JayCS’s Fibro Blog

[JayCS]

2021-03-28, Sunday

Sleep: (1 drop of CBD oil at 20:00) 21:40- 0:35p10’ nose slightly closed (CBD oil) 4:10p20’ hungry. 6:45p10’ 8:45 hot water bottle instead of added blanket worked - probably hypothermia due to the sleep effect of the CBD oil (as I’ve read of melatonin too; I was feeling cold, but the added blankets didn’t help, but I’d also left the heating on a bit, may have dried the air) -9:10 (time change corrected). 11h30-45= 10h45, 4x
Nap: 0
Work: 0
Activities: Tidying up paper stuff quite a bit, very stiff. Table tennis 4:2, Ache.
Feeling well: 70% at night, and still OK-ish, stiff, tired, so 70%. 17:15 20% cos of Ache after table tennis. → rest. But 18:30 back up to 70%
Treatment: 1 drop of CBD oil for the 5th? time. Still keep reading up on melatonin, if I shd take it again, but for a while longer before making my mind up. Read up on D-Ribose and LDN again, but there is just too little evidence for these. HBO hyperbaric oxygen therapy is something new I’ve been reading of, there are quite a few pubmed articles on it, incl. this positive meta-study/summary from 2020:

Hyperbaric oxygen therapy in fibromyalgia and the diseases involving the...

This from 2019

Hyperbaric oxygen treatment of fibromyalgia: a prospective observational...

and this old one from Tel Aviv 2004:

A new treatment modality for fibromyalgia syndrome: hyperbaric oxygen therapy...

Places in Germany I’ve found which offer this are
Zentrum für Hyperbare Sauerstofftherapie & 3 places in the area of Freiburg, Karlsruhe, Heidelberg https://www.hbo2.de/
Pain: No mouth guard: ‘Tooth’ at night 3x, 10x in the daytime. Ache 6 of 7 after table tennis, but down to 1/2 soon after.
Gut: Hunger at night from CBD oil was OK after drinking soy milk. Wind, I think after mouth guard during table tennis.
Diagnoses: My left leg has often been having that warm nerve feeling of late, 4x today.
Development:

[JayCS]

2021-03-29, Monday

Sleep: 1 drop of CBD oil at 20:15. 22:05- 23:30p.u.tooth mouth guard out again due to more tooth ache. 1:50p15’ sore throat → Marigold essence, for tooth too. 4:00 p, sore throat, nose → hot water bottle. 6:35p better, but → also warmer clothes. Feel less numbed by the CBD oil than when I woke up before. Left nostril has been hurting outside → Marigold. 8:10p55’ better tooth without guard . Still fairly numb, not awake, despite coming up to 10h, have to remember warmer clothes, better then, Marigold on left nostril better , but still need more. 9h55-30= 9h25.
Nap: 0
Work: 0
Activities: Table tennis 7:1, fast cycling, Worked thru my private mails indoors and on the balcony at last.
Feeling well: 22:00- 70%, 15:00 80%, 17:00 sitting/lying on balcony in sun & wind 40%, pain up to 5, but nice all the same, pain back down after 30 mins indoors. WIND IS A PAIN - anyone else like that?
Treatment: Took even more supps yesterday, glutamin and my wife gave me a 5mg-B12-injection. Just to see if anything gets me up again. Acupressure: ear, stomach, chest. Felt great directly after, incl. after table tennis, but no longer after balcony.
Pain: 1-2 most of the day, but up after balcony.
Gut: 18:00 diarrhea - despite not using mouth guard nor xylit powder. From treatment, with stomach palpation?
Development:

New JAMA-articles on fibromyalgia:
In reply to a meta-analysis published Oct20 (224 trials, almost 30.000 patients)

Association of Therapies With Pain and Quality of Life in Patients With...

this comment and response were published Mar21:

Treatment of Fibromyalgia in the 21st Century

Treatment of Fibromyalgia in the 21st Century—Reply

Correct me, but the gist seems to me to be that

1. meta-analysis of studies shows that there is small hard evidence that only CBT as well as antidepressants and central nervous system depressants may help a bit,
2. whilst “stepped care”, a combination of things incl. meds (e.g. duloxetine plus pregabalin) do clinically seem more effective than single meds,
3. but the meta-analytical research does not show this effectiveness.
   Also “interesting” that a comment under 1 by an MD from the Univ. of Utah insinuates that there is no real medical evidence that fibro is more than just ““pain” accompanying depression”! Would it be prejudiced to assume that this university is generally “old-fashioned”?

[JayCS]

2021-03-30, Tuesday

Sleep: CBD oil at 20:20, tomorrow at 18:00 PLEASE! 21:45- (dead tired now, wasn’t at 21:00) 0:10p35’ (I cd delay getting up a bit until it got more necessary, warm enough due to long sleeve top on plus one blanket more, so no nose, no sore throat, almost no tooth up to now). 1:05i50’ was up too long, shdn’t’ve tried continued working private mails off quick. So trying housework first, folding clothes. Well no, that’s more stress than anything. Keeping lights off doing it was OK tho. So do some releasing instead. 2:35i5’ Just for the record. I haven’t been sleeping the last half hour, I’m only dozing. I’ve cut up my night by lack of self-discipline. Using the CBD oil, whether staying with 1 drop or going up to 2, I shd be going for almost no interruptions of night sleep. Maybe I shd think about closing up all distraction-possibilities at night again. Maybe this night serves me right and serves to get me more self-disciplined, seeing as the last nights were good. Maybe I shd not count dozing any more, maybe that gives me a false sense of it’s OK, when it isn’t. 2:55 continuing this, watching what’s happening, not going to cold shower. Sh’d manage to get back to sleep from 4 on and probably be tired all day, cos I won’t be able to sleep in the morning longer than about 8 or 9. But my heart’s/pulse’s thumping the whole time, which reminds me to check my blood pressure, like my acupressurist asked. 3:00 128/88 54. So low pulse count, but much too high blood pressure for night, probably continually as well. That’s what’s making the pulse/hurt thump. OK, back to bed… 5:50p, OK, now quite a bit longer, as expected. Did feel like dozing, but probably quite a bit of sleep. BTW been feeling hot, had to take off the top and blanket early on. Hungry, hope soy milk is enough, shd be. H (8:35 Suddenly this page just refreshed while writing, lost a part of the draft again. Try to recap…:) Maybe I shd get my night distractions down, this night shd serve me right, e.g. close mail-tabs at 18:00 and filter more mails off into files, so I don’t have the urge to get them out of my entry immediately. 8:00(p) dozing -8:30 dead tired, keep it short and keep dozing?
10h45-1h45(-1h40)= 9h (7h20)
Nap: Tired, but not quite enough. 18:00 Can’t wait for bedtime 19:00 CBD oil 1 drop.
Work: Shd do a bit. Didn’t. Ha!
Activities: Hair dressers OK. Table tennis 6:0, felt great in warm weather at last, but cdn’t’ve lasted much longer.
Feeling well: Despite not sleeping: 70% most of the time, 80% at the start of warm weather, but felt slightly nauseous when in the sun too long.
Treatment:
Just looking up if myofascial release exercises are something I haven’t done up to now, but it turns out my quick twist-stretches are, here’s a nice overview. I do everything as soon as pain comes up, but especially 20/21 and 25 as there’s something chronic in my legs:

Twist-stretching feels so good, ‘enlightening’, today.
Pain: At night 2, day too. Only a slight bit of tooth ache once in a while, despite eating normally including chewing gum and no more mouth guard.
Gut: Good, despite the diarrhea once in the evening.

[JayCS]

2021-03-31, Wednesday

Sleep: 19:00 CBD oil. Closed all mail tabs too, no more contacting tonight! 20:40- 22:40p10’ 1:50p 5:05p55’ (bit awake in between, sort of ‘bored’ & unwell) 8:25 11h45-1h10= 10h35 Didn’t feel like getting up, instead watched some videos done by friends and “teared” a bit during one about life in polar nights - just something else… don’t do that often… completely off-topic… well, perhaps not emotionally…

Living with the Dark Winters in Sweden | Midnight sun & Polar night

OK, started writing and sort of getting out of bed now, at 10:45
Nap: 0
Work: 20 mins.
Activities: Table tennis 5:1, physically OK, but emotionally it was enough… Grandchild, but took it very easy, very slowly there, didn’t jump around much, very slowly back, a bit late, but OK.
Feeling well: 20:00- 40% After cold showering, cycling & doc 50/60%, table tennis 70%, grandchild 50%.
Treatment: Just asked a trauma-psychologist I once went to about 7 years ago, who’d agreed I’d worked thru my trauma well, for a few new appointments, as she had suggested she might be able to help me a bit with further life hacks.
Asked/reminded my scatter-brained GP if he’d done a referral to endocrinology at a university clinic near here. He found that it’d gone wrong, I need to go somewhere else ‘first’. But my first practice is no longer an option, so I’m looking around in the vicinity, found 1 hospital fairly near me, 2 docs quite a distance away.
Pain: 20:00- 4/5. Lack of feeling good / appetite / wanting to ‘live’, e.g. be up, depressive touch. Needing distraction. 2:00 something indefinite wrong with my tooth.
Gut: good. Evening meal a bit later, 19:30…
Development: Got the paper deciding disability pay today, I cd file a complaint, but it’s all OK, like it was discussed.

[JayCS]

2021-04-01, Thursday

Sleep: 1x CBD 19:40, 21:15- 22:50p 1:50p.i20’ 5:05p.i10’ doze 6:50p.hungry.i25’ -9:05 11h50-55= 10h50, up 4x So, CBD is stabilizing. And can’t’ve caused the depressiveness I had yesterday. Aim now is to get the sleep breaks shorter, preferably under 5’, so they aren’t as likely to be followed by lighter sleep/dozing. So I have to get them more effective, get the unrest & unwellness down faster. Best’d be a one-for-all-hack, so twist-stretch more & praps adapt it.
Nap:
Work:
Activities: Table tennis 5:3, overdoing it a bit. 70’ talking, or rather being talked to, bit too much… 18:30 Shop 30’
Feeling well: 80% after the long good sleep. Maybe the warm weather too. Body felt good after acupressure, but got more like 60% cos of the long talk and just tired and slightly depressed at 18:00.
Treatment: Acupressure: Ear & chest, esp. an area on the left flank.
GABA-research: Gaba - #3 by Karen6
Hacks: After standing I found it hard to go down, even after twist-stretching. What can I do? I hadn’t done my back exercises yet. Afterwards it was easier. Acupressurist said: twist-stretch inwards too! That easy?!
Ideas for wind on the balcony: Putting blankets over holes, see if that helps.
Tricks:
Pain: About 1-2. Sitting on a hard chair for 70’ in the afternoon was no great problem, altho it often is, but sitting on a chair at home, and then our kitchen chair with soft cushions on it hurt after 5’.
Gut: Good.
Diagnoses:
Development:

[JayCS]

2021-04-02, Good Friday

Sleep: 20:40- 23:25p20’ 2:05 p, Bit of pain left leg & foot arch, elbows, upper back, tooth. (CBD?-)Heaviness a bit better than the last nights. arnica cream (& twist-stretching) helped my leg, but not by foot arch yet 5:05p15’ try arnica on my elbows & foot arch too. First too warm, top off, now sore throat, so colder (CBD-hypothermia?) → gurgled with Marigold on, top back on. Maybe dozed some of this next 3h-stint 7:55 still very tired. 25’ 10:50 still tired. 14h10-65 =
13h05, up 4x
Nap: 16:15 bit feverish, so tired… again! 19:40 Dead tired again.
Work: Not on Good Friday.
Activities: No table tennis today. 16:30 1h cycle ride, incl. 5’ workout in breaks. OK, the wind was the hardest part.
Feeling well: Night: 70%- 17:00 wind 50%.
Treatment: Trying to keep body-centred as often as I can on this Good Friday. After back exercises I did the acupressurist’s ‘new’ belly palpations, after activating the soft palate (yuck!) and the cortisol points in my ears (ouch!). Result: No pee-pain at all! Coincidence? And am standing more upright, had that feeling last times, too.
Pain: When waking up at night: 3, a bit distracting, but OK-ish. Down with arnica cream, twist-stretching & Marigold. 11:30 Elbow arnica cream. After a while: Best more. Good all day. Kitchen chair was OK, so why wasn’t it yesterday?
Gut: Good.
Development:

To get a feeling for 'why pain’s so bad when we’re trying to get to sleep’ we need to watch and feel where exactly the pain is, often it seems to be joints, but is actually the tendons above and below them, or the muscles, both of which seem to seize up as soon as we’re not moving.

I love the question. The only way we are going to progress, and docs too. Docs have no idea of the biochemistry of our various pain-types and other symptoms yet, their 3-4 theories are still way off and explain if at all only a little part. And I think that’s because it’s so hard to explain to them what is happening when & ‘causing’ the various symptom-types. Fibro makes it hard for all of us, because there’s nothing to see. Docs make it hard for us, because they’d need to listen to us more. But it is hard for them, because we’d need to listen to our bodies more. Again, that’s some of the things I read (into?) the question.

There’s a lot more to our fibro-problems than just pains, e.g. sleep problems. And a lot more to our sleep problems than pains, e.g. sensitiveness to all kinds of things or just waking for apparently no reason.
The pains come from our other illnesses we have, praps made worse, from our condition generally, and from certain triggers.
Many of my pains come on when resting “too much”, not moving enough.
It’s even one of the problems with meds/supps that help me sleep with less breaks: I move less, so have more pain when I do.
Some pains come from movement of course, but some when we want to start moving while or after resting…
And my mum asking talking about vitamin D and covid made me look on pubmed for that and then also for newest fibro-studies, interesting…:
https://forum.livingwithfibro.org/t/studies-jan-feb-2021-1-overview-2-eyes-3-pts-4-genes-5-youtube/13594/2

[JayCS]

2021-04-03, Saturday

Sleep: 22:10- 1:05dry15’ 4:15dry Why no need to pee?! But thirst? Cos of palpating? Tried it again, but altho no gut problems, my belly hurts and is bloated! Almost no pee pain tho. Veeeery interesting! The palpations released the wind, no belly hurt any more . 5:05i1h20’ Also treated my elbows, wrists and jaw with arnica cream. Great idea, as the pain is going down. Daft idea for my jaw as now my tooth is hurting again. Longer break, shd be OK now. 7:35 hungry & gurgling - cos of palpations? Ate. 10’ 10:55 tired, pee not nec., but did, no pee pain. -11:25 13h15-1h55= 11h20, up 5x Maybe more if I’d gone earlier and hadn’t taken the long break of 1h20. Need to keep it as long as nec, but somehow earlier soon. Heavy eyes and head. Palpating & exercising helps a bit. Not needing to pee upon waking.
Nap: 0, despite tiredness & feverishness
Work: 0
Activities: New aim: How many hours? Including cycling. Housework: 12:00-13:10, some sweaty, but OK, task-switching every 5’.+5’ Phone-call 15’. Washing & drying hair 7x3’=20’. Table tennis incl. 10’ cycling 1h35, 3:5 foggy, slow reactions, bit better after activating my ear cortisol point. Cycling around 30’ - too cold, tired, foggy, feverish. 3h55. Enough.
Feeling well: Night: 80%- 16:30 30%- after table tennis,
Treatment: Arnica complex cream seems to be helping elbows & wrists, even after waking. Belly palpations seem to be reducing pee sensitiveness and pee pain, but setting wind free.
Pain: Sleep: 0-1, bit of tooth, only back stretching nec. in bed. Tooth again after cold cycling .
Gut: Sleep: Bit of belly, probably wind: Soy/dairy? CBD? Pee and pee pain? Not much at all!
Development:
Aims:

1. How long can my activities be per day (altogether and per stint). I’d told someone 4h and suddenly thought: How optimistic is that?
2. How is more drink with pee and pee pain during the day, now using palpations.
3. Keep at CBD oil for how long? At least 2 weeks, my wife & my acupressurist say, Started Thursday evening of Mar 25th., so this Saturday evening is the 9th time.

[JayCS]

2021-04-04, Easter Sunday - Happy Easter!

Sleep: CBD 19:00, 21:30- 0:20.0(p)30’ 3:30.0(p) 2x work-pressure-dreams (remembering seating, getting there & back) 15’ 5:35.0(p)35’ waiting-pressure (youth club) 9:00.0(p) 9:35.0 12h05-1h15= 10h50, up 4x Tired all over, but I’ll try getting up, with music, palpating, back exercises
Nap: 0
Work: 0
Activities: 1h fairly brisk walk! (Few breaks) plus 1h car ride there and back. With really walm clothes on. 1h 3:3 table tennis, exhausted and aching after.
Feeling well: At night: 70%. Daytime 50%, after table tennis 30%.
Hacks: For pain in my right knee on the long walk I tried twist-stretching, which did the trick. Same after car.
Tricks:
Pain: Tooth in the evening… & slightly up to the middle of sleep… 9:00 back stretched backward , then neck-tendons Traumeel (arnica etc.); then caused by the rubbing right elbow
Gut: Slightly bloated in the evening… & at night. Pee still good. Wind: no mix of dairy & soy today: Olive oil off?
Diagnoses:
Development:
Of course leg stretching backwards is still an on-going trial, not doing that enough yet to see if it will have success (aim: to always be able to put my socks & shoes on standing up).

[JayCS]

2021-04-05, Easter Monday

Sleep: CBD at 20:00, 23:05- 2:50 heartburn → Gastritol, nose closed → added top. doze 3:55u40’ doze 5:10w.p25’ → cold shower10’ (yup, getting desperate. Worked, but 7:40 cold → HWB. tooth ache. 10:00 (Problem apparently too late in bed…) 10h55-1h25 = 9h30, up 4x, 2h? doze Gonna try to tackle the heaviness at a point I find suitable, seeing as tho my body loses it’s threshold for to my sleep. 12:20 Flaring & feverish after 1h20 live church service (10’ cycling) → back to bed. -14:20 11h30
Nap: Not counting the additional 2h as nap, rather as the continuation of the night’s sleep. 16:35 feverish-tired again, but sort of feeling energetic, and lo and behold, as if my body had heard I’m gonna stop the CBD I have a clear head again, despite the tiredness.
Work:
Activities: 1h20 church, 10’ cycling. 1h table tennis 5:1, 10’ cycling. = 2h30 - enough
Feeling well: 60% after sleep. 20% after church, 70% from 16:30-21:30
Treatment: CBD: I’ve now had a look/read around for effect time and for total system time. As I’m a living side effect detector I’m considering the longest times: “As a rule of thumb, CBD oil lasts for four to six hours long, though a heavy dose may last 24 hours” and “for some it can stay in the system for weeks”. Habituation time of 1-4 weeks seems to be a) if it causes gut problems, which it doesn’t any more at this dose, and b) if it is not working enough . That’d mean either going down with the dose or stopping. 1 drop of mine I’m taking between 18:00 and 20:00 is 3,04mg, organic, full-spectrum quality (less than 15 mcg THC). The pages I’ve found are talking about 20mg as a low dose.
Longer sleep stints w’d be nice to keep… Interestingly, the longest stints come in the earlier hours 4:00 of the morning, which was 8-10h after taking it… I’ve tried again today to get me awake after 9h30 sleep instead of succumbing, but had to go to bed again for another 2h, because of feeling sick, feverish, heavy and achy.
The first 2x I tried CBD (3 drops) it definitely was that which drowsed me down completely, incl. gut, so it’s not unlikely that I’m hyper-reacting.
“However, it is also essential to mention that CBD oil can take weeks to show the first effects and results. So, what we recommend is for you to be patient and not increase the dose right away. Wait for some time, preferably between 2 weeks and a month.” CBD Oil For Sleep And Insomnia: Does It Work As Expected? - Terry Cralle
How Long Does CBD Stay in Your System? - CBD Nationwide
How Long Does CBD Stay in Your System? Healthline

Hacks: - Tricks: - Pain: around 2 most of the day. Gut: Good.
Development:
Something to watch: Before I get an occasional short dry cough when going to sleep, my wife hears me gasping(?) as if I don’t get enough air, if that might be a muscular or lung problem. I know what she means, but it’s so seldom that I’m not worrying. Well, OK, I never do ;-P. She’s asking if I praps want to get that checked, praps by a pneumologist…
My mum suggested Frühjahrsmüdigkeit (even engl. wp uses the term and refers to Germans getting this) / spring lethargy / reverse seasonal affective disorder, due to hormone changes. My wife says that wdn’t tho lead to anyone sleeping for over 11h… But sind hormones & thyroid are connected it’s reminded me that endocrinologist is next on the list.

[JayCS]

2021-04-06, Tuesday

Sleep: No CBD! Let’s see if I can sleep… 22:50- doze 1:05u(p)15’ doze 1:50w.i.i60’ doze 3:15w cold shower. 3:50 1mg melatonin. 7:40w.p 9:40(p) w/not -9:55 12h05-1h35 = 10h30, of that dozing ?3h40? (6h sleep)
Nap: 0, altho I was feeling a bit feverish-achy=tired.
Work: 0, altho I shd slowly be starting again.
Activities: 20’ shop. 20’ + 70’ visits.
Feeling well: Night: 70%. Waking 80%. After acupressure & short shop 40% exhausted. After break 50% during visits, but 17:00 have to rest → 60%.
Treatment: Acupressure centred esp. on the right flank & quite a few ideas.
About my occasional gasping for breath-cough she said we are treating the rib cage and lungs by working on the right flank, so it might get better from that.
Reminded me for self-care when working, remembering ‘little Jay’.
Suggested feeling if my belly is taut at night. She said I can do the palpations several times a day and night, but not the cortisol point (only in dire need, like the other day not being fast enough at table tennis, which had worked a bit ) or the palate point.
Also cold showering is OK if she only does acupressure on the ear and not on the body, I didn’t know that.
Afterwards I felt pretty free all over again, including my legs getting on my bike, altho they’d only been worked on via the ear. But dead tired from the so-so night. I had a stiff neck again from lying down 1.5h, but this time I just did some neck-stretching whilst cycling and that was enough
Pain: Night: Small pains & itches.
Gut: Good. Night: Thirsty. Had belly unrest a few days ago, which turned out to be pain when palpating, so acupressurist’s suggestion of checking & palpating belly at night fits perfectly.
Development:

[JayCS]

2021-04-07, Wednesday

Sleep: 22:15- 3:10! (apparently still have some melatonin in me from yesterday night! Yucky dream, someone due to be executed, I don’t dream disturbing things like that. Twist-stretching the yucky feeling in my limbs helps a bit, rest with autogenic training/fantasy I hope. → pi.55’ 4:45 youtube guided meditations not helping. 5:05 melatonin. 8:15p (dream: put a ‘bad show on’ at work) -10:15 12h-1h30 =10h30
Can I get up now? My wife (on leave) answered: You’ve never been looking like you can get up in the last few weeks… - time for more sleep memes…
Nap: 0, just fatigued, not feverish.
Work: Nope.
Activities: 1.5h cleaning up a wet mess in the kitchen which we can’t find an explanation for, but I’ve an idea how to stop it being a mess next time, whatever causes it. Shopping 30’. Otherwise resting lying down most of the day. Ah, can’t I stand long at the moment?
Feeling well: Night: 70%. 50% at day. 20% while & after doing up the mess. 14:50 90% while & after warm & cold showering. 15:00 back to 50%. 19:00 up to 80% pushing myself and using cortisol to go shopping 30’. 20:00 OK 60%.
Treatment:
Hacks:
Tricks:
Pain: 4 short colon pangs yesterday & at night that made me jerk. No idea what from. Ache around 2.
Gut: Heartburn after 10 chips/French fries…, down using Gastritol. OK all day.
Diagnoses:
Development:
Lucky to get an appt. with my ex-psychologist Tuesday next week. Makes up a bit for not having got an endocrinologist appt. arranged yet. Wary of more work next week. Don’t seem to have got a different work schedule as hoped.
My wife once again said she doesn’t think I am better now than a year ago, which can’t be right, she’s catastrofying there. But it shows that just getting the pains down is neither allowing working that easy or my quality of life, got to do more there. Praps something for the psychologist.
Got an endocrinologist appt. Monday next week, too, lucky again. Embarrassing luxury of private insurance.
Before I get confused: Monday 1-2h endocrinology, Tuesday 2h acupressure & 1h psychology, Wednesday 1h online work conference & Thursday 2h the 2nd acupressure.
And work, hopefully in home office, but the numbers are going down, so might not be lucky. Or I have to go on sick leave again.

Which of my current meds has a well-known side effect of tiredness?

Lercanidipin: Yes, occasionally (German, not English, wp) (24h)
Candesartan: No.
Atorvatastatin: Yes. And myopathy / muscle pain, which hasn’t increased much at the moment tho.
Ezetimib: Yes, according to German wp, English wp says myopathy and myalgia, but rarely.
Aspirin: Doubt it.
Selene: tiredness yes - but only in big overdose, my 200 mcg sh’d be OK. But it’s something which fits to the time when the tiredness started. So it might be me over-reacting or a combination effect.
Roseroot: Gets tiredness down, not up.

Two ideas:
A. Stop all 4 at the same time. If that helps it’s one of them, if it doesn’t help, then it’s none of them.
B. Stop the 2 easiest. That way my docs and wife’d be less worried. Selene is a supp for the thyroid and lercanidipine I’d already checked with the heart-prof that I can take more of the candesartan instead. That’d also have the advantage that it’d narrow it down more. If it doesn’t help, then I’ll help to take sick leave until I’ve sorted out what does, if anything.

Whilst I do enough twist-stretching, I keep forgetting to do enough specific leg stretching, so I’ve got to make it a competition. I just did more than 3x20’’=1’ per leg. That’s got to get more!

[AussieMom]

@JayCS

but the numbers are going down, so might not be lucky. Or I have to go on sick leave again.

Wishing you the very best, JSC! Saying prayers for your health, my friend!

[JayCS]

2021-04-08, Thursday

Sleep: 22:45- 00:15p 1:35p.heartburn10’ sweet potato → worse, → Gastritol 2:30i40’ doze 3:50p refusing to take melatonin, trying all the tricks in the book - counting, autogenic training, fantasy journeys, self-hypnosis, deep breathing, additional blanket. Short single pains are no problem, but my pulse keeps starting up, esp. when I think of people incl. myself. Still a bit of heartburn, probably due to something spiced up with ginger at midday. Or evening meal too late. Altogether gone too late with bedtime. → earlier. Hot water bottle. Perhaps get weighted blanket after all, at least for legs? Standing proud, walking straight, to and fro, after twist-stretching. Not letting myself get put down, not giving up. dozing 5:00p5’ Limbs and eyes not as heavy as when ‘drugged’. Nose clotty most of the time, but OK. Hot water bottle too hot, but nice to have near. Hmm 1h10 can’t just be dozing, can it? Don’t care. Gonna pull this thru. ‘Clean’. 5:50 stomach burning → soy drink. Dozing. But I feel free. Even wild & free. Enjoying this night. Feel like getting things done today. Let’s see if I’m able to. Who cares. I’m alive. I feel alive. 2nd weighted blanket oppressed me, threw it off and twist-stretched it away. Sinupret for my nose. Neck hurts only when trying to lie on my front. Stretch. Nose free from being up a litlle bit. No or little pee pain. Hope. 6:45 Got a gasping-cough fit again, exactly as my wife described. It definitely is much more worrying than I remembered. Lying on my side not back. However it wasn’t in the lungs, it was in my throat. Bit of mucous there (suddenly) too, not as dry as I remembered. 6:55 And altho both nostrils & sinuses were free of mucous. Feel like getting up, eyes wide awake in bed. But itchy after 5’ up, just not heavy. No feverishness or heavy limbs. What’s my tally? 22:45-6:55 = 8h10-1h15 = 6h55, up 7x and dozing almost all the time, bp 125/91 53. That’s a high diastolic level. Caused by too little sleep. Can a lack of sleep cause high blood pressure? - Mayo Clinic
Gasp-choke-cough: Waking Up Gasping for Air: Anxiety, Falling Asleep, Acid Reflux Ah: postnasal drip. Can be caused by sinus infections and by GERD: Waking up gasping for air: Anxiety, sleep apnea, and other causes Since I always have a little bit of mucous in my nose, it cd just be that. If COPD a pulmonary function test, to diagnose respiratory conditions wd be done to check. But I think I’ve had this done at the ENT several times, never any problem and I don’t feel a lung problem now. Nasal spray or neti pot can help with the sinuses. Got them and don’t really like them tho. No wonder my nose is free, it’s all down my throat.
bp #2 7:15 119/80 56 - that’s more like it. bp #3 7:25 130/88 52. Oh well, back to bed for a nice drowse-snooze! at 7:40, so that was a 45’ break and the sun’s up, so might be harder to sleep now, who knows… I’m curious. 9:10 Not bad… 22:45-9:10 10h25-2h=8h25, up 8x, mostly dozing. Who cares.
Nap: 15:20-16:00 → 9h05
Work: At least I did a few preliminaries, and other work-like things.
Activities: Used the lack of sleep as it’s now gonna be a cortisol day, adrenaline pumping, hopefully I will break down sometime. ±2h housework. 1h walk.
Feeling well: Night: 70%, despite mostly dozing. 9:10 80% 14:00 70% slowly getting a bit feverish & tired. 15:00 50?% tired & achy → nap. After nap 16:15 80%. 19:00 during walk down from 70% to 20% due to IBSD, then a bike jolt and just generally now dead tired, but slowly up to 50% at 20:20.

Treatment: Leg stretching: 3x 1min.
15:00 Just tried Tension & Trauma Release Exercise / “neurogenic shaking” by David Berleci https://youtu.be/FeUioDuJjFI but it’s too hard for me, at least at the moment.

Pain: Night: Bit itchy. Twist-stretching occasional pains works in seconds. Still no or little pee pain. Neck hurts from lying on front, but lying on side is better than it used to be. Ache about 2 thru tiredness. Pee pain 5 due to belly pain 6. Occasionally tooth pain 2, relaxing helped.
Gut: Night: Heartburn from ginger or late eating. 6:00 Stomach burning → soy milk. 18: IBSD, praps still from the ginger yesterday, I wdn’t know what else, other that I’ve eaten a bit more chocolate, vegan & dairy, and more dairy yoghurt & cheese.

[JayCS]

2021-04-09, Friday

Sleep: 21:30- 22:55p 0:00p (headache 3, nose a litle bit) 2:40p (no dozing, all sleep, thirst?-headache, not bp: 127/85 59) 3:55p (headache → immune herbs) 6.55p (sore throat → Marigold) 9:10 (awake but heavy, bowel pressure, at least wenn testing, OK getting up) 9:20 -9:35 12h05-30, 11h30, up 6x Heavy closed eyes & legs, stiff neck. Not much better getting up after palpating & back exercises at 10:15. Very stiff “knees” and “hips”, not other joints. Twist-stretch. Ache in arms & legs remains. 10:20 feverish-feeling.
Nap: Fairly OK in the afternoon, treatment and after.
Work: Didn’t do anything, altho I’d wanted to.
Activities: Not much. 17:00 table tennis 0:2 → 4:2, but strenuous. Shopping 20’.
Feeling well: Night: 40%. 10:15 40% Ache, shakiness, feverish.12:15 50% Bit better just sitting typing. 15:00 80% after acupressure, focal seizure remembering a place associated with a strong focal seizure, cycling, to 60% eating, writing & waiting for table tennis at 17:00, down to 20% at the end of table tennis, then 20’ grocery, 2nd focal seizure by a jolt due to uncomplete bike control, while standing at traffic lights: 10%. While & after typing etc. slowly back up to 60%.
Treatment: Leg stretching: 1’.
Palpating: Did it more at 9:30 after yesterday’s IBSD-crisis. Got everything soft fairly quickly, the 2 quadrants under the belly button were pretty painful, even after the fourth one was soft - is there any reason not to treat the 4th one, like she said, and is the aim just to get it soft or also to reduce any pain or pressure? → If it helps do it, she replied…
Back exercises at 9:50 - I do these meticulously at the moment, like never before in my life. Work won’t allow that, I won’t have the concentration.
Pain: 3 before bed, 2 at night. 10:15 Ache & shakiness 3. 18:00 No pains, but Ache of 6/7 during and esp. after table tennis, and shakiness, 7 means on the verge of or actually crying.
Gut: Belly & pee ache before bed, better after palpating. Just heard that apples contain a lot of sorbitol, and I’ve started eating more lately https://youtu.be/7ENMwTB4LlA?t=472. But I doubt the sudden IBSD-flare yesterday was that, since it was only once. Ginger is the more probably trigger. No new problems today. Still haven’t dared to try the 1 spoonful of ginger-salad again.
Development:
Wondering whether it’s best to take sick leave from Monday on, or as soon as it gets too hard, esp. when I’d have to get up too early. And taking down other activities more, like singing/production lessons. Or whether my sleep/body will miraculously get better in the next few days…
I do not feel at all well, altho sleep was good & long, pains are still down and even improving (bladder, gut). Feverish & weepy while & after table tennis.

[AussieMom]

@JayCS

I do not feel at all well, altho sleep was good & long, pains are still down and even improving (bladder, gut). Feverish & weepy.

Dear JCS,
I’m sorry you’re not feeling well, but I’m glad you’ve been able to get some sleep - Sometimes rest and sleep are all that will help when my body rebels.
It is sad to have to cut back on the things you enjoy - I think I was much happier when I was able to have my “music” side of life. Rather than a 2nd job, I looked at it as absolute joy. I hope you can continue to keep things in your life that give you that kind of joy. Hang in there, my friend!

[JayCS]

2021-04-10, Saturday

Sleep: 0:00 (lack of social control, too many ideas…)- 3:30! (wow!) dozing 4:15i60’ dozing 5:55 focal seizure. Oh, let’s try cold showering, what the heck. 30’’ Back to bed in 5’, sleepy & warm, & hot water bottle. 9:05 (wow!)i10’ doze 10:05 10h05-1h20=8h45
Let’s analyze that: 2x3h good sleep, 2.5h bad in between. How? Tilted my self-hypnosis-feeling to a concentrated feeling at the back of my head, then untensed head and jaw, then autogenic training more intensely. Also interesting that cold showering helped again - kept under 30’’ (20’’?) and back in bed after 5’. Also used my eye mask when up, or even just lying in the morning, for head comfort as well as blending even more light than the blackout blinds. And going to bed late after eating late was a “good idea” as far as stomach/gut was concerned.
Activities: 1h Table tennis 0:2 → 4:2 with a 4’ break in the middle, good idea, 15’ cycling. 3’ workout.
Feeling well: 90% in bed and till cycling 1’ 70%, table tennis 60-40%, stumbling, Aching, 4th focal seizure after the break. 60%. 16:00 1h talk, 45’ cycle-walk → 40%.
Treatment: Leg stretching 3’ (now properly, like the acupressurist corrected it.) (She also recommended using olive oil with sugar or salt to get my dry hands better.)
Pain: Ache 4 after table tennis.
Gut: Ate late… but went to bed 3h later, maybe that’s why it went OK.
Diagnoses:
Development:

*Feeling well* since 9.3.-10.4.: In April seldom above 70%, often 20-50%, so worse than March. Sun? 22nd...

09.3.: 70%-45%
10.3.: 80%-60% (or less)
11.3.: 70%
12.3.: 70% (+ tiredness 30%?)
13.3.: 70-50%
14.3. 80%
15.3. 70%+50%
16.3. 70%+60%
17.3. 70%-30%
18.3. 65% sick leave from here on.
19.3. 50->30%+60%
20.3. 70% (tired 30%)
21.3. 50%
22.3. 80%+30%
23.3. 30-50%
24.3. 60-50%
25.3. 30->70%
26.3. 70%
27.3. 70%
28.3. 70%, except 20% for 1h after table tennis
29.3. 75%+40%
30.3. 70-80%
31.3. 40-70%
1.4. 80-60%
2.4. 70% (+50%)
3.4. 80% (+30%)
4.4. 50% (+30%)
5.4. 60%+20%+70%
6.4. 80%-40%
7.4. 90-20%, mainly 50%
8.4. 80-20%
9.4. 40-60% (+80%)
10.4. 40-60%

[rosebud74]

Hi JayC I am sorry yesterday you felt so rotten. Is today any better? It takes courage to tell folk how you feel when it comes to feeling weepy. This has helped me when I feel like this that it is OK to tell folk and not to feel that I shouldn’t do so or feel ashamed of being the way I am. Thank goodnes for this support group when we can share how we feel. Praying for you JayC.

[JayCS]

Thanks rose!
My wife and I actually wept together yesterday, she said “you really are ill, aren’t you”, I said “yep, spose so”. Moment of truth. Sometimes it really helps. The other part of “truth” is to gather up courage, adjust crown, walk on…

The other feeling of weeping is the muscles weeping, heaviness weighing and wearing us down… Resting, sleeping, self-caring is good. But sometimes using them a bit, breathing-exercises, cold-showering is too. Sometimes I think I’ve given up too much on trying that. Sometimes it does help. And if it doesn’t it can’t really make it worse. I half-accept it’s a flare I can’t do anything about, like when you get the flu, but I’m also half-hoped carrying on looking to see if I can find a trigger for it…

OR

When I said I enjoyed dozing all “Wednesday” (going on Thursday) night to a female friend, she grinned and said: Yep, that’s you. My wife often says I’m wearing rose-red glasses, sugercoating how I’m feeling. But why not… some of the time…

Inspiration…

Mr. Mister - Broken Wings

Mr. Mister - Kyrie

Darn, made me again. Kyrie Eleison!

[JayCS]

2021-04-11, Sunday

Sleep: 21:20- 22:55p 0:20u (lower back → various back-stretches) 1:10u 30’’-cold shower & hot water bottle 10’
Nap:
Work:
Activities:
Feeling well:
Treatment: Leg stretching
Hacks:
Tricks:
Pain:
Gut:
Diagnoses:
Development:

Just reference

2021-04-12, Monday

Sleep:
Nap:
Work:
Activities:
Feeling well:
Treatment: Leg stretching
Hacks:
Tricks:
Pain:
Gut:
Diagnoses:
Development:

[JayCS]

2021-04-11, Sunday

Sleep: 21:20- 22:55p 0:20u (lower back → various back-stretches) 1:10u 0’’-cold shower & hot water bottle 10’

Draft Glitch:

I just got told I cd continue editing and said: Yes, but the change I just made is visible as saved, whilst the draft does NOT have the last change!)

Ah, now I can see that “continue editing” was somehow understood as continuing with a double post. Maybe caused by too impatient wanting to edit again after just having saved. Patience!

Whoops, that took me another +15’… 3:30p 4:25u → back yoga 10’+5’m+10’fw 5:30w 8h10-1h05=7h05. Hmm, why did I suddenly feel awake? Eyes are itching now… Cold shower probly not helpful now(?) Am I awake bc the autogenic training all night was so effective? Why the unrest in my back at night tho? If it’s something like RLS why so seldom? No reason to take a med. But the cold shower did not get rid of it.
Ah, I feel like lying down again at last 7:40-9:25 +1h45 → 8h50 (Nap: 0)
Neck problems after acupressure on my back and after sleeping on my front. NECK EXERCISES!

Work: xls, 14:05-50= 50’
Fibro-‘Work’: 3h35
Activities: 11:00 30’ sorting stuff on the floor (in pain). Spose I shdn’t, but I’d love doing that once in a while. 12:00-13:30 Sitting is better, standing a bit worse. 14:20 now sitting to work, better. 15:30 Sitting to sort. 16:15 cold shower 16:30 table tennis 5:3, but very relaxed, that’s why more was no problem, again with autogenic training.

Feeling well: Night: 70%. 11:00 Sorting stuff → 30%. Sitting 40%. Standing 30%. 14:00 working standing 50%. 14:20 sitting → 70% 15:30 16:15 2’ (warm-)cold shower 90% itchy tired eyes. 16:30-18:00 table tennis 80%-60%. 18:00 fibro-work 60%, sorting stuff 70/80%!
Pain: Sorting stuff on floor → Ache of 5/6. 14:00 working standing 3, sitting 2. 16:15 cold shower 1. Autogenic table tennis: 2, no myofascial torso pain. Fibro-work 2, sorting 2 (back)

Treats/Hax/Trix: Leg stretching 1’ Palpating almost no belly pain there. 16:15 2’ (warm-)cold shower 90%.

Development:
I’ve put ‘pain’ up next to feeling well. Will combining confuse me? Feeling well is more important than pain as I often can’t directly express how much pain I have and my feeling ill is influenced by, but not particularly dependent on pain. For tomorrow I’m rearranging everything.
Leg stretching
Palpating
NEW: AUTOGENIC TRAINING MORE INTENSELY THIS MAY BE HACK #1!
(#1 because this may well have improved sleep as well as table tennis today, the 2 weakest points.)
(Improved technique: Close eyes tightly; then move that feeling to the top and then top back of the head. Take pressure out, relax jaw, then start AT with toes, counting 4x4 for each part, moving up from the toes to the torso, then fingers to shoulders, then torso from bottom to top, neck, head. If I lose it, start again only counting 2x4 if that part is relaxed & light enough already. Enjoy it not just in the toes but in every body part and the end the whole body. With practice I may get it quicker, but on bad days the long way is best. Always keep the tight feeling in my head, bc that shoves thoughts down. I spose it’s a kind of progressive muscle relaxation in my head, but it feels more like self-hypnosis, a tight concentration.
Do it whenever I’m in bed and not sleeping. Instead of just plain dozing. And as often as I can instead of getting up. Maybe like Zen monks I can simulate sleep. Pretend at least )
NEW: Keep COLD SHOWERS to 20-30’’ at night, if nec. try more than once.
NEW: NECK EXERCISES *
NEW: THINK BEFORE I DO ANYTHING FOR WORK. *
NEW: UNREST IN MY LOWER BACK? - YOGA?
NEW: Count Fibro-‘Work’: Need to keep track of this more, out of interest, self-control, self-care.