JayCS’s Fibro Blog

[Freedom]

I’m a little messed up JayCS. . I’ve been reading your posts out of order. And I didn’t realize it. Ahhhh. Here are my “ late” and a bit sarcastic comments. Oh wow! Gee! Your dentist admitted that sometimes patients know themselves better??? Seriously? Can you believe it? That WE the patients might know ourselves better? Mmmmmmmmmm . Now on a more serious side, I’m glad you go to therapy. I think every person on the earth could use some therapy. I have a huge history of trauma. I see a therapist 3 times a week. She specializes in trauma. And she goes a step further and researches new techniques to help trauma patients. She has taught me how the vagus nerve plays a huge part on how we react to trauma, that is no longer happening. The fight, flight, fear reaction. Some of the types of therapies she’s used are EMDR, Brain Spotting and most recently The Flash Technique. I don’t like the word flash so we call it The Grace Technique. You can look it up on the internet but the latest information has not yet been updated on the internet. It allows trauma patients to deal with their trauma without going into detail about what happened. She said that talking about trauma has now been shown to re traumatize patients thus making it difficult to heal. I can tell you first hand that it works. It’s actually been the first type of therapy that has worked for me. I’m finally healing after years of therapy and different therapists. She’s not saying don’t talk. It’s that with this therapy you don’t have to go into details. I hope I’m making sense. My shoulder is starting to hurt so that’s all for now.

[JayCS]

2021-07-29, Thursday - recent developments, new ideas ➜ re-ordering

Triggers & resulting Symptoms

SLEEP: 9h19, plus up 4x (13'), plus creative 1h40 ↔️ Feeling 80➔90% well, pain 2➔1 of 7 ✅ I shdnt curb my creative flashes too much, and didn't (a fibro work rap for my newest song), but interesting how longest sleep breaks are at 6am, in this case preceded by a (short) 30' stint and today followed by an enormous 2h45 one, so it obviously wasn't enough!

➔↯ ↛↺⇄↮⇝⇨➜➞:arrow_right:➲→↔⇰⇾⟹⭆⤮
2x2 Mg & 2x Passiflora & Gastritol & psyllium & Ω3 & perenterol before meal 19:00, 1200mg GABA & 600mg Glutamine & 1x Passiflora 22:15.
22:30- FCS#1
1:21 3+14’ p2 drink Gastritol fw1’ music-creative
3:25 8’ p0 music-creative Gastricumeel
5:11 4’ p0 th drink Gastritol fw1’ teeth
5:34 1:21 - 6:55 dose.6 -7:20 nose slightly clotted, wanting air, fresh air: nose massage open window.

creative flash: Rap for my song, centring on fibro work... (composed, practiced slow, adjusted, practiced faster, almost full speed)

1 Can I make it 2 out, without a 3 doubt? How 4 loud do I 5need to shout it 6out, outta my 7 snout? 8 —
1 Always in the 2 fast lane, 3 always disre 4 garding pain, the 5 cane in my brain, 6 wanning to reign, 7 making me get 8 up again (and again) Now
1 pow, how can I 2 vow not to al- 3 low it to my 4 eyebrows, not 5 highbrow, snow- 6 plow thru some- 7 how to a 8 powwow (yeah wow) So
1 what’s the clue, 2 where’s the coup, 3 summink new to my 4 crew who knew? To a 5 breakthru, 6 -— that’s due, so 7 overdue - 8 over to you:
Whoever is reading this is ‘my crew, who knew’ … about fibro before I did, probably.

-9:40
Sum: ((1h30+1h21=)2h51+(3h25-17-1h21=)1h47+(5h11-8-3h25=)1h38+(5h43-4-5h11=)28’+(9:40-6:55=)2h45=)2h51+1h47+1h38+28+2h45=9h19 plus up 4x, (3+3+4+3=)13’, plus creative 14+5+1h21=1h40.

ACTIVITIES➔ACHE: Cycling fast 2x10'➔90%/1, Talking, thru mask 1h➔70%/2. ✅

Cycling 5+5… =’
Talking:

ACTIONS➔PAINS: 1) Sitting 15:30 ➔ pain of 4, 'normal' on our kitchen chair ❌. 2) Tenseness (slightly) in zoo yesterday ➔ jaw pain of 3 8x1' ❌. These types of pains need more looking into, see 'development' 🧐 3) left plantar pain of 2 x1' 4) Bladder: 14:30 p0 19:30 p1/2

Lying good, standing good for a while, , GI:

Treatments

SUPPS Fx: Quite good night ('too' creative), quite good day (bit of fatigue, but probably due to too uncontrolled fibro-work plus long activities yesterday) ✅, Sfx: no GI problems, D rather than C, ✅ so I think I shd increase theanine to ↗ 300mg

2x400mg Mg malate, 2x500mg Mg glycinate, 3x290mg passiflora, 1200mg GABA, +600mg L-glutamine +200mg theanine: (? )

SELF-PHYSIO: ? (guess: 30') ✅, fibro-work ? (guess: 4h)

= ‘…
Timing, AuTr ‘, hunchback-pillow ‘, cold shower (10’), palpate 1’, belly 3’, back 7’, workout 7’, twist-stretch 2’, gums 2x30’’, thumbnails 10x30’’, neck 1+ ‘, neck 2 1’, V ‘, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’
Fibro-work: Night: = h

THERAPIES Fx/Sfx: Acupressure ✅/ Therapy ✅/ Docs/Diagnoses: Yesterday my LDL cholesterol result was 46, due to the strict Mediterannean target is <70 ✅✅✅✅❗❗❗My experiment to stop taking the ezetimibe & atorvastin has an astonishing head start! ✅ ❌ 🧐

Acupressure 1h Tues & 0 Fri (due to her having an erysipelas, praps not the zinc after all.):

Development

Lessons in self-care #42 Yesterday the new type of fibro work made me forget eating properly.
Reasons to be cheerful #38 My 3’ energy bursts have increased from to 10’+ due to the GABA (e.g. yardwork 2h). ➔
Lessons in self-care #43 The improved energy bursts make pacing harder.

Development of symptoms: Noticed much increased length of energy bursts, cf. Rtbc #38
This and sometimes less Ache requires a new focus, so re-ordering of each blog entry.

Development of blog entries: Strong sitting pain of 5 (of 7) yesterday in the zoo café & today in the kitchen brought to my attention that the category ‘symptoms’ isn’t detailing pain enough, i.e. I’m not pinpointing it enough, thus suffering without learning from it and also not conveying the amount of pain here/for others correctly.
Also I’ve been separating the ‘pain’ due to activities, because that’s usually an ache, The Ache.
Now I’ve got that pinpointed well, better after the last blog entry change, it’s time to re-order and re-categorize. Interestingly I’ve made a big difference between the Big Ache and the single pains since early on. And have been thinking I can now keep getting the pains are down to zero, but the Ache is continuing when I can’t pace properly. This is true for most pains, esp. those that seem to appear by themselves and stay for a pretty long time. These have been reduced by cryotherapy, osteopathy, yoga, pinpointing and esp. acupressure. The remaining pains aren’t negligible tho, altho I can sometimes get them down quick. Sitting is probably one of the biggest, that’s why it’s becoming more and more conspicuous. This is a pain that I’ve had most of my life and always has been a pain of up to 7 or 8 (i.e. can make me cry or scream, makes me go mad), at the moment often 5 until I can get it down with exercising. Talking thru the mask produces a bit of Ache, a lot of fatigue and just a horrible feeling hard to describe, even for me, not really a pain. So that has to go up to the “Activities” part, which I am re-naming Ache due to activities. Lying, bladder, GI etc. are all single pains due to “activities” which aren’t special activities, just the normal day-to-day things we do. What do we call this? Posture, eating, excreting… occasionally moving, like neck. Looking up similar words I think ‘action’ might be best, altho lying as opposed to sitting and standing seems to be a position, but actually I feel I am pretty active when trying to find or change or recover from a certain lying position.
Now that seems to suggest in analogy to the order of the reference lists, re-ordering blog entries with Triggers first, then Symptoms, then Treatments, altho the long-term treatments do not necessarily correspond to the symptoms on a certain day, etc., and inside the symptoms differentiate The Ache from the pains, iniside the Treatments differentiate self-treatments first from expert treatments after.
Best use headers first to show how A) triggers are 1) activities or 2) actions, that cause B) symptoms 1)
Ache vs. 2) pains, whilst I may refer to direct treatments as the symptoms B) arise after being triggered, and/or C) treatmensts separately whether or not they are being done generally.
That’d mean I’m using headers again, at least for a time to get the new order clear.
Maybe this new order doesn’t make sense, let’s see.
The Ache usually comes from overdoing activities, i.e. it comes up AFTER ACTIVITIES, and during it I nowadays often feel really good for quite some time, and normal, don’t feel the Ache yet, but it may make any pains more perceptible.
The pains do not come from overdoing it, they come DURING ACTIONS, I think from something like microtension in the muscles, due to or plus wrong posture due to scars, slight osteochondrosis and various twists & turns of my spine, as well as tendon-sensitivity around all large joints. (Everyone doubts my hopefully harmless spinal tumour does not cause any of the pains or discomfort.)
BTW, my feverishness has improved with my sleep; I still get it sometimes when I’m actually asleep, but ‘overdoing’ it, instead of drowsing around.

Highlights week 18th to 25th.

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]

2021-07-30, Friday

Triggers & resulting Symptoms

SLEEP: 6h42, plus 1h38' doze = 8h20, plus up 5x (18') ↔️ Feeling 80% well, Ache 2 of 7, inexplicably awake too early again, only dozing afterwards, so Achy now. This is silly. I think ↗ theanine first, then ↗ GABA again. ✅

2x2 Mg & 2x Passiflora & Gastritol & Ω3 at meal 20:00, 1200mg GABA & 600mg Glutamine & 1x Passiflora & 400mg theanine 21:50.
FCS#1 22:20-
23:34 6’ p3 th drink teeth fw3’
0:18 3’ trousers & sox on p2 th drink fw1’
1:24 3’ p2 th drink
2:08 3’ p2 th drink: funny how my bladder takes over after forgetting to put trousers & sox on from the start… put a long-sleeve on, not too hot at all.
3:30 3’ p1. fw2’
5:20 30’ 6, 16’ dozing.
-6:06
p0 th drink Gastritol fw1’ teeth FCS#2? +600mg capsule GABA?*
Sum: 1h40+5h20-(6+3+3+3+3=)18’= 7h-18’=6h42, plus 16’ doze = 6h58, plus up 5x (18’),
7:13 p0. Less urge l➔ ess hurt? Longsleeve on again.
7:16-8:38 1:22 dozing. 6h42, plus 1h38’ doze = 8h20, plus up 5x (18’),

ACTIVITIES➔ACHE: Cycling, helping out with cryotherapy/Talking, doc for blood results ➔ 70%/3 ❌ (shop 5') (jog 4') ✅

Conclusion from helping out with cryotherapy: Better not do too much more, not worth the effort/stress/ache.

ACTIONS➔PAINS: Walking: plantar 2, 30', left knee 2, 10', elbows 2, 20'. ❌Shoes/socks on/off: loins right 3. ❌Bladder 21:30 p3 22:05 p1, 23:35 p3, mainly p1 in the daytime ✅ (Less urge l➔ ess hurt?) jaw 22:20 4x1' (getting better despite dentist ✅) Sitting: Bar stool in kitchen is better than the kitchen chair, sitting on floor next to couch is always pretty good too. ✅. GI: OK today, but let's see what eating a bit of tofu with garlic and an oat joghurt with mould does to me tonight.... ✅

Lying, standing,

Treatments

SELF-PHYSIO: 45' ✅, fibro-work ?3h

Timing, cold shower (10’), AuTr 5’, hunchback-pillow 10’, thumbnails 10x30’’, palpate 1’, belly 3’, back 7’, twist-stretch 2’, neck 1+ 2’, = 45’…
workout 7’, gums 2x30’’, neck 2 1’, V ‘, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’
Fibro-work: Night: = ?3h

THERAPIES: Doc/Diagnoses: Blood results were great for thyroid and blood fats, so leaving the statins might work! (He said I can try reducing... ) ✅ ✅:

TPO is down from 65 to 40 to 37 U/ml , so thyroid is improving, praps due to the
selene I’m taking, which he recommends continuing altho it’s 122, 2 mcg/l more than the max. ,
zinc is 830 mcg/l, which is in the middle, so I cd take some again,
B12 is 411pg/l, in the middle, I cd take some again if I feel like it, but the
BEST NEWS is the
BLOOD FATS are down:
LDL is still 48, due to the Mediterranean diet: I only have to stay under 70;
triglycerides are 104, have to be under 200 (that’s where they used to be), and
lipoprotein (a) is down from 154 to 122 (which’ll probably go up again tho… - let’s see)
Acupressure (1h Tues & 0h Fri due to her erysipelas)

SUPPS: Still stopping sleep too soon after 7h, despite few breaks, despite ↗400mg theanine. ✅, GI still more D than C, despite 400mg theanine ✅, bit cold at night, hungriness OK.

2x400mg Mg malate, 2x500mg Mg glycinate, 3x290mg passiflora, 1200mg GABA, +600mg L-glutamine, 400mg theanine.

Development

Lessons in self-care #44 Helping out with cryotherapy, so my acupressurist can lie down more for her erysipelas, is stressful for me. I don’t want to do anything wrong and talk to the patients. Got to say no on Monday.
Since actions/pains usually don’t prevent me from “feeling well”, a % is only given for sleep & activities.
I know how to reduce the pain b4 peeing by a) stretching backward or b) tensing lower back muscles, however I’m trying to see when the supps are improving it, so I’m not using these techniques.
Here I mention that my sleep psychiatrist threw up the question if I have CFS in January. I used to think no, but that’s changed. But I don’t really care what it is. OTOH D-Ribose might be more helpful for the CFS part if it is that thrown in.
Interesting reading old posts of mine… some day I’ll read it thru again from the beginning…

Highlights week 18th to 25th.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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]

2021-07-31, Saturday - up extremely early, recovered tho. GABA next.

Triggers & resulting Symptoms

SLEEP: 5h15, plus up 2x (10'), plus 17+13+1h26+10=2h06 doze = 7h23 + 21' AuTr-nap ↔️ Feeling 80% well, Ache 3 of 7 ❌. Itchy scalp and overactive brain, praps also feeling cold (socks have too big holes after only a few months...). FCS for the Ache. Bed earlier tonight easier? In contrast to my thoughts on Tues 27th theanine is doing its stuff for a 5-6h, but it's not the work break that's been helping sleeping. Or was it the filling-in yestrday? No acupressure on Thurs/Fri may've been a problem, while GABA may have to be increased again after all, cf. Supps.

2x2+1! Mg & 2x Passiflora & Gastritol & Ω3 at meal 19:00, 1200mg GABA & 600mg Glutamine & 400mg theanine & 1x Passiflora 21:55
FCS#1 22:00-
23:56 3’ p01 drink Gastritol fw1’
2:50 7’ p01 drink Gastricumeel fw1’
-3:25 fw 32’ +7’ FCS#2, shdve done that straight away… → 17’dozing
4:21-5:38 1h17 fw 5’ + 6. + fw (20’) + dozing 13’
-5:51 wide awake
th teeth FCS#2? + GABA?*
Hurting, altho wide awake… (blue light going on in laptop as it’s 9am)
8:58-10;24 =1h26 just dozing. Someone drilling outside.
Sum: 2h+3h25-(3+7=)10’= 5h25-10’=5h15, plus up 2x (10’), plus 17+13+1h26+10=2h06 doze +21’ AuTr = 7h23
11:01-10 = 10’ doze
15:50-16:11=21’ AuTr

ACTIVITIES➔ACHE: Cycling 1h10 ➔ 90%/1 (pains only in elbows a bit, back, feet & neck OK) ✅

Cycling 5+5+1h=’

ACTIONS➔PAINS: Bit tense: Jaw 8x1' ❌, Thirsty/headache: drink lots ❌ Bladder: p1 all day. ✅ GI ✅ All postures

Lying, sitting, Talking:

Treatments

SELF-PHYSIO: 1h40 FCS 80%/2 ✅, fibro-work ?4h

Timing, AuTr 40’, hunchback-pillow 10’, cold shower 3x(10’), palpate 1’, belly 3’, back 7’, workout 7’, twist-stretch 2’, gums 2x30’’, thumbnails 2x30’’, = ‘…
neck 1+ ‘, neck 2 1’, V ‘, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’
Fibro-work: = 4h?

THERAPIES: Cryotherapy 80%/1 / Therapy, Doc/Diagnoses ? ✅ ❌ 🧐

SUPPS: Awake much too early, got to change something. A study in mice says GABA: theanine 5:1. Done that at the lower dose, so upping GABA is next. theanine 100-400mg ❌, Jaw tension also means GABA↗. GI ✅ Isn't taking stomach stuff only relevant for a few hours after taking the supps? But sometimes the stomach burning develops at 6 or 8, so....

2x400mg Mg malate, 3x500mg (by mistake) Mg glycinate, 3x290mg passiflora, 1200mg GABA, 600mg L-glutamine, 400mg theanine: (? )
GABA and l-theanine mixture decreases sleep latency and improves NREM sleep - PubMed / GABA and l-theanine mixture decreases sleep latency and improves NREM sleep
uses GABA+theanine, better than each alone. 100/20 mg/kg. Me weighing about 81kg means 8100 GABA and 1620mg, but it’s mice they’re talking about, and it’s the ratio of 5:1, so if I’m taking 400mg theanine, that’d mean x5=2000mg GABA, or if I’m taking 1200mg GABA it’d be /5= 200mg theanine.
GABA. I’ve tried the latter already, so upping the GABA again would seem right.

Development

Lessons in self-care #45 Additional cryotherapy despite 3 cold showers, but
Reasons to be cheerful #39 it showed I don’t need it that much, usually pretty full energy from the GABA.
Reasons to be cheerful #40 Pretty recovered in the course of the day, despite 5h15 deep sleep, <8h altogether, and managed lots of exercises and fast cycling.

Highlights week 18th to 25th.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[JayCS]

Highlights of the week - July 25th to July 31st/Aug 1st

1. Re-ordered entries by the end of the week
2. Supps: Nothing is helping the waking up too early often again at the moment.
3. I’ll try upping 1200 GABA with a 2nd dose (300?) at around 4:00 again (or 3:00?)
4. 600 glutamine, 400 theanine (in capsules), 0 tryptophan seemed OK now.
5. Bladder pain has been mainly 1 the end of the week with theanine at 400.
6. So now theanine (then serrapeptase, 50mg levodopa, D-Ribose, Schüßler 2/4/7, essential oils?)
7. Activities fairly good this week, but 5h zoo/restaurant was too much. Walks OK.
8. Doing something live-work-like is just as stressful.
9. Acupressure not being done was bad for my arms, getting worse again (?), neck OK, loins OK.
10. Symptoms: Deep sleep this week: 53h07, avg. 7h35, incl. dozing: 58h20, avgl. 8h20.
11. Sleep is much reduced, roughly just as tired: More effective? Restorative? GABA? Work break?
12. GI: Theanine took my ISB to C for a change, so good to leave the psyllium & Perenterol.
13. Stiffness generally down to 1’ again (GABA!).
14. Much longer high energy now (since GABA?), rather than bursts, as long as I don’t overdo it.
15. Exchanging the kitchen chair with my bar stool is an improvement.
16. Still got to keep an eye on my jaw after the eulogies and tooth cleaning, but getting better.
17. Bladder pain a bit further down, but still 1x3 a day on avg. Feels a bit flaccid (inside ).
18. Reminder: I could reduce it physically, but I want to measure how the amino acids improve it.
19. Generally looking at my single pains in more depth, now big things have improved…
20. so changed blog entries: Activities lead to Ache (more after) and Actions to pains (more during).
21. Ordered blog entries like my lists in Causes & symptoms and then treatments, grouped differently.
22. My fever-feeling has been greatly reduced thru “improved” sleep, btw.
23. Started on a fibromyalgia glossary for FMA UK instead of the reference lists. Addicted first, then OK.
24. Dx: All blood fats low! so stopping ezetimibe+atorvastatin is hopefully no problem.
25. Can’t feel any difference from leaving off the blood meds.
26. Thyroid even better, so keeping on selene; zinc + vitamin B12 are in the middle, so addable.

[JayCS]

2021-08-01, Sunday - no sudden energy breakdowns for weeks/months, since GABA

Triggers & resulting Symptoms

SLEEP: 8h29, plus up 8x (35'), plus 12' doze = 8h41 ↔️ Feeling 90% well, Ache 1 of 7 ✅

2x2 Mg & 2x Passiflora & Gastritol & Ω3 at meal 19:00, 1200mg GABA & 600mg Glutamine & 1x Passiflora 21:40.
22:10-
23:07 3’ p0 th drink Gastritol fw1’
23:37 3’ p0 drink fw1’
0:54 5’ p1 HWB drink fw1’ + 300mg GABA.
1:15 8’ FCS#1 drink Gastritol
2:32 4’ p1 th drink fw2’
4:10 5’ p1 teeth Gastricumeel fw1’
5:14 3’ p1 drink Gastritol fw1’
6:28 4’ p2 drink fw1’
-7:16 3’ p0 nose clotted, praps too warm? Burning Headache (as result or from not drinking enough yesterday or from GABA), hunchback burning despite or bc of cushion under it? Tired, burning eyes, feels as if I still need to sleep (from +300 GABA?)
What can I do: freed nose with massage, fresh air. Cold shower?

• doze 12’.
  OK that’s a bit too much pain to call it 90%/1, and too long, haven’t been tracking it enough.
  (Research trigeminal sympoms?)
  Sum: 1h50+7h16-(3+3+5+8+4+5+3+4=)35’= 9h06-35’=8h29, plus up 8x (35’), plus 12’ doze = 8h41

ACTIVITIES➔ACHE: Sitting/resting with fw/music all day ?8h, housework 30', cycling really fast ?60' ➔ 90%/1✅

ACTIONS➔PAINS: Getting up is no longer that stiff (since GABA), but a pain with stiffness of (decreasing from) 4 for about 1'. ✅ No jaw pain or tenderness after the longer sleep tonight (and Marigold essence), still tense tho, so concentrated on keeping relaxed, worked out, only slight inclinations. ✅. First day for (almost?) 2 years that I left the window of my room open all day, meaning better tolerance of cool air (unless it was the first day where it was neither hot nor cold...) ✅

Lying, standing, sitting, Talking: GI: Bladder: Getting up. Jaw.

Treatments

SELF-PHYSIO: 47' ✅, fibro-work ?8h

Timing, AuTr 5’, cold shower (10’), hunchback-pillow 20’, Hot water bottle 3’ twist-stretch 2’, gums 2x30’’, yoga 4’, shaking dance 2’, = 47’…
palpate 1’, belly 3’, back 7’, workout 7’, thumbnails 0x30’’, neck 1+ ‘, neck 2 1’, V ‘, loins 1’, marionette-hang 1’, breath-hold 11’, RR x2’
Fibro-work: = 8h

THERAPIES: OK without acupressure, cryotherapy doesn't do much any more. ✅

Acupressure 1h Tues & 0h Thurs:

SUPPS: Drowsier at night, but still many breaks, awake at day. ✅, GI: no problems. ✅ (?↗ ↘)

2x400mg Mg malate, 2x500mg Mg glycinate, 3x290mg passiflora, 1500mg GABA, 600mg L-glutamine, 400mg theanine:

Development

Lessons in self-care #46 So much fibro work, but fun…
Reasons to be cheerful #41 Got a helluvalot done…

Maybe improved stiffness and energy are related.
It’s wrong to still talk of energy bursts, like I did last Thursday. I have a lot more energy, esp. for cycling, however not for live work, and it doesn’t break down after any amount of time, if at all it tapers out or I get exhausted slowly, and I don’t realize it, so the Ache & exhaustion comes afterwards. That’s what makes pacing harder now, but necessary all the more, as the short visit to the zoo on Wednesday showed.

Highlights week 25th to 1st.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[JayCS]

2021-08-02, Monday - probably Serotonin Syndrome (5 symptoms) from too much GABA, so a bit less again…

Triggers & resulting Symptoms

SLEEP: 4h20, plus up 1x (5'), plus 0 doze. Plus 1h48 = 6h08 + 18' doze = 6h26 ↔️ Feeling 80% well, Ache 3 of 7. Need to be more precise here! Nose clotting & thus headache made me stay up at 3. Shd brush teeth & cream thumbnail when that happens to use the time effectively. As it is my mind has been animated to think about invisibility, chronicity & complexity as core qualifying symptoms of FM. Try more clothes & HWB bc I'm feeling cold - but why, it's 20°C! Blood pressure, caused by supps? So measure bp. No, normal (day) level. Next time: Warm/cold shower alternately. (I do have The Ache at night too every time I move, gotta watch that one too. ❌?→✅

!exact times ➔ ↯ ↛ ↺ ⇄ ↮ ⇝ ⇨ ➜ ➞ ➲ → ↔ ⇰ ⇾ ⟹ ⭆ ⤮:↔:
2x2 Mg & 2x Passiflora & Gastritol & Ω3 at meal 19:00, 1200mg GABA & 600mg Glutamine & 1x Passiflora 21:40.
FCS#1 22:25- (3h stint: FCS?)
1:08 5’ p1 drink Gastritol fw1’ + 300mg GABA
2:50 45’ p1 drink Gastritol fw1’ nose clotted/headache: up a bit, fw’ 35’ a bit more , drink Gastricumeel. shd brush teeth & cream thumbnail every time.
4:00-4:16 RR 144/88 60. 137/81 55, 126… 130/76 54 121/78 53 139/79 57 124/73 52 131/80 54
So pulse is around 55, RR centering around 130/77
But not tired any more.

p0 th drink Gastritol fw1’ teeth FCS#2? +600mg capsule GABA?*
-end
Sum: 1h35+2h50-(=)5’= 4h25-5’=4h20, plus up 1x (5’), plus 0 doze.
6:30 My body is starting to ache, maybe tired enough again now?
6:40? no: 7:10-
-8:57- 10’ p0 drink fw 7’
-9:18 5’ fw 3’ 10’+ of that dozing
2h08-10’= 1h58 minus 10’ doze, plus 9:23-9:31 8’ doze
4h20+1h48 = 7h08 + 18’ doze = 7h26

ACTIVITIES➔ACHE: Cycling 20', Helping cryo out, cycling 60' ➔ 90%/1 ✅, just a bit tense. Socializing 3h instead of catching up some sleep: headache of 2-6, slightly nauseous, but good apart from that & tiredness and getting walloped in the eye by my grandchild, with energy ➔ 70%/3 ❌ Check serotonin syndrome...

Cycling 11+11… =’

ACTIONS➔PAINS: Quite OK, but jaw a bit when socializing despite tiredness, and headache evolving. Sitting worse than standing. ✅

Lying OK, standing OK (incl. partly on bike), sitting OK, except on bike. Talking: OK, but small talk ain’t ever easy. GI: Good, despite regularly specks of garlic. Bladder: Good. Jaw: gone in the morning, just have to keep relaxing. There in the first hour playing with my grandchild, until I went into a drowse mode.

Treatments

SELF-PHYSIO: 62' ✅, fibro-work ?3h, RR at 4 from 144/88 60 to 124/73 52, at 21:00 from 142/77 71 to 125/73 69, both a bit too high, cd be serotonin syndrome

Yesterday due to getting carried away with the fw I didn’t do my exercises after bed, so had to do them before bed. Luckily my hunchback didn’t resent that, was better at night.
AuTr 5’, hunchback-pillow 10’, cold shower (10’), RR 8x2’, palpate 1’, belly 3’, back 7’, twist-stretch 2’, , shaking dance 4’ neck 1+ 1’, loins 3’, = 62’…
Timing, workout 7’, gums 2x30’’, thumbnails 10x30’’, neck 2 1’, V ‘, yoga ‘, marionette-hang 1’, breath-hold 11’
Fibro-work: Night: ?3h = h
RR see sleep,
then 20:40 142/77 71 132/73 70 132/75 65 125/80 70 132/73 69. 133/83 70. That’s a very high pulse… see supps.

THERAPIES: Cryotherapy today was quite OK. ✅

Acupressure 2h Tues? & 2h Thurs?: neck & left loin are still good.

SUPPS: 1) Headache & 2) higher (not high) blood pressure and 3) pulse at night and afternoon, plus 4) feeling cold and 5) restlessness: Might be serotonin syndrome (see mayoclinic-link) ❌, so 1500mg is too much, maybe check if that also happened when taking it before. Can I get used to it? I was wondering whether taking +300mg GABA too early was a problem or downing the passiflora, but now it looks as if it was too much GABA at once, i.e. the +300mg was too early, at 1, instead of at 4. GI: good tho, had to eat at night, but only cos being up makes me hungry. ✅

2x400mg Mg malate, 2x500mg Mg glycinate, 2x290mg passiflora, 1200mg GABA+300mg=1500mg, 600mg L-glutamine, 400mg theanine:
Serotonin syndrome - Symptoms and causes - Mayo Clinic

Development

Lessons in self-care #47 Keep activity down again tomorrow.
Reasons to be cheerful #42 Now I know 1500mg was way too much GABA, at least “at once” (1200 at 22:00, 300 at 1:00).

Highlights week 25th to 1st.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[JayCS]

2021-08-03, Tuesday - still astonishing energy considering how little sleep every day…

Triggers & resulting Symptoms

SLEEP: 5h12-15'=4h57, plus up 4x (1h51), plus doze/AuTr/sleep? 3h01 = 7h58 ↔️ Feeling 90% well, Ache 1 of 7, no headache/clotting, no GI ✅ (not perfect, but OK, considering)

2x2 Mg & 2x Passiflora & Gastritol & Ω3 at meal 19:00, 900mg GABA & 600mg Glutamine & 1x Passiflora & 350mg theanine 21:40
FCS#1 teeth
22:02-
0:22 10’ OK up to now, headache down. p1 (downstairs nec.) drink Gastritol.
1:58 5’ p1 HWB (bit cold). Nose & head still OK. fw2’
-3:14 3:51 37’ Up. Now nose starting, bit stiffer and drowsier, meaning that 900mg is still over the max., I cdve gone down from that. But managed 5h sleep already. Now short break to get the nose before another headache starts. 15’ fw, then drink Gastritol (stomach burn as I haven’t taken enough yet.) Don’t feel like warm/cold shower at the mo, brushed teeth already. Still stiff after the break… Now - after looking for ordering new Gastritol & serrapeptase - nose is free again and no headache, feels good. th. Gastricumeel.
3:51-4:50 59’ Dozing/AuTr, nice. Very slight nose, very slight headache. Mind awake, with thoughts what to do (fw, but HOUSEWORK first), but eyes itchy-tired. Since no GABA possible it’s only a warm then cold shower I cd now try. p0-1
4:50-4:54 fw4’. 4:54-5:13 19’ Serrapeptase-search. 5:13-17 4’ Warm&cold shower. p1 drink for slight stomach burn.
5:13-6:16 Nice dozing/AuTr
6:16-6:58 = 42 6.
6:58-7:47 Nice dozing/AuTr, maybe a bit of sleep.
7:47- p0
Sum: 1h58+3h14-(10+5=)15’= 5h12-15’=4h57, plus up 4x (5+37+27+42=)1h51, plus = 59’+1h13+49’ doze/AuTr/sleep? = 3h01 = 7h58

ACTIVITIES➔ACHE: Cycling, shops, cat-sitting ➔ 90%/1 ✅

Cycling 5+5… =’

ACTIONS➔PAINS: all same

Lying, standing, sitting, Talking: GI: Bladder:

Treatments

SELF-PHYSIO: 1h42 ✅, fibro-work ?4h30, normal bp: avg. 123/74 62 at 16:00 ✅

* (Timing), AuTr 40’, hunchback-pillow 20’, cold shower (10’), palpate 1’, belly 3’, back 7’, yoga 4’, loins 3’, RR 3x2’ = 132’…
workout 7’, twist-stretch 2’, gums 2x30’’, thumbnails 10x30’’, neck 1+ ‘, neck 2 1’, V ‘, marionette-hang 1’, breath-hold 11’, shaking dance 1’, *
Fibro-work: 45h30
RR: 16:18 113/74 64 127/76 62 123/71 61

THERAPIES: Acupressure today: backside & neck/shoulders of my back. Felt loose down below, but also pretty knackered after. No improvement on sitting (or sleep) 🧐

Acupressure 2h Tues: & 2h Fri.

SUPPS: ↘900mg GABA to normalize my serotonin again ✅, GI ✅

2x400mg Mg malate, 2x500mg Mg glycinate, 3x290mg passiflora, 900mg GABA, 600mg L-glutamine, 350mg theanine:

Highlights week 25th to 1st.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[JayCS]

2021-08-04, Wednesday

Triggers & resulting Symptoms

SLEEP: 8h22, plus up 4x (1h23), plus 56' AuTr = 9h18 ↔️ Feeling 85➞90% well, Ache 2➞1 of 7 ✅ I think bed earlier is quite a bit better (unfortunately)

2x2 Mg & 2x Passiflora & Gastritol & Ω3 19:30 before meal, 600mg GABA & 600mg Glutamine & 1x Passiflora & 300 theanine 21:30.
FCS#1 21:40- (more clothes on immediately)
0:34 p4! 10’ Sore throat → gargling with Marigold & HWB. Still a bit cold, so I’ll stay down with the GABA. fw3’
2:27 57’ p3 Marigold. Slight forehead headache without clotted nose. fw30’ till headache gone. Drink, Gastritol. +600mg GABA at 3:10. fw20’ = 50’
4:58 3’ p1 Marigold. Drink.
6:44 13’ p0 drink fw10’
-7:25 1h22’ hungry → ate. p0 without any urge - wd that always work? Try? 1h15’fw 6.
9:39-10:35 AuTr.
Sum: 2h20+7h25-(10+57+3+13=)83’= 9h45-1h23= 8h22, plus up 4x (1h23), plus = 56’ AuTr = 9h18
Remember to fill in the blanks yesterday, and add a 2nd cold shower (even if it was warm n cold)
Jaw, sitting ideas…

ACTIVITIES➔ACHE: Cycling & 30' 'easy' gym machine workout ➔ 90%/1 ✅

Cycling 8+8. =16’

ACTIONS➔PAINS: Bladder: p0.5 after gym?! ✅

Lying, standing, sitting, Talking: GI:

Treatments

SELF-PHYSIO: 1h20 ✅, fibro-work ?4h

Timing, AuTr 40’, hunchback-pillow 10’, cold shower (10’), palpate 1’, belly 3’, back 7’, Yoga Nidra 10’ = ‘…
workout 7’, twist-stretch 2’, gums 2x30’’, thumbnails 10x30’’, neck 1+ ‘, neck 2 1’, V ‘, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’
Fibro-work: = 4h?

THERAPIES: Acupressure: No sitting or sleep improvement yet 🧐

Acupressure 2h Tues & 2h Fri:

SUPPS: ↘300 theanine, ↘2x600 GABA ✅, GI: OK ✅ (?↗ )

2x400mg Mg malate, 2x500mg Mg glycinate, 3x290mg passiflora, 600+600mg GABA, 600mg L-glutamine, 300mg theanine:

Yoga Nidra impressions from youtube videos: Relaxation like autogenic training, with breathing, counting, a scan of parts of body parts (but each finger, front and back etc., fairly quickly), at the end rapid image visualization in this video (all nature: candle flame, sunset, waves, star, full moon, bird flying, mountain top, red rose, each about 5-10’’).

Development

Due to Dennis reminding me of glycine to improve GABA-intake plus the serotonin syndrome I had, I’ve been thinking if it’s the magnesium bisglycinate which is screwing sleep up a bit and seen that I’d had bad sleep on July 10th, after taking it the first time.
Also I keep forgetting which supps are up next, so I’ll add a “To Try” / “Up next” category.

Lessons in self-care #48 At 21:00 I was realizing I was starting to ache quite a bit (2), time for bed.
Lessons in self-care #49 So much to do, so little time, people want to meet me, but I need to select.
Reasons to be cheerful #43 I much prefer day energy & a clear head to drowsy sleeping at night! (GABA + theanine)
Reasons to be cheerful #44 Sleep seems less bc I am now just getting up as soon as I am awake.
Reasons to be cheerful #45 Also bc I’m not counting dozing straight any more.
Reasons to be cheerful #46 Managed a gym workout today - feels good up to now…!

Highlights week 25th to 1st.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[JayCS]

2021-08-05, Thursday - glutamin might still be a/the problem… so stopping it Thurs/Fri.

Triggers & resulting Symptoms

SLEEP: 3h55, plus up 3x (14'), plus doze/AuTr = 3h09, ➡ "7h04" ↔️ Feeling 80% well, Ache 2 of 7 ('sore', from gym or sleep breaks) ❌/✅. I made a self-control effort tonight - but feel like giving up again on reducing breaks! ❌ But no, analyze, learn!!: 4h good, then warm/cold shower at 2 didn't help, so shd maybe've tried +600 GABA then instead. But actually nothing seems to be helpful for sleep breaks, altho theanine is helpful for shortening.... see "Development"

2x2 Mg & 2x Passiflora & Gastritol & Ω3 at meal 19:00, 600mg GABA & 500mg Glutamine & 250 theanine & 0x Passiflora 20:55.
FCS#1 p1 21:54-
22:58 3’ p1
0:28 5’ p1
1:01 6’ p1 drink Gastritol
2:03 14’ p1, warm/cold shower & HWB, 300mg GABA next, cos of hyper brain, bit cold, bit headachy, nose stuffy (that’s what I always meant when I wrote clotted) despite less GABA, less theanine, 0 magnesium glycinate.
1h10 AuTr rather/doze, so
3:27 37’ +600mg GABA, let’s see. fw’32’
17’ AuTr/doze
4:21 3’ growing stomach pain, so drink + Gastritol + Gastricumeel
1h11 of sleep??
5:35 25’ 6
15’ AuTr + doze
-6:41 = 4h deep, 1h30 light, 30 break 15 light 25 break 15 light.
Sum: 2h06+2h03-(3+5+6)14’= 4h09-14’=3h55, plus up 3x (14’), plus 1h10+17’+1h11+41’ doze/AuTr = 3h09, 3h55+3h09=7h04

ACTIVITIES➔ACHE: None today ;-) ➔ 90%/1 ✅, but then the talk (see Actions) and yesterdays 30' gym workout is 70%/3 ACHE ❌

Cycling 5+5… =’

ACTIONS➔PAINS: Talking (live with a best mate): 90': 70%/3 ACHE ❌ (incl. bladder: p4 ❌). 2h rest needed after, altho I was only standing & exercising a bit, nothing hurt.

Lying, standing, sitting, GI: OK

Treatments

SELF-PHYSIO: 2h21 ✅, fibro-work 4h30 ✅. RR 7:00 119/83 49 '✅ RR 12:35) 148/87 68. ❌ RR 17:45) 139/83 6 ❌ (serotonin? Take GABA down further to 900mg!)

Timing, AuTr 40’, hunchback-pillow 20’, cold shower (2x10’), thumbnails 8x30’’, RR 7x2’, belly 3’, back 7’, twist-stretch 10’, loins 5’, RR 9x2’, = 141=2h21.
palpate 1’, workout 7’, gums 2x30’’, neck 1+ ‘, neck 2 1’, V ‘, yoga ‘, marionette-hang 1’, breath-hold 11’, shaking dance 1’
Fibro-work: Night: 30’ ?4h = h

RR 7:00) 119/83 49, RR 12:35) 148/87 68. RR 17:45) 139/83 63. Monday early and late was and thought that was a symptom of serotonin syndrome.

RR 7:00) 131/81 47 117/89 55 132/87 51 136/80 50 124/84 48 114/82 49 = avg. 126/84 50, end-avg. 119/83 49
RR 12:35) 163/89 70, 151/79 67 157/90 69 irr, ärmel, 140/85 68, 146/84 69, 146/84 69 158/89 71, 148/89 66 avg 151/86 68, end-avg. 148/87 68. I read about it variously, but mayoclinic says it peaks at midday. so let’s take that.
RR 17:45) 134/80 63? 135/84 61 143/79 61 134/81 62, 143/83 67, 144/80 63, 142/85 63, 138/85 59 138 86 66 avg. 139/83 63.

THERAPIES: Acupressure: No improvement sitting or sleep ❌ yet 🧐, but rest good ✅

Acupressure 2h Tues & 2h Fri:

SUPPS: Glycinate ↘↘0, passiflora (↘)2, theanine ↘270, GABA (↘)2x600 ✅ at day, ❌ at night, GI OK ✅

2x400mg Mg malate, 0!x500mg Mg glycinate, 2!x290mg passiflora, 2x600mg GABA, 600mg L-glutamine, 270mg theanine:
(? )

Development

Sleep time & sleep breaks vs. Activity-Ache & supps in relationship, just using short/few sleep break nights, from Apr 10th to July 8th and July 23rd to Aug 1st (GABA overdose). Still working on the results: April wasn't ideal, it was much longer than now. (Live?) Work increased sleep breaks. L-dopa increased sleep need, theanine decreased it at 200mg, more at 400mg, glutamine was too high at 1200mg, GABA too high at 1500/1800mg. Glutamine may have caused the problems I had around and from 10th July on, so try stopping it!

2021-08-01 8h29, up 8x (35’), +12’ doze = 8h41. 90%/1 4Mg 3Pf 1500G 600Glu 400 thea: GABA OVERDOSE.
2021-07-31 5h15, up 2x (10’), +2h06 doze = 7h23 80%/3. 5Mg 3 pf 1200 G 600 glu 400 thea. NO STATIN/EZETIMIBE ANY MORE (but doesn’t seem to make a difference…)
2021-07-30 6h42, up 5x (18’) +1h38’ doze = 8h20 80%/2. 4Mg 3 pf 1200 G 600 glu 400 thea.
2021-07-29 9h19, up 4x (13’+creative) 90-70%/1-2 4Mg 3 pf 1200 G 600 glu 200 thea.
2021-07-28 8h29, up 4x (12’), +13’ doze = 8h42. 70%/2/3 4Mg 3 pf 1200 G 600 glu (200?thea)
2021-07-27 7h25, up 3x (9’), +25’ doze = 8h. 90%/1 4Mg 3 pf 1200 G 600 glu 200 thea
2021-07-26 7h36, up 5x (55’), -23’ doze = 7h13. 90%/1 4Mg 3P 1200G 600glu 250 thea.
2021-07-25 8h44, up 4x (31’), +14’ doze (= 9h) 70%/3 1800GABA+1200glut, GLU OVERDOSE.
2021-07-24 7h52, up 8x (59’), 0 doze 90%/1 1800GABA+1200glut 4Mg 3P
2021-07-23 7h56, up 3x (17’), +1h doze
… GLUTAMIN → WORSE SLEEP except 2021-07-14, -15, -20, seizure 21st, praps trypto + glutamine …What’s good about it, I can’t find anything! Why did I take it?
2021-07-08 10h50sleep/ doze up 4x (27’), supps: 2x MgMal, 2 Pf, 700mg GABA. Speck of glut.
2021-07-05 9h29, up 6x (34’). Cold. 2x Mg malate, 2 passiflora, 700mg GABA
2021-07-03 8h21, up 6x (22’). 2x Mg malate, 2 passiflora, 650mg GABA
2021-07-02 9h48, up 6x (25’). 2-3x Mg malate, 2 passiflora, 750mg GABA
2021-07-01 8h17, up 3x! (18’!). 2+1x Mg malate, 2 passiflora, 750mg GABA
2021-06-26 7h05, up 6x (40’) 4x Mg malate. "
2021-06-25 8h10, up 5x (38’) 0x malate
2021-06-23 9h35, up 4x (25’) “Successful” - but fatigued, no lust 4 work, tired at 13:00 0x malate.
2021-06-16 8h55, up 7x (44’) 1h stints, curbed/creative flash, no ‘reason’ for break freq. GABA +3 passi.
2021-06-14 9h40, up 5x (25’) 85%/2 750mg+300 GABA 2x passi, 0 dopa.
2021-06-09 10h10, up 4x (35’) 80%/1 400+350 GABA 2 passi 0 dopa (100 dopa much worse, esp. LBU)
2021-06-03 8h50, up 5x (30’), 80%-90%/2-1 (despite 6:20!) 400+200+150=750 GABA, 2 passi, 50 dopa
2021-06-02 10h50, up 4x (20’), 90-95%/1 400+200+300 GABA good! 2 passi, 50 dopa
2021-06-01 9h35, up 3x (40’) 80%-70%-60%/1-2, slow foggy, 250 GABA 2 passi, 50 dopa
2021-05-31 10h07, up 3(-4)x 33’. Unrefreshed, 70%/3, 250 GABA, 2 passi, 50 dopa
2021-05-30 10h15, up 3x (35’). dozing. 70%/3 300+150mg GABA + 2 pass, 50 dopa
2021-05-29 10h30, up 3x (20’). 70%/3. 300 GABA + 2 pass + 50 dopa
2021-05-25 8h50, up 4x (25’)** 90%/1 250+150 GABA + Mg? + 50 dopa (reflection) ENERGY
2021-05-23 9h20, up 6x (30’) 90%/1 300+150 GABA + 1!x Mg! + 50 dopa
2021-05-22 8h30, up 2x (10’) 90%/1 300 GABA 2xMg 50 dopa SECOND TIME DOPA (1st: 2h40)
2021-05-20 8h40, up 4x (35’) 50%/4 200+100+100+200 GABA, 2? Mg, 0 dopa
2021-05-19 8h10, up 3x (25’) 90%/1 200+100 GABA worked, 2? Mg.
2021-05-17 9h20, up 5x (35’) 90%/1 GABA+3: Mg, passiflora, tryptophan but extremely tired.
2021-05-16 GABA+3 + 5-HTP awake, days before too.
2021-05-11 9h25, up 5x (35’) 70%/2 for 1h GABA+3 focal seizures: glutamic acid?
2021-05-10 8h55 up 3x (15’) 60%/3 GABA+3
2021-05-05 8h55, up 3x (45’) 90%/1 GABA+3 0p
2021-05-04 9h05, up 3x (40’) 90%/1 GABA+2+1 glutamic acid.
2021-04-29 9h10, up 2x (10’) 90-80%/1 GABA+P+Mg+glut.ic STOPPED LERCANIDIPIN
2021-04-28 9h00, up 2x (30’) 90%/1 GABA+P+Mg+glut.ic much less peeing
2021-04-26 9h15, up 4x (55’) 80%/1 GABA+P+Mg+glut.ic dead tired! BACK TO LIVE WORK after ILL
2021-04-25 9h45, up 3x (15’) 70%/2->80%/1 GABA+P+Mg+glut.ic earlier?
2021-04-23 9h35, 4x up (40’) 90%/1 GABA+P+Mg+glu
2021-04-22 9h30, up 3x (45’) GABA+3
2021-04-21 9h45, up 3x (50’) 90%/1 (70%/2) GABA+3
2021-04-20 10h20, up 4x (25’) 90%/1 → 70%/2 GABA+3 SFX!
2021-04-19 10h00, up 3x (15’) 80% /2? SFX!
2021-04-18 8h15, up 4x (50’) 80 % / 2 GABA #4
2021-04-17 9h35, up 3x (15’) GABA#3 2xglutamic acid, 2xpassiflora
2021-04-16 8h50, up 4x (40’) 80% / 2 GABA#2 + 2 glutac +2 passi
2021-04-15 9h05, up 8x (?) 70% / 2 GABA#1 + 2 glutac +2 passi
2021-04-14 10h05, up 4x (?) 40-50 % / 4-6 GABA#0

1. Apr 14th <60’ was 88%, but LONG 9-10h: 750 GABA+ 2 Mg + 2 passi + 2 glutamic.14/16d.
2. Apr 30th to July 8th <60’ was 38% 27/70d probably due to LIVE WORK and GABA down.
3. Also: May LONG due to L-DOPA, GABA down till June 1st.
4. Theanine, starting 200mg means SHORT sleep. 400mg even LESS, despite more 3 or less 2/0 Mg + P.
5. If theanine decreases sleep, then another try with glutamic acid could recreate mid-April, but might increase the risk of focal seizures. What is glutamine doing anyway?
   Apr 8th + 10th seizures
   OK, I need at least 750 GABA & this rough formula is nec to keep my days good - stiffness, TT, pee pain down.

Also…
A while ago I asked: Which of my current meds has a well-known side effect of tiredness? Of these I first stopped Lercanidipin end of June (but increasing Candesartan; then after good blood pressure that as well, so checking regularly), then stopped Atorvastatin and Ezetimibe on July 31st, Is that a reason for being less tired, needing less sleep? I am still taking selene for thyroid, tiredness is reduced? by roseroot, above it says it can make you sleepy…

Lessons in self-care #50 Feel needy, so doing what I want.
Reasons to be cheerful #47 Jaw is almost gone apart from social stress a bit…

Highlights week 25th to 1st.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[JayCS]

Hi Freedom: Thanks very much for this info on recent PTSD therapies! Haven’t been able to find a German equivalent. Definitely might be something for someone I know where normal trauma therapy triggered / re-traumatizing too much, making the problems worse rather than better. So very much sense. I imagine the “flash” meaning you only flash up the old pictures quickly. I’d be curious tho how the effect on the body and the mind can be controlled. I know that a backflash like that can sometimes take me over quite a bit. Also why ‘grace’… praps that is a form of “control” that comes in to help. I’d guess that the grace aspect can have to do with forgiveness, altho that can be almost impossible. And maybe a personal and a faith aspect too?

[JayCS]

2021-08-05, Friday - interesting sleep with 3h break, but otherwise long & deep without glutamine/glycinate

Triggers & resulting Symptoms

SLEEP: 3h16 & 5h53, up 4x (25'), plus a 3h03 stress break, plus doze 20' = 9h29 ➜ Feeling 90% well, Ache 1 of 7 ✅ - not counting the 3h03 as a break. This leaving off glutamine has helped me so much to determine what's what. Next I'll see what it's like without such a big break and then praps add glutamine again to reduce the sleep amount & drowsiness. But it's so helpful to nice just be able to SLEEP! BUT hard to get going again... so I do need some antagonist, whether glutamine or taurine or whatever. My wife suggested not going to the laptop at night but instead walking round the block or flat or reading, like she does. I'll try it.

1x2 Mg malate (not glycinate) & 2x Passiflora & Gastritol & Ω3 at meal 19:30, 600mg GABA & 0mg Glutamine & 1x Passiflora 21:30.
FCS#1 teeth 21:45-
0:02 9’ p0 Marigold. HWB3’. fw4’ drink Gastricumeel.
dozing a bit (cleaning for cryo)
0:43 4’ mail → palpitations 8’ (praps add: to save me time/stress)
0:55 9’ FCS
1:21 ‘time/energy/stress-problem’ keeping me from calming down. fw3h?
4:24-
7:48 3’ p0 fw2’
-10:20
Sum: 2h15+1h21-(9+4+9=)‘22= 3h36-22’=3h14 minus 20’ doze and 10h20-4h24-(3=)3’= 5h56-3’=5h53 plus up 1x (3’), together 3h16 & 5h53, up 4x (25’), (plus 3h03 break), plus doze=20’ = 9h29

ACTIVITIES➔ACHE: Cycling 20', housework 40' ➔ 70%/3-2 ✅

Cycling 5+5… =’

ACTIONS➔PAINS: Sitting: As my acupressurist suggested 'too high' seats are better for me, as then less buttock area is on the seat. That's also why I often 'lie' straights on seats. Bladder: depended/s a bit on Ache and pressure. ✅

Lying, standing, Talking: GI:

Treatments

SELF-PHYSIO: 62' ✅, fibro-work 6h'

Timing, AuTr 10’, hunchback-pillow 20’, cold shower (10’), palpate 1’, belly 3’, back 7’, HWB 3’, Yoga Nidra 9’ twist-stretch 2’, = 62’
workout 7’, gums 2x30’’, thumbnails 10x30’’, neck 1+ ‘, neck 2 1’, V ‘, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’
Fibro-work: Night: 3h+3h? = h

A nice Yoga Nidra video: Regular different sound singing bowls, female US voice: “space around body” too, faith touch: “love itself”, “desire”, “pure awareness” “offer blessing … for everybody/-thing”, “express gratitude”, “all the blessings” “end with a smile”.

THERAPIES: Acupressure / Therapy, Doc/Diagnoses ? ✅ ❌ 🧐

Acupressure 2h Tues & 2h Fri:

SUPPS: Now I've got more of a handle on what's going again ✅. Without glutamine & Mg glycinate last night was totally different, nice n sleepy & short breaks, except the one; but not the daytime. First I've got to see that I don't have such a long break, altho I cdnt do anything about it. But then I need to get the balance back towards feeling awake in the mornings and not having to sleep too much, apparently either glutamine or glycinate or both was doing that and I'd left them out tonight, whilst I didn't catch what the theanine was doing, I thought that was getting me awake. GI good, altho I'm only eating 2 meals a day at the mo ✅ (?↗ ↘)

2x400mg Mg malate, 2+1x290mg passiflora,
600+300mg GABA, 280mg theanine
0mg L-glutamine, 0x500mg Mg glycinate, :

Development

Lessons in self-care #51 Even meeting one of my best mates for 80’ “hurts”.
Reasons to be cheerful #48 Socializing usually means not telling people that it’s hurting to talk to them…

Highlights week 25th to 1st.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[JayCS]

2021-08-07, Saturday - still recovering from supp changes and 25’ gym workout

Triggers & resulting Symptoms

SLEEP: 7h20, up 4x (33'), 24' doze, 1h54, up 1x (3') = 10h02 ↔️ Feeling 70% well, Ache 3 of 7 ✅ - OK, wasn't a fluke, even +300mg glutamine + 1 Mg glycinate isn't decreasing the ache and sleep time much, so increase them

1+2x2 Mg & 2x Passiflora & Gastritol & Ω3 at meal 19:45, ! 900mg GABA & 0mg Glutamine & 2x Passiflora 21:15.
21:47-
21:55 5’ FCS#1
0:43 8’ p1 drink Gastritol fw5’
2:10 16’ p1 drink Gastritol +300mg Glutamine fw10’ (silly)
awake 2x without having to get up
4:09 4’ p0 drink teeth
dream about a nice - not pretty - female doc, dining with her, me trying to pay, but her disappearing whilst I was chatting with someone else, her having apparently paid…
-5:40
-6:32 50’fw, drink. Shdve tried reading.
doze
6:56 5’fw
7:01 reading (HÄGAR comic) instead of fw is dead boring, physically hard to read, I need to turn my computer light high instead of the lowest when I’m doing fw and my pain perception has now grown high making going to sleep harder.
7:11 30’ 6. drink -7:41
8:37 3’ p0-1? (sort of started hurting, put stopped again…)
= +56
9:07- 3’ p0 =
-10:08 +58
p0 th drink Gastritol fw1’ FCS#2? +600mg capsule GABA?*
Sum: 2h13+5h40-(5+8+16+4+=)33’= 7h53-33’=7h20, up 4x (33’), 24’ doze, 1h54, up 1x (3’) = 10h02

ACTIVITIES➔ACHE: 'early' hot/cold shower ➔ ?80%/2 ❌ Socializing "5h" 70%/3 ❌, but retired consequently every half hour, altho we were visiting, so wasn't worse.✅

Cycling 5+5… =’

ACTIONS➔PAINS: Sore loin muscles from Wednesday's workout since esp. yesterday. Altogether not good. ❌ Sitting: better now my acupressurist made it clear to me I need to sit on higher chairs so that less of my seat is on the seat... Bladder 0-1 ✅ , talking quite a bit, but often just grunting or making signs ✅

Lying, standing, sitting, Talking: GI: Bladder:

Treatments

SELF-PHYSIO: 68' ✅, fibro-work ?4h

Timing, AuTr 10’, hunchback-pillow 10’, cold shower (10’), palpate 1’, belly 3’, back 7’, workout 7’, twist-stretch 20’.
gums 2x30’’, thumbnails 10x30’’, neck 1+ ‘, neck 2 1’, V ‘, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, RR x2’, HWB 3’
Fibro-work: Night: 1h10 +2h +1? = h

THERAPIES: Acupressure no good effect yet, despite her going easy this time ❌

Acupressure 2h Tues & 2h Fri:

SUPPS: ✅, GI 900mg GABA in one go by mistake, but OK ✅ (?↗ ↘)

2x400mg Mg malate, 1x500mg Mg glycinate, 2x290mg passiflora, 600+300mg GABA, 200mg theanine, 0mg L-glutamine:

Development

Lessons in self-care #52 Altho we were visiting I made sure to do almost exactly what I needed, went into another room, put headphones on, twist-stretched and lay down a lot.

After reading about “pain tracking” on another resource/forum site, I’ve just for the first time read this regarding nausea in fibromyalgia here: “Situations such as this underscore the importance for diligent and dedicated tracking of all symptoms and treatments.” Which I spose is what I’m doing & showing here in this blog.

Highlights week 25th to 1st.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[JayCS]

Lowlights of the week, and some highlights too - Aug 1st to 8th - supp overdoses…

Emojis of the week:

1. Me self-disciplined?! : Been breakfasting at noon “cos of fibro-work” the last 2 weeks…
2. Supps: All changes seemed bad, so gentler changes or new ones.
3. Back down to 600+300 GABA after prob’ly a ?week of serotonin syndrome (e.g. 1800mg).
4. That might’ve increased bp & pulse, so lower for a while till they’re back down.
5. Glutamine (does it help?) & theanine & glycinate (bad nights upon starting it) down but there too.
6. Supp decrease Fri+Sat was better, so they had reduced sleep length, not the blood fat meds.
7. Bladder pain is down a bit again.
8. New “next up” category here on the most recent day, instead of in this weekly digest.
9. Despite energy, Activities were pretty bad, cdnt manage much, maybe from GABA overdose.
10. Even acupressure (backside & neck/shoulders) caused Ache this week too.
11. Cryotherapy alone (Sat.) doesn’t do more for me than cold showering, but definitely had its day.
12. Symptoms: Best get back out of panicky mode after the GABA overdose.
13. Sleep was not improved by the work break : its the supps balance.
14. Sleep shorter, apparently effective, getting up instead of dozing, to get supps in balance.
15. I’ll try alternatives to fw like reading when awake at night, but if AuTr doesn’t help…
16. Often cold at night, nose stuffy, headache: window open long or supps?
17. GI: Still good.
18. Stiffness back up a bit (GABA overdose).
19. Energy still high, incl. no breakdowns - so all was not lost, but knackered a lot in between.
20. Gym increased Ache , but stopped right loin!
21. Sitting: All higher chairs seem better. Floor sitting & chair slouching distributes pressure too.
22. Jaw’s now only slight if at all but changed a bit & sometimes right too.
23. Bladder pain down more again , after increased Ache had made it a bit worse.
24. Checked RR more. Increased a bit, often takes 10’ to get down to 130/85.
25. Integrating further Yoga Nidra techniques regularly into my AuTr.
26. Bit too much socializing this week, considering, but very well paced Sat 7th.
27. More on forums & adding to the references. fw is rest for my body, purpose for my soul…
28. My blog = “Diligent and dedicated tracking of all symptoms and treatments” see here.

[JayCS]

2021-08-08, Sunday - supps in better balance day & night, & workout ache gone

Triggers & resulting Symptoms

SLEEP: 9h03 + up 5x (47') + 0 doze ↔️ Feeling ?90% well, Ache ?1 of 7 ✅ - excellent balance of solely deep sleep, sleep amount, short enough breaks, awake, no GI, bladder good.

Tried 4 sips of klip dagga tea at 21:00 (cannabis-like wild plant), which made me feel pretty awake rather than calmed, but an FCS did the trick.
1+2x2 Mg & 2x Passiflora late, together with 600mg GABA & 400mg Glutamine & Passiflora 22:45.
FCS#1 23:10-
0:36 11’ p1, bowel movement unexpected, but good, fw6’ +200mg capsule GABA
2:25 20’ the same. fw 18’
5:00 7’ p1 drink fw5’
6:17 5’ p0 drink fw3’ dreams with mates, train to Moscow that has to take under 30’ to get to work, mate in a sort of life guard station making power cuts, off on a boat as a night watch for the ocean… realizing I’m going to deep sleep, so back to my wife… just before waking…
FEELING GREAT, PERFECT COMBINATION? Deep sleep, tired, but not zombified, and not stiff!
7:34 4’ p0 (despite large amount) drink - no GI problems despite no Gastritol (empty) drink.
-9:00 fw10’ Gradually aching a bit, so lying down once more (or FCS next).
Sum: 0h50+9h-(10+20+7+5+4=)47’=9h50-47’=9h03 + up 5x (47’) + 0 doze.

ACTIVITIES➔ACHE: Doing 'nothing' - as far as I can do that ;-), i.e. mainly resting/fw ➔ ?90%/1 ✅

Cycling 5+5… =’

ACTIONS➔PAINS: Lying in bed I've now pretty much developed 6 positions: ONE I start each stint off with a cushion under my hunchback, shoulders and head back. TWO recovery position to one side, THREE plus upper leg backwards, sometimes arched like in six. FOUR+FIVE: other side. SIX: Stretching/arching legs/back/head backwards to various degrees, but at a large angle only <5', otherwise it hurts my knees, good for lower back unrest tho. Often have to get hair out of face and scratch my face and lower back and front too, and cold showering to get to sleep quicker has become normal. Sitting good on other high chairs. Slouching and floor sitting spreads the pressure. Bladder 0-1 ✅

Lying, standing, sitting, Talking: GI: Bladder:

Treatments

SELF-PHYSIO: 75' ✅, fibro-work ', RR at 9:30 down from 146/90 (amove) to 132/83 50

Timing, AuTr 10’, hunchback-pillow 15’, cold shower (10’), RR 6x2’+ 10x2’+4x2’.
palpate 1’, belly 3’, back 7’, workout 7’, twist-stretch 2’, gums 2x30’’, thumbnails 10x30’’, neck 1+ ‘, neck 2 1’, V ‘, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, HWB 3’
Fibro-work: Night: 37’. = h

RR: Higher when pee urge, bit lower, but higher pulse thru deep breathing, lower after drinking & eating, taking double rosewort/rosalea now.
11:30 around 140/88 (need to pee, drink & eat!) 15:10 134/75 71 is all OK.

THERAPIES: My acupressurist's idea it's high chairs was very helpful. ✅

Acupressure 2h Tues & 2h Fri:

SUPPS: Great sleep with GABA & theanine,↘, glutamine ↗ ✅, GI ✅, but 2 light focal seizures Saturday evening might indicate more GABA? Or just part of the recovery from the serotonin syndrome?

(? ) 2x400mg Mg malate, 1x500mg Mg glycinate, 2x290mg passiflora, 600+200mg GABA, 300mg L-glutamine, 200mg theanine:

Development

Lessons in self-care #53 Rested a lot and cut socializing short, my poor wife…
Reasons to be cheerful #49 Funny/strange how I was seemingly (to myself) faking it/exaggerating yesterday, to seemingly pace so well. (Remember how! :-))
Reasons to be cheerful #50 Night in great balance without GI, despite long socializing.

Lowlights week 1st to 8th.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[JayCS]

2021-08-09, Monday - thought I could get away with it…

Triggers & resulting Symptoms

SLEEP: 7h29, plus up 7x (1h38'), plus 33 doze = 8h02 ↔️ Feeling 70% well, Ache 3 of 7 ❌ - "thought" (no I didn't think) I could get away with a bit less sleep, but at 11:00 I'm still achy. Real sleep up to 4:27, then 6:09-7:50. Itdve helped if Idve FCSed before, and had had to get up less often, so improve drinking & praps a bit more supps.

1+2x2 Mg & 2x Passiflora & Ω3 at meal 20:00, 600mg GABA & 400 Glutamine & 200 theanine 21:40.
22:22-
23:06 8’ p1 FCS#1 drink
23:19 3’ p1
0:06 12’ p3 fw10’
1:56 6’ p3, bit of a hot flash, still sore throat → Marigold. fw1’ drink + 300mg GABA
3:01 12’ p2, drink teeth fw10’
4:27 39’ unnec! p1 drink fw36’ (had to get top out, as cold) p0 (no urge)
5:06-5:39 AuTr/doze.
5:39-47 6. 18’;
5:57-6:09 20’fw. grrr
-7:50 p1 fw3h10
-end
Sum: 1h38+7h50-(8+3+12+6+12+39+18+20=)1h58’= 9h29-1h58=7h29, plus up 7x (1h38’), plus 33 doze = 8h02.

At last: table tennis again (mate’s back after 2 weeks)

ACTIVITIES➔ACHE: Resting/fw slowly ➔ ?90%/1 ✅ cleaning the fridge ➔ ?90%/1 ✅ TT (easy) ➔ 90%/2, resting again, but going into tired mode with feverishness (25' shops & cycling) ➔ 80%/2

Cycling 5+5… =’

ACTIONS➔PAINS: Bladder: Not that good at night, frequency neither, need more drink discipline. GI: Run out of Gastritol, but it isn't nec. praps due to less acid-supps ✅ Talking: phoning son which'd I'd been putting off was good ✅

Lying, standing, sitting,

Treatments

SELF-PHYSIO: 87' ✅, fibro-work 8h16, too much at night ❌ RR 126/75 65 after TT ✅✅

Timing, AuTr 20’, hunchback-pillow 20’, cold shower 2x(10’), palpate 1’, belly 3’, back 7’, RR 8x2’, .
workout 7’, twist-stretch 2’, gums 2x30’’, thumbnails 10x30’’, neck 1+ ‘, neck 2 1’, V ‘, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, HWB 3’
Fibro-work: Night:1h16 + 3h10 +2h? +2h
17:30 RR 124/75 63 134/81 66 131/84 66 137/79 67 130/74 63 125/75 66 132/75 65 122/74 65 after TT

THERAPIES: ...

Acupressure / Therapy, Doc/Diagnoses ? Acupressure 2h Tues & 2h Fri:

SUPPS: GABA 900 etc. slightly ↗ didn't seem quite enough ✅, GI good even without Gastritol ✅

2x400mg Mg malate, 1x500mg Mg glycinate, 2x290mg passiflora
600+300mg GABA, 400mg L-glutamine, 200mg theanine:

Development

Lessons in self-care #52 I wasn’t self-disciplined, but I’m not bashing me up for it.
Reasons to be cheerful #49 Have I mentioned we can play TT again?

Lowlights week 1st to 8th.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
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[ModSupport]

Symptom Tracking/patient journal is a critical part of a current project on slef advocacy. Thanks for the link

TJ

[JayCS]

2021-08-10, Tuesday - deep sleep, but yucky at 6:22: monitor every break %. Back & neck mobilization by my acupressurist has brought me back on par again.

Triggers & resulting Symptoms

SLEEP: 10h15-38'=9h37, + up 6x (38') (-16' doze = 9h21) ↔️ Feeling 80% well, Ache 2 of 7❌/ ✅

1+2x2 Mg & 2x Passiflora & Ω3 at meal 20:05, 600mg GABA & 350 Glutamine & 200 theanine 21:45.
FCS#1
21:50-
23:42 3’ p0 drink1
1:20 13’ p2 drink1 Gastritol fw3’ 300mg capsule GABA
2:57 5’ p2 drink1 fw1’ stuffy nose / bit cold / → HWB & top
5:53 3’
6:22 5’ after intense dreaming, but feeling incredibly yucky, like cold/flu Ache, so trying electric blanket, quite OK. Seems as if this might be the case every time I wake up at night, but praps worse the deeper I sleep. My sleep positions ONE for hunchback and SIX for lower back unrest/pain (see above) are stretches that also cause a pain, I think, but a better pain than the unrest and discomfort I feel. I shd write down %/x in every break from now on. Might explain the length of breaks.
6:44-7:03 9’ Overheated from electric blanket, so try FCS#2? - tired, not sure if that’ll stop sleep or help. So cold washed all 4 limbs. Next try might be cold showering just the limbs, not the torso. RR?
Around 135/80.
?+3+4+5+6
p0 th drink Gastritol fw1’ teeth
-8:05
Sum: 2h10+8h05-(3+13+5+3+5+9=)38’= 10h15-38’=9h37, + up 6x (38’) (-16’ doze = 9h21)

In sleep break at 6:22 after intense sleep: 40%/4 , is that why I often like prolonging/doing things? Yucky, like cold/flu Ache, electric blanket helped a little, but then I soon overheated, so cold washed limbs. Seems as if this might be the case every time I wake up at night, but praps worse the deeper I sleep. I shd write down %/x in every break from now on. But WHY does it come up?
My sleep positions ONE for hunchback and SIX for lower back unrest/pain (see above) are stretches that also cause a certain kind of sharp, but not too strong, pain, I think, but a better pain than the unrest and discomfort I feel otherwise, which helps me get to sleep.
Since my stint of short sleep a few weeks ago (theanine?) I’m not sure about giving sleep of over 8:30 a full . For the time being yes, until I’ve got back to roughly where I was before the 2 overdoses, praps before the short sleep times, or better…

ACTIVITIES➔ACHE: cycling/angiologist ➔ 80%/2 ✅, 45' house- and yardwork ➔ 70%/3 ❌, rest/fw➔80%/2, TT #1 easy ✅acupressure➔90%➔80%/1 ✅, TT #2 easy ✅

Cycling 5+5… =’. TT #1 5:1, #2 3:1.

ACTIONS➔PAINS: sitting on floor 3, on chairs (high or straight) 1, it's more the Ache of about 3 tho ✅

Lying, standing 2, sitting 3 Talking: 0 GI: 0 Bladder: 0-1

Pics similar to how I now deliberately sit, with much less pain, so without having a bad conscience about it, just have to make sure my hunchback doesn’t suffer too much.

Chairs have to be padded tho, not too hard, not too soft.

Bar stools again have to be padded similarly, but also swiveable and height adjustable.

Treatments

SELF-PHYSIO: 96' ✅, fibro-work ?3h ✅, RR high at angiologist's, excellent at 10:23 & 16:24 ✅

* Timing, AuTr 10’, hunchback-pillow 20’, cold shower 2x(10’), HWB 3’ palpate 1’, belly 3’, back 7’, RR 16x2’, .
workout 7’, twist-stretch 2’, gums 2x30’’, thumbnails 10x30’’, neck 1+ ‘, neck 2 1’, V ‘, yoga ‘, loins 1’, marionette-hang 1’, breath-hold 11’, shaking dance 1’, *
Fibro-work: Night: 5’ + 10:20-11:20 +2?
RR at the angiologist’s: 170/90 79.
RR 10:23 directly after 45’ yard- & housework & despite fairly uptempo electropop 144/75 72 141/75 70 132/79 70 138/76 69 124/74 66 121/69 66 130/71 72 132/74 69 125/81 70 130/68 68 excellent!
16:24 RR (moved and music) 139/86 83 irr 137/85 73 130/80 70 128/81 70 130/81 67 132/83 71

THERAPIES: Doc/Diagnoses: Angiologist/cardiologist: bp is good without meds ✅. Heart is good ✅. Blood fats allow decreasing of meds ✅, she like the GP says: halve ✅/❌. Details inside... Acupressure back and neck was brilliant for all of me ➞ 90%/1

Angiologist/cardiologist sez it’s fine to leave the bp meds if it had gone down to often 110 and is usually now <130, even 135’d be OK. Pulse of <55 is also fine if I don’t feel dizzy, which I don’t. She looked at my heart and said the septum is only slightly enlarged, which also favours that the bp is good. She also agreed with my GP to decrease the lipid-lowering drugs as my LDL and triglycerides are so low due to the strict Mediterranean diet. Like him she fears that stopping them altogether might not be enough, seeing as my lipoprotein a is so high. I’m now undecided whether to continue leaving both, or just take Ezetimibe, altho less preferred than statins. Sfx: mainly tiredness, diarrhea and pain in the joints, but also pain in chest, neck, back, GI, dry mouth, GERD, skin itchiness, high bp, muscle weakness, cramps, harming muscle cells, weakness - what the $X§%? ?! NO! Monitoring of bp and blood fats every 3 months, so end of Oct.
/ Therapy, ? Acupressure 2h Tues & 2h Fri:

BTW searching for Mediterranean diet, as my wife was worried I’m not eating enough different things I found that in Europe they also talk about a Nordic diet, comes from Finnland, but in a table of differences it is pretty similar and partly more like what I eat than the Mediterranean, e.g. I have much more canola and linseed oil than olive oil. More cabbage, other wholemeal grains than wheat (me spelt), yoghurt & skyr rather than cheese. So I must say what the cardiologists told me is Mediterranean is actually Nordic!

SUPPS: Forgotten to increase. Long deep sleep ✅, but not that good in breaks and at daytime ❌. GI ✅

2x400mg Mg malate, 1x500mg Mg glycinate, 2x290mg passiflora, 600+300mg GABA, 350mg L-glutamine, 200mg theanine: Increase, changed the amounts before sleep for tomorrow now…

Development

My wife was worrying and tearful today how bad I’m feeling at the mo, I think esp. cos of the really long socializing on Saturday, where I went aside to rest every half an hour for half an hour, and she said she wished I’d consider further treatment possibilities, like some kind of rehab or a clinic again. Many of you/us have people who don’t care enough, in her case she sometimes cares too much… I reminded her of my development, how I’m able to play much more & better table tennis now, how bad the clinic was for me, how well I had been doing on GABA since April till the overdoses spoilt the last 2 weeks. She grunted that I always give words back, as if I weren’t listening to her, but I think she started to realize at least a little bit that she was catastrofyzing. Then she asked what I’d think & feel if I was in her position, and I retorted that I am, she said but she didn’t have so much physical problems, and I just looked at her and grinned, she said don’t say anything wrong now, I grinned and said, well mental can be even worse… (and I could have hinted at 2 physical psychosomatic things of hers, but didn’t because that’d’ve been a killer argument/discussion stopper, or rather cos it’dve hurt her too much, under the belt.) After that her reaction was: Right, change topic, no talking about health any more… I also said I’m not letting me get anything in the way of my optimism, and I am doing a helluvalot which is helping, no need to suggest docs that haven’t ever helped…

Lessons in self-care #53 Lipid-lowerers disputed, but not enough good reasons considering the sfx!
Reasons to be cheerful #50: Heart good, leaving off bp meds agreed upon.
Reasons to be cheerful #51: Either my bp always was ‘white coat’ or my Ache doesn’t increase it, only the pains.

Lowlights week 1st to 8th.

Abbreviations & explanations

Entries start with night meds & sleep, before triggers/symptoms & 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.

SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.

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
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:

↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮:

[rosebud74]

@JayCS
Hi Jay CS in your blog you mention about using an electric blanket. I have an electric mattres cover apart from having a heatwave I use this most nights. If I have had to get up several times in the night, also in a lot of pain I find the electric mattress cover is the one thing that relaxes me and often will also ease the pain. This is enough to get me back to sleep. I also suffer from raynaud’s and having this extra warmth really helps. Even with using an electric mattress cover I can still wake up with ice cold feet which becomes very painful to walk.

[JayCS]

Hi rosebud Lovely of you to take share your experience.
Is it easy to turn on and off? Or ideal’d be a body temperature sensor, as I also get hot flashes?
Or even better one that can cool me off as well - but not my FEET
BTW do you wear as many socks as me, too? (3 cotton socks, + at night 1 woolen).

I do actually prefer a hot water bottle HWB for everything (often at the mo).
On my feet or between my knees/thighs, this exception didn’t work well - I had to cold shower.

On my treatment list I see an electric mattress pad, I spose that’s smaller than a topper? In any case I’ll add it, as well as my electric blanket, thank you for that, too!