’t really do what I didn’t want to, it just took so long…

GI: Pain in right belly for a few hours: the high dose of GABA or the small amounts of chickpeas I’ve been eating since 24 hours, which similarly to beans might cause problems - only beans don’t…

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

Highlights and lowlights of the week - June 13th to 19th

1. Self-assessment: I’m stabilizing at my low level of 90%/1. Maybe a springboard or at least stepping stone to more. Or just happiness But if my wife sees that as 50%/3 tho, I shd maybe improve it to really 90%/1 before loading it up further. My sleep/rehab doc and my acupressurist both think I shdn’t/don’t need to treat myself with that much care, tho. So something for therapy. What is your impression of my self-assessment?!? - Am I kidding myself? Is she catastrophizing? Shd I discuss it with her differently?
2. GABA is still working well at daytime, incl. energy, quite a bit at night too but I’m still needing to adjust the dose, as analyzing my TT muscle control (precision) isn’t quite as easy as it first looked
3. 750mg capsules didn’t make my stomach burn , but 2x increased IBSD problems whilst the half radish on Wednesday didn’t.
4. Trudy Scott’s blog is much more in depth and relevant for me , the book is for the basics.
5. About time I ordered new stuff from the Apotheken. Working on improving my priorities…
6. Sleep: The big pillow is generally better for my neck pain , but not always.
7. No unrest (LBU) since leaving L-dopa and carrying on the loin-acupressure. or rather increasing it with more twist-stretching and V-stretching as self-treatment
8. My few blood pressure checks were good, but my focus is elsewhere at the mo. Seems better at night.
9. “6:20” was OK-ish again, at least after acupressure. Not followed by a string of bad nights.
10. Curbing my fibro-work, esp. at night, is better now.
11. Maybe I shd put fw aside a bit, then start finishing the database and only do a bit of forum work.
12. Gums better, it seems to have been the filling opposite once again.
13. Sitting is a big one for pain I often suppress/ignore. Chairs & benches are a big problem , couch, floor & mattress are OK-ish.
14. Therapy “reminded me to remember” not to repeat my parents’ lack of self-care. …
15. Analyzing Wednesday showed how a whole load of stressors can add up, or rather: build up, by the end of a day: 31 on the days after something like 5 at most… I’d never’ve thought this. Working full time I realized after about 5 years that when I’m stressed there is one thing, like someone at work, which had caused it, often only a short time. Both shows it’s good to take small things seriously in a certain sense, i.e. actively confront it and tone pressure or anxiety down, stop doing as much as I can and relax again.

Any ideas?

[JayCS]

2021-06-21, Monday

Sleep: 9h55, up 4x (50’) Feeling 90% well, pain 1 of 7

Sleep details: Beating the minute hand is a good trick

!exact times, incl.: beat the minute hand if I’m on the laptop
Passiflora 20:30, GABA 750mg 21:15, 2x thumb,
21:30-
23:29 12’ p/2, thumb, drink, FCS
1:37 6’ p/2, thumb, drink
3:45 3’ p/2, thumb, drink.
5:17 28’ p/1, liver → Gastritol, drink, 6, p/0.
-8:15 p/1.
Sum: 2h30+8h15-(12+6+3+28=)49’= 10h45-49’=9h55, up 4x (50’)
Sleep: Was it Mg that decreased my breaks when I started with GABA? (Or glutamine…?)
Bladder: Movement’d help, but I want to see if GABA can get the muscle tone down by itself, without me using tricks.

Activities: After having to talk loudly thru the mask at work Feeling 70% well, pain (= Ache) 3 of 7 for a few hours

Strange feeling, hard to describe. Needed to breathe deeply (but even that doesn’t really help much) and rest several hours, but was still able to do a few things. I thought it might have got better. Under an hour is OK now, but over an hour is just the same as it was in Nov/Dec. So it means that I have to make sure to avoid that as much as I can…

Continued doing the song I’m at in the evening. Then To stop me from getting an earworm I and then we put favourite songs from the 80s & early 90s on, which made bedtime a bit late… Hope it works tho.

Socializing around 17:00, i.e. phoning a few people for a time, wasn’t too bad.

Activity-details: live work 2h, cycling 32'

Cycling (expected) 8+8+8+8=32’
TT 0 (too much drizzle)

Sitting

One chair at work was quite OK. In a break I sat with legs stretched out on the floor, leant against a wall - didn’t care what anyone might’ve thought - one colleague said: Yeah, we’re all a bit drowsy today cause of the weather…

Treatments: 50’ (self) (fw about 1h15+)

Effects of 750mg GABA, 3x290mg passiflora

Night OK, energy & stiffness OK, no chance to try TT. Pee pain not there. No GI problems…

Effects of acupressure: loins still good

Loins still almost without pain.

Physio-type self-treatments: 50', fibro-work 1h15?

palpate 10’, AuTr 5’, Timing, cold shower 1x(10’), belly 3’, back 8’, workout 8’, V 2’, thumbnail 10x30’’, = 51’…
hunchback-hard-cushion ‘, neck 1+ ‘, twist-stretch ‘, neck 2 1’, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, gums x30’’, RR x2’
Fibro-work: Night: 5’, 5+ 5+ 1h? = 1h15

GI: Palpated the pain (liver? right hand side) away 21:00. But needed Gastritol at night. Still not gone. “Feels” like GABA, not the chickpeas or a few things that may have been a bit off… So I’ve repeated all these today, except the high dose of GABA. Playing my own guinea pig again. 21:45: No GI problems yet.

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

2021-06-22, Tuesday

Sleep: 9h05, up 7x (1h51) Feeling 90% well, pain 1 of 7 (making music…)

Sleep details

!exact times
Passiflora 21:25, GABA 21:25
22:00-
23:12 5’ th.
23:57 12’ p1 th. - and my song (In Christ Alone) is back again, the anti-earworms have no chance, have faded. p0. th.
1:27 18’ p1. th. song. p0. th.
2:12 9’ FCS. & Maybe I have to push the rivalling hooks more.
3:30-4:30 1h music. 6.
5:23 3’ p1 th. hunger: drink. liver a bit - so not 750±GABA but the chickpeas??
6:13 3’ p1 - frequency high tonight?
-8:55
Sum: 2h+8h55-(6+12+18+9+1h+3+3=)1h51= 10h55-1h51=9h05, up 7x (1h51)

Activities: 5h10 Feeling 90/80% well, pain 1 of 7

While making music: tried/try to stay/get relaxed, do AuTr in between, esp. in the music lesson when my teacher is listening to my song.

Activity-details: music 3h30+, cycling h30, TT 6:2, 1h10

Cycling (expected) 10+10+5+5=30
TT 6:2 relaxed, not easy, but effective enough…

Sitting

OK on my slightly padded bar stool quite a lot of the day (sitting often only one-sided)
Trying to it differently more: legs straight and up, seems to help.
Acupressure targeted my backside pretty effectively.

Treatments: 3h05 (self 34’, acupressure 2h30!!) (fw 3h05+ incl. ordering supps & capsules)

Effects of 750mg GABA, 3x290mg passiflora: Good, apart from p-frequency

p-freq high, but p0 almost all the time.

Effects of acupressure: Backside!: Great! O.o

Loins still good. Due to sitting problems: backside with pressure points & the vibrating metal wheel gadget, hurt again, great after, moving, cycing extremely fast, standing straight, still good at 21:15. Felt churned thru, but also relaxed and “soapy”.

Physio-type self-treatments: 34', fibro-work 3h05

AuTr 5’, cold shower (10’), palpate 1’, belly 3’, back 7’, thumbnail 14x30’’, gums 2x30’’, = 34’…
Timing, hunchback-hard-cushion ‘, neck 1+ ‘, workout 7’, V ‘, twist-stretch ‘, neck 2 1’, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’
Fibro-work: Night: 5’ 17:15: incl. meds: 3h = 3h05…

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

2021-06-23, Wednesday

Sleep: 9h35, up 4x (25’) Feeling 90% well, pain 1 of 7

Sleep details: "Successful" - but fatigued, no lust 4 work, tired at 13:00

!exact times
Passiflora 21:20, GABA 21:20. Bit of pain then, cos of needing to go to bed due to only 9h on Tuesday.
21:45-
00:15 15’ fw 12’ p1 thumbs drink
2:32 5’ 5 insect bites and my song aren’t getting on my nerves too much. For the song I am using another earworm and also I am ‘hearing’ it, but not wanting to work on it too desperately. I have left the insect bites completely alone, not even using my tiny “electrocutor” gadget. p 0, th drink. fw 3’
5:47 3’ p0 thumbs drink
7:15 5’ p0 thumbs drink. Cold feet & clotted right nostril: A 4th pair of socks nec…
-7:45 Best up now, since tomorrow is 6:20 again.
Sum: 2h15+7h45-(15+5+3+5=)26’= 10h-26’= 9h35, up 4x (25’)

Pity I have to get up at 6:20 tomorrow, I desperately need a really long lie in…
13:40: taking off hoodie, just T-shirt (inside), cold washing arms helped a bit.

Activities: 6h Feeling 80% well, pain 1 of 7 … : tired/fatigued: Not enough sleep - but sleepily relaxed & thus precise TT playing…

Activity-details: live work "4h" (1h30), cycling 50'?, TT 5:1, totally relaxed

At work from 11:00 to 15:00, but real work is probably only 30’, but I am ‘doing stuff’, can’t really relax anywhere.
Why am I so tired today? Weather is moderate, I’d been at 10h sleep at the weekend, was under 10h for 2 days now. 17:00 still not well, trying a bit of table tennis, but my eyes don’t want to open properly.
Bit of stress getting to the trains to and from work, shdve started off earlier, but when you’re tired you don’t get that sort of stuff sorted out as well, do ya…
Cycling (expected) 8+8+8+8+5+5=h42’
TT 5:1 despite or even because of being tired and totally relaxed, sleeping really, eyes half closed. Stopped at 6 games just in case I was overdoing it, but doesn’t feel like it after. Even the first game I was leading 18:12 and then it suddenly went askew, so I thought that was it - wasn’t tho… Used absolute no more energy than if I’d been at home on the couch… Makes me mate flinch , when I say that ;-D, but I can’t help it
After hungry, ate early, after eating I felt … awake … but now I shd be getting tired and going to bed early… I’ll still do that tho. 20:30: How did I ever think I wdnt be tired enough…
OK, doubly made sure I’m tired. Haven’t listened to “my song” yesterday or today, now GABA, let’s see…

Sitting

Still dreadful, sore, tormenting, harrowing, distressing…
13:50 I’ve taken 2 chairs, one with cushion, shoes off, legs sometimes up, let’s see if that works. Fairly OK, but alternately problems with all parts of my left leg, see acupressure. A slightly padded chair was OK too. The office chair is strange, not good at all, with or without a cushion.

Treatments: 42’… (self) (fw 2h…)

Effects of 750mg GABA, !2!x290mg passiflora

Went down to 2x290mg as I can’t see a difference caused by that at the moment: And it was a good night despite that.
Ordered a lot of other things at last: empty capsules, GABA powder, magnesium oil, tea trea oil, special toothpaste, and prepared the next orders.

Effects of acupressure: backside comfy & no more irritation first; sitting still dreadful

Need to do twist-stretches fairly often trying to sit as normal. My left leg is giving new problems top to bottom: foot, calf, knee, thigh, hip alternately… Probably a side effect of the acupressure.

Physio-type self-treatments: 46'..., fibro-work 2h...

AuTr 1’, Timing, cold shower 1x(10’), palpate 1’, belly 3’, back 7’, neck 1+ 5’, twist-stretch 7’, marionette-hang 2’, shaking dance 1’, thumbnails 16x30’’, gums 2x30’’, = 46’…
hunchback-hard-cushion ‘, workout 7’, V ‘, neck 2 1’, yoga ‘, loins 1’, breath-hold 11’, RR x2’
The 8mm cleft in my left thumbnail is looking pretty good, it seems it will grow out, but I’m also hoping the cleft will join pretty well by the time that starts to happen (another 2 weeks or so). Comparing thumbnails today I saw that the right one has 4-5 dents in it again, so I’m putting the urea cream on both as from now.
Shdve used breath-holding and “better breath” nose strips yesterday at/after work - as soon as I know it might be over an hour of loud talking.
Fibro-work: Night: 10’ 8:00-9:23 1h23 10:00: 15’ 13:10: 12’ = 2h…

GI - ah, Wednesday once again, salad at work. No tomatoes, no radishes today. Everything looked good - but quite a bit of a movement 1h30 later, unsure why, but I think I pulled my belt too tight. Ooh, I always forget to tell people about that one - always have to make sure my trousers are slightly slagging, esp. when sitting.

Abbreviations & explanations

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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

2021-06-24, Thursday

Sleep: 8h58, up 4x (12’) +42’ nap = 9h40 Feeling 90% well, pain 1 of 7

Tired, but I worked like I played TT, half asleep…!

Repeat: Did you get that Up tonight for 12 minutes. TWELVE MINUTES Not per hour, per night Hard to believe

Sleep details: Ideally short sleep breaks! If I'd've cold showered at 4 to improve the sleep quality after, I'd've increased the time awake. Still might've been worth it... Only dozed/AuTr in the nap, after it workout good energy-wise, but feverish, i.e. still knackered, dunno what to do now, cold shower?

Passiflora 20:30, GABA 21:08, p2
21:10- (hunchback pillow 10’)
22:21 3’ unrest in middle back. p4! (after 6!), drink, shake 2’, earworm there, but comforting, not disturbing
1:25 5’ p3, teeth, drink, shake,
4:34 3’ p2, drink, polycotton top on (cdnt find a cotton one quick enough)
5:07 1’ hungry → drink, → too hot/sweaty once again → top off again → 4th pair of socks, more dozing & AuTr now, like always Thursdays in the last hours.
-6:20 Tired & feverish, but what the heck - if I can excel in TT in half-sleep, why not at work…
Sum: 2h50+6h20-(3+5+3+1=)12’= 9h10-12’=8h58, up 4x (12’!)
nap 10:00-10:42

Activities: 3h17… Feeling 80% well, pain 1 of 7 despite tiredness

BTW: How I’m “feeling” is only on a physical level. Basically I’ve been a happy, content guy the last 5 years and counting, so inside I feel 95-100% well most of the time. Whatever the discussion with my wife and others - no one can take that from me. My main “problem” is a deep desire to do more, esp. more fw, more music, more sports, more housework, more time with my wife, but it’s always been like that and shows my continued positive outlook on life, wanting more of it, not less…

Activity-details: live work 1h15, cycling h32, TT 4:4 1h30 (talk breaks, not nec, but welcome)

Cycling (expected) 8+8+8+8+5 =h37?
TT 4:4 1h30 not quite easy, but not struggling either.

Sitting

I often stand leant on to something - for years, actually.

I think I have to get some of my bikes “restructured” to make cycling a bit easier. I can’t repair or change them anymore myself, it’s just too much effort.

Treatments: 2h36 (1h06 self, 1h30 acupressure)

Effects of 750mg GABA, 2x290mg passiflora

Night was good… apart from p0-!4.

Effects of acupressure...

Left leg is still a bit of a problem. Loins still good

Physio-type self-treatments: 1h06, fibro-work 1h50...

Timing, hunchback-hard-cushion 10’, cold shower (10’), palpate 1’, belly 3’, back 6’, shaking dance 2’, thumbnail 10x30’’, gums 2x30’’, AuTr 10’, twist-stretch 6’, workout 7’, neck 1+ 4’, = 1h06…
V ‘, neck 2 1’, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, RR x2’
Fibro-work: Night/morning: 10’ 9:45: 10’ 10:50: 1h30 17:20-19:10 = 3h40…

Abbreviations & explanations

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. p0 means pain of 0.

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, p2: pain 2 of 7 before peeing, 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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

Oh dear, taken so long to get back, but you know I’ll always reply sometime
Well my parents were a great negative example…
Thanks so much for your kind words, heart-warming.
Yep, I do feel (and see from the amount of views) that lots are listening to me, which makes me not feel alone.
What I’m trying to get used to is asking more questions instead of babbling on and trying to answer my own questions. Talking to people I actually find asking questions a bit too pushy / obtrusive, and intend and hope that me being open will help other people be open too. But even there and even more writing with people, I’ve realized (and it’s thankfully been rubbed under my nose too ;-)) that asking questions opens me and others up to letting them/you help me more…
It’s quite hard for me, actually! And I know I have tried a few times (elsewhere) to no avail, but I think it was probably my fault, making it too big and complicated…

Thank you for helping me and showing the way with your question about our fibro-day…

[JayCS]

2021-06-25, Friday

Sleep: 8h10 !?, up 5x (38’) + 1h05 nap = 9h15 Feeling 80% well, pain 1 of 7

Sleep details: Enjoyed sleeping, but getting up in between was a bit 'burdened'. Pretty wide awake at 6:15!, I seem to have stayed in the rhythm of yesterday (for a change), can't manage to want to sleep: maybe I'm sleeping more effective at the moment?? Let's see how it goes... Don't trust this...

!exact times
Passiflora 20:30, moved 6 up to 21:00 instead of at night (is that the secret to more effective sleep?), GABA 21:15
21:30-
23:29- 13’ fw: 9’ p0 th shake 1’ stretch 1’ drink
0:05 6’ p0 th i/work: 3’ drink fw: 2’
0:17’ 7’ FCS p0 th
3:30 5’ p2 th drink fw: 1’ sore throat → Marigold essence
5:50 7’ p2 th drink Marigold fw: 1’
-6:18
Sum: 2h30+6h18-(13+6+7+5+7=)38’= 8h48-38’=8h10, up 5x (38’)+1h
16:40-17:45 slept fairly tightly.

Activities: 4h40 Feeling 80% → 60% well, pain 1, slowly up to 3 of 7, after TT: 4 Tired, but didn’t want to sleep till the afternoon, 20:30 pee-pain of 6 - Well if this ain’t a small flare…

Activity-details: live work 2h30, cycling 42', TT 3:3 1h30

Cycling 8+8+8+8+5+5=h42
TT 3:3 not easy, not hard, tired, very Achey, needed a break (actually more): What’s going on now, there’s a pattern I’m sure…

Sitting same , not worse

Treatments: h (self)

Effects of 750mg GABA, 2x290mg passiflora

Dunno

Effects of acupressure...

Dunno

Physio-type self-treatments: 1h20, fibro-work 2h40

AuTr 15’, Timing, hunchback-hard-cushion 20’, cold shower 1x(10’), neck 1+ 5’, palpate 1’, belly 3’, back 6’, twist-stretch 8’, yoga 1’, shaking dance 3’, gums 2x30’’, thumbnail 12x30’’, = 1h19…
neck 2 1’, workout 7’, V ‘, loins 1’, marionette-hang 1’, breath-hold 11’, RR x2’
Fibro-work: Night: 5’ 6:20-57: 37’ 7:00-8:55 +3 = 2h40…

Abbreviations & explanations

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, p2: pain 2 of 7 before peeing, 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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

2021-06-26, Saturday

Sleep: 7h05, up 6x (40’) Feeling 70% well, pain 2/3 of 7 - whassup?!?

Sleep details: Dead & Ache of 4 before, pains during, but then up wide awake at 5:35, pain at 1!?!

20:30 p6/7!
20:45 Passiflora & Mg (4x45), and feel better for it, was starting to get listless and depressed, 21:30 GABA
21:50-
22:16 5’ “tripped up and fell” while drowsing… Mg? Or due to my wife being narked & hangry cos of eating late, after I’d gone depressed and Achy, then also windy. p2. neck 4/5, fw2’
23:20 10’? neck 4/5 every time I start nodding off. Neither neck exercise nor big pillow helping. FCS, esp. 4x on my neck, p2 th drink fw2’
1:09 4’ unrest p0 th drink (neck OK after the FCS) shake dance 1’
2:38 4’ p2 th drink. FCS or GABA up next? fw1’
3:13 3’? p2 th hungry → drink 30’’-FCS fw1’
4:47 15’ hungry → ate (Mg?) & Gatritol, bowels slightly ISBD (Mg?) - Ehm, why am I taking the Mg malate if I’m not sleeping better and both stomach and gut are misbehaving? Was it like that last time or is just everything askew at the mo? fw7’
5:36 Small pillow now better than big one; pretty wide awake, not gonna fall for that one; left testicle aching, hurting pain 7 to touch what the f*** is up tonight?
But still: not nec feeling that bad, leaving the perforated/riddled sleep aside.
OK I have fallen for it and am now doing fibro-work instead of sleeping… - something with a purpose and to distract, at least…
-end
Sum: 2h10+5h35-(5+10+4+4+3+15=)41’= 7h45-41’=7h05, up 6x (40’)
‘Dis’order: Lying on back with hunchback cushion → soft palate makes noises after 5’, lying on side or front, my neck hurts after 3’, if I do neck exercises it was usually gone, tonight it hurts again after another 5’, also elbows, esp. when partly lying on my arms, and kness. Plus unrest in back generally, not necessarily lower back. Gums at first. Wind 1x/h all night.

Activities: 1h25 Feeling 80% well, pain 1 of 7 How come? When shall we 2 part? 20:40 still going good…

Activity-details: TT 6:2 1h10, dead easy!?! cycling 35', 20

Cycling 5+5+5+20=35’
TT 6:2 1h10 easy
Walk/Cycle to and walk in our Botanical Garden 20’ no problem, still wondering what’s going on.

Sitting + GI

At the hairdressers today I sat askew to be able to sit longer without pain, and she offered to cut it standing up, which was great for me. Just have to keep practicing to open my mush .
And with the smoothie I always get there I asked what was in it, and decided to risk banana, spinach and oat drink, which a bit of heartburn, like expected, but putting something to alleviate on now.

Treatments: 1h30 (self) (fw 10h!)

Effects of 750mg GABA, 4x45mg Mg malate, 2x290mg passiflora: hungry? Bad night, good day?

Hungry at 5:00 from the Mg?? And is the bad night and the good day due to the Mg / combo?

Effects of acupressure...

Hmm, dunno…

Physio-type self-treatments: 1h30, fibro-work 10h...

hunchback-hard-cushion 30’, cold shower 2x(10’), neck 1+ 5’, AuTr 10’, thumbnail 12x30’’, twist-stretch 5’, neck 2 1’, yoga 12’, marionette-hang 1’, = 90’…
Timing, palpate 1’, belly 3’, back 7’, workout 7’, V ‘, breath-hold 11’, loins 1’, shaking dance 1’, gums x30’’, RR x2’
Fibro-work: Night: 10’ 5:36-9:05 3h30 9:25-12:40: 3h15 +5’ +5’ 15:45-18:45-?30 +25 = 10h

Abbreviations & explanations

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, p2: pain 2 of 7 before peeing, 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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

2021-06-27, Sunday - fairly OK, interesting night

Sleep: =8h50, up 6x (1h55) Feeling 80% well, pain 1 of 7, ‘unrest 3’

Sleep details

!exact times
2xPassiflora & 4xMg 20:45 (hold on, praps I shdnt take all 4 at once, if it aint helping sleep anyway?), GABA 22:10
22:15-
22:45 30’ unrest trying to sleep on back and front, p1 th drink fw30’.
23:25 20’ FCS p1 th drink fw10’ Somehow still not really as tired as I usually am, hope the cold shower doesn’t backfire…
2:20 15’ p1 th drink fw1’ New lying on my front trick worked. Now tired. fw 12’
2:50 42’ Tried lying on my front trick again, but still unrest. hungry → drink fw5’ 6
5:14 5’ p0 th drink fw1’
6:33 3’ p0 th
-9:00 drowsy and slight headache → drink & RR, but I’ve definitely been well asleep.
Sum: 1h45+9h-(30+20+15+42+5+3=)1h55= 10h45-1h55=8h50, up 6x (1h55)

Activities: 1h50:left_right_arrow: Feeling 80% well, pain 1 of 7

Activity-details: TT 3:2 or 4:1, 1h, but pretty effortless; cycling 50'

Cycling 5+5+40 =50’ easy.
TT 3:2 or 4:1, 1h, but pretty easy

Treatments: 1h09… (self)

Been ordering a lot of supps the last few days, took about 2h altogether.

Effects of !650mg GABA (1st self-made), 2x45 Mg, 2x290mg passiflora

Sleep isn’t really getting better, but daytime energy, OTOH stomach problems from the Mg, so need to spread the dose more. Now I can spread the GABA too as I can fill my capsules like I want (smaller than the original and without stuffing probably quite a bit less, have to watch that).

Effects of acupressure: Unrest sitting & lying down is getting clearer

Lots to speak about and do.

Physio-type self-treatments: 1h10, fibro-work 5h05

* AuTr 5’, 2 hunchback-cushions 30’, cold shower 1x(10’), neck 1+ 3’, palpate 1’, belly 2’, back 7’, RR 3x2’ gums 2x30’’, thumbnail 8x30’’= 1h09…
Timing, workout 7’, V ‘, twist-stretch ‘, neck 2 1’, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, *
Fibro-work: Night: 22:45-23:15: 30’ 9:00-10:18-6: 1h12 10:20-11:05: 43’ +30? 12:55-13:20: 25’ 15:20-16:00: 40’ 18:20-19:20 1h (?) = 5h05…

Symptoms

Lying (esp. trying to sleep): Unrest if lying straight up or down.

Lying on my back I can stop the noise my soft palate makes by overstretching, i.e. bigger pillow under my hunchback. Lying on my front I can put 2 pillows under belly and head and lie straight, so I don’t have to twist my neck. But in both cases now 22:45 unrest built up somewhere in my torso and I feel I need to twist-stretch it to endure it, which is how I usually lie (and sit): Twisted. How come tho I can lie on my back or front straight when my acupressurist is treating me. Any ideas on this, anyone? I’ll now try to keep my head straight up or down but somehow twist a part of my body, but I think that’ll cause neck-pain again. So I may have to cold shower to get rid of the feeling. Levodopa had increased this unrest, strangely, but I’m looking forward to trying it again, to make sure it was really that.
Now I’ve tried lying down on my front, pillow’s placed, neck straight on torso, freedom to breathe, but I go an itchy face and hand, plus my elbow was starting to hurt, but esp. unrest, which I still can’t define, so I need to cold shower to get that down and start again…

Sitting:

I’m trying to get up as soon as it starts aching. Sometimes same chair will work for a while, sometimes not. I’ve started sitting with one leg under my backside then vice versa again, like I used to - why did I stop tho - has it been better?

Talking: More & earlier timeout-requests

I’ve not been wanting to socialize again, not even with my grandchild. Only with my sis, but she didn’t have time.

GI: Mg causing heartburn, altho it's malate: adjust that

2:25: Heartburn. It’s certainly the Mg malate, altho that’s sposed to be good. Gastritol, soy drink, Gastricumeel. What if I directly took sodium bicarbonate: Would that neutralize the effect of the magnesium? But if this is the formula NaHCO3 + HCl → NaCl + H2O + CO2(g), there is no Mg in it…

RR: 9:30 avg. 122/75 59: Good, just the 3 supps, no meds

9:25 124/79 60, 118/73 58, 125/77 59 = avg. 122/75 59

Therapy:
Docs/Diagnoses:
Development:
In “Sleep” & “Activities” I target various triggers/causes as well as single treatments. And In “Treatments” I focus on general treatments, preventing or alleviating single symptoms as they crop up. Now, after getting a handle on GI, I’m starting to identify my posture symptoms, lying, esp. when trying to sleep sitting, and talking (both work or private), all strong discomfort I’ve been trying to ignore for decades. My RR is important again. This category symptoms cd be for more, but this is the most I can focus on at the mo.

Abbreviations & explanations

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, p2: pain 2 of 7 before peeing, 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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

2021-06-28, Monday - another weird night

Sleep: 9h07, up 7x (2h14) Feeling 90% well, pain 1 of 7

Sleep details: high excitability & nosebleed (Mg??)

!exact times
21:15 Passiflora & Mg & GABA, again not particularly tired.
21:45-
23:07-44 37’ p0 th drink fw35’
00:06 9’ FCS p0 th drink fw1’
2:03 3’ p3 th drink fw1’
3:20 4’ p2 th drink fw1’
4:34 33’ p0 th drink fw1’ teeth apo +1x45 Mg (hunger??), better leave for later.
5:20 taming with 6. 28’ fw 8’
6:54 26’ p2 fw3’ high mental excitability tonight, not due to certain thoughts, nothing that got on my nerves, just wildly racing, not much chance of curbing myself e.g. with mod-posts or apo-order. Suddenly 7:04 nose bleed, haven’t had that at all apart from when starting GABA + Mg + passiflora. Now I’m taking Mg anew, my nose bled anew. A web search shows only 1% of users on eHealthMe, not a particularly reliable source.
7:28-7:50 22’ hungry → eat
-9:06 altho it felt as if I’m not really sleeping the time raced, felt good & sort of nec tho. (get Ache down a bit) RR high??
Sum: 2h15+9h06-(37+9+3+4+33+26ö+22=)2h14 = 11h21-2h14=9h07, up 7x (2h14)
fw 2’

Activities: 4h22 Feeling 90% well, pain 1 of 7

Activity-details: live work 2h10, cycling 62', TT 1h10 4:2, easy

Cycling 8+8+8+8+5+5+5+5+5+5=62’…
TT 1h10, 4:2, easy

Treatments: 1h21 (self) (fw 3h05)

Effects of 650mg GABA, 2x45mg Mg, 2x290mg passiflora, 1x45mg Mg, 1x45mg Mg: good apart from sleep breaks

not too hungry, only at 5:00; much easier to find comfy sleep positions! Mental excitability.

Effects of acupressure: Same

Physio-type self-treatments: 1h21, fibro-work 3h05

* hunchback-hard-cushion 20’, cold shower 1x(10’), thumbnails 10x30’’, AuTr 5’, Timing, neck 1+ 1’, palpate 1’, belly 3’, back 7’, twist-stretch 3’, marionette-hang 1’, gums 2x30’’, RR (3+5+4)x2’= 1h21…
workout 7’, V ‘, neck 2 1’, yoga ‘, loins 1’, breath-hold 11’, shaking dance 1’, *
Fibro-work: Night: 70’ 15:50-17:40: 1h50 21:25: 5’ = 3h05

Symptoms

Lying: A lot better at night, I think due to the Mg!

Sitting: Same chairs are sometimes OK

Sitting: Still bad. Same chairs are sometimes OK for a while (e.g. this evening - due to table tennis before?)

Talking: 10'-20'

Talking: Often 10-20’ limit. Sometimes even loosely chatting to my wife is stressy when it’s longer. Is that OK or something to work on?

GI: OK

GI - no problems, not sure about hungriness, as it says so for GABA for 5:00, but not in the sleep diary above…

RR: 9:25: 121/78 64, 15:53 !!!97/63 72, 21:25 107/67 67

9:15: 143/90 65 & 138/2 62 (running around), 9:23 126/74 64 despite typing, 120/79 62, 121/76 66 = avg. 121/78 64, 15:53: 102/64 73, 112/66 71, 125/57 72, 97/65 74, 96/61 70. avg.: 97/63 72, 21:23: 130/71 67 (after sitting at table), 118/73 66, 105/68 66, 109/66 68, avg: 107/67 67

Therapy: Is my difficulty talking and talking loudly (thru a mask at work?) something for therapy? Or is it normal, just due to less energy?

Abbreviations & explanations

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, p2: pain 2 of 7 before peeing, 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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins

[JayCS]

Highlights and lowlights of the week - June 20th to 26th

1. Status: Continual Flare? “Stabilizing at a low level”. As I wrote longer on Thursday: The % I’m writing how I’m “feeling” is only on a physical level. Inside I feel 95-100% well most of the time.
2. Guinea pig : GABA is still working well, still 1x750mg capsule, adding Mg the night before Saturday - high hopes there. If that doesn’t decrease my night breaks, I’m thinking of trying tiny amounts of L-glutamine (not glutamic acid), gotta watch out for my seizures again tho.
3. Sleep: Amounts: 10h38 9h55 9h05 9h35 8h58 8h10(+1h05) 7h05 has decreased, unsure why. 6:20 seemed OK again, despite me thinking I needed a long lie in “soon”, but the flare on Friday, with an achey night may’ve been a result, can’t see any other reason. Surprisingly good Saturday (80%, but effortless table tennis) and (spoiler:) Sunday (80%) & Monday (90%).
4. Sleep breaks: Only 12’ of breaks in the night before Thursday! - extreme self-discipline plus luck weirdest thing thing week. Looking for a clearer protocol what to do when, i.e. cold shower in the first sleep break, repeat if nec.
5. Pillows: need to swap some nights (then all night).
6. Lying at night as well as sitting in the daytime is both much more harrowing than I realized, as I’d been ignoring these pain/discomfort-types. Both are associated with “all of my rear end”. Acupressure is doing something for a few hours, but it isn’t having an effect on these two yet, my loins are still good tho, stairs usually no problem any more. Still have high hopes it can do more. This involves a lot of invisible things, like cushions, seats, the build of my bikes…
7. Table tennis was very hard on Thurs + Fri, pretty effortless on the other days. If it’d been lack of sleep then Sat wdntve worked out.
8. Big long stint of fibro-work on my references at last was good for my soul, like I’d inferred last week. Bit exasperating that I won’t be able to link as much as I’d planned , but I’m hoping that it’ll be easy to simplify, because many treatments are not that specific.
9. Over an hour of loud talking at work is still too much, Monday showed.
10. (RR seemed OK, need to check more: spoiler: good, despite having stopped candesartan.)

Any ideas?

[JayCS]

2021-06-29, Tuesday - Mg & acupressure: interesting & seminal effects

Sleep: 10h, up 5x (1h08’) Feeling 90% well, pain 1 of 7

(up 35’ due to wanting to write down the side effects of the supps)

Sleep details: Comfy! but druggy & dreamy from +Mg...

!exact times
Mg & Passiflora at meal , GABA 21:39
21:40-
23:01 4’ p2 th drink fw1’
23:11 20’ Cold shower. p2 th drink fw5’
1:48 6’ druggy p2 th drink fw1’ teeth
3:44 3’ druggy p2 th drink fw1’
5:22 35’ (= fw 30’ nec.) p2 th drink fw1’. Nose clotted & weird dream about a Philippino called Ingrid who had stolen my identity, which I only found out because an official police letter had got into my hands, without me being able to see why… totally illogical. Interesting that the main side effects I’d blamed on the GABA (drama dream, dry mouth, nose clotting & nosebleed) are coming up now due to adding Mg again (without the glutamic acid).
p2 th drink fw1’
-8:46
Sum: 2h20+8h46-(4+20+6+3+35=)1h08’= 11h06-1h08’=10h, up 5x (1h08’)

Activities: 5h30 Feeling 90-95% well, pain 1 of 7

Activity-details: music production: 3h20, cycling full! speed 45', TT 5:3, easy 1h25

Speed Cycling 10+10+5+5+3+3+4+4=44’
TT 5:3, easy 1h25

Treatments: 3h (45’ self, 2h15 acupressure) (fw 2h10): GABA good, Mg good & bad, acupressure good

Effects of 750mg GABA, 2x45mg Mg, 2x290mg passiflora, 0x45mg Mg: Good finding sleep positions, but 7 side effects due to the supp-combi...

Energy for everything. Lying comfortably is getting very helpful. The nosebleed the other day, clotted nose once tonight (but only once), dry mouth, drama dream, eyes & mind druggy, plus hungry - but none of them were bad, will get better, and altogether not as bad as the lying comfortably is good…

Effects of acupressure: Brilliant, so much energy for cycling even faster

Energy for everything

Physio-type self-treatments: 44', acupressure 2h15 fibro-work 2h10...

hunchback-hard-cushion 10’, cold shower (10’), palpate 1’, belly 3’, back 7’, gums 2x30’’, thumbnails 12x30’’, twist-stretch 6’, = 44’…
AuTr ‘, Timing, neck 1+ ‘, workout 7’, V ‘, neck 2 1’, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’
Fibro-work: Night: 40’ 18:00-19:30 = 2h10

Symptoms

Lying:

Lying’dve been uncomfy if I didn’t have the treatment, the knee roll is different to my bed. My acupressurist suggested trying different pillows.

Sitting:

Didn’t sit much, music production I did standing.

Talking: Nothing new today

GI: Good, except hungry at 5:00, but soy drink was enough.

Week 20th to 26th.

Abbreviations & explanations

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, p2: pain 2 of 7 before peeing, 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 “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
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. At night with ear plugs & all lights off.
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.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins