JayCS’s Fibro Blog

[JayCS]

2021-02-02 Day 23 of working again, Tuesday - weird day, but OK

Sleep: Good, stopped after 8h, at 6, awake. Let’s see if it works.
Nap : Tired at 3:25-4:50.
Work: Did quite a bit. When I think of going there again after the lockdown, lots in me says no.
Activities: Too wet for table tennis, so more time for work and singing. Not going out for grocery much, but isn’t that nec anyway.
Treatment: Ozone was OK, 1st bus driver 2 mins. early didn’t see me standing aside out of the rain, 2nd one 5 mins. late - a bit wet, but OK. Quite a bit of energy there and back, but also tense after that happened, had to keep relaxing my torso.
Got an appt. with my public health officer in 3 weeks to decide if I’m allowed to carry on with vocational rehab. As I said above I think I have enough reasons for him to convince my employer that I can do so.
My rheum. phoned back today, after 3 months of trying to get her to, to find out if I have Sjögren’s or not. The one who’d diagnosed fibromyalgia in Feb, but only gave me the advice to continue with sports and prescribed metamizole, which I c’dn’t tolerate. She said I haven’t got Sjögren’s and I’d do best to get the idea out of my head (ehm… what is she trying to tell me? It wasn’t *my idea…). Her reasoning was that they didn’t find any lymphocytes at all in the lip-biopsy, that the alpha-phodrin-antibodies were only slightly higher than normal, 17 instead of 15 and I don’t have dry eyes, only a dry mouth, which c’d just be from heating, open mouth, it isn’t, so I suggested that it’s just the fibro and she answered, yes exactly, and it’s OK to live with “that” (fibro or dry mouth I don’t know), it just takes the right frame of mind… (yes, we think we know what she’s saying…). Not really satisfactory, but is this enough to go get a 2nd opinion once again?
Hacks: The thigh pain is probably from by bar stool, which I actually want to lean not sit on, but do sit on too long. That was the only suggestion my acupressurist could second yesterday.
Pain: I haven’t been reporting on that, because it’s actually edit: QUITE GOOD all the time… sorry about that…

[JayCS]

2021-02-03, Day 24 of working again, Wednesday - very good sleep despite long afternoon nap
Sleep : Good, up at 10-6, awake, only 3 short breaks.
Nap : 2-2:40 b/c of video conference, w’d/c’d’ve been more, tired all afternoon, even more after 6 - so going to bed at 8:15 for the first time since I was about 8yo, I think!
Work: Lots to do… Oh dear, well planned video conferences that don’t at all work, are silly, due to technical & human problems. I don’t think I’ll do that again, at least not like that. Had to do a second one later with just 6 people, that was OK… Voices are getting louder that the lockdown will go on till March or Easter - wdn’t be bad for me.
Activities: Rain most of the day, so put table tennis off. Enjoying cycling fast to 3x grocery. My wife is helping me get my skinny trousers off this week (4 pairs of socks & skinny trousers need a new technique) and seeing us having to move into a bungalow…
Treatment:
Hacks: Got to change position more, again. Standing isn’t good, sitting on the soft couch isn’t, and I’ve put the bar stool aside first, to see how the thighs react.
Pain: Back got pretty bad yesterday, more lying down w’d be clever.

[JayCS]

2021-02-04, Day 26 of working again, Thursday - crazy sleep

Sleep: 20:30-7:30=11h-3h30=7h40+40’nap=8h20. Whoops-a-daisy. I hope I’ll get tired & can have a nap at 10 or 11 this morning to have more time this afternoon.
After going to bed so early, 8:30, I found myself wide awake 3h later and not tiring enough even after 2h, 2h30, 3h awake… I was going to try not to, but now I’ll have to cold shower to get tired enough again… While showering I remembered that before I was wide awake I was feeling hot (not the first night either), checked the heaters, all were off, the temperature in the room is 18°C, so cold enough. Hmm… temperature … hot … cold … cold when I’m hot… ??
Very interesting that after the cold shower, with cooling down 2h before and 10’ after, the opposite happened, for the first time ever, I was freezing, put a hot water bottle and sweater and heating on (it remained 18°C tho).
So next time I’m hot & awake at night I’ll try cold shower immediately and straight back to bed. Despite a few good nights there’s obviously still a sleep + temperature issue somewhere.
Also interesting: I’ve had to actively relax my jaw in all the good nights and that helped to get to sleep quickly. Tonight it was totally relaxed, nothing I c’d do there at all. This corresponds to when my torso was tense after missing the bus back from ozone, and thinking that that might always be the case, but soon realizing it isn’t at all.
Gut: My stomach was burning most of the night, alleviated by my regular sips of soy drink. Not like after something really aggravating like onion-like, spicy or sour, more like after potatoes. The only thing I can remember eating differently was warm wholemeal rice. I know warm foods often do this, but am surprised at the rice. There’s a lot still there, so I can test that. It wasn’t eating late, b/c we did that at 7 - unless going to bed earlier or being so tired was the problem…
Nap : 10’ rest directly after therapy, then another 10’ at home between lunch and granddaughter.
Work: 3h non-stop, bit hard on the back, but OK, and sitting soft better for the thighs.
Activities: Table tennis 3:3, sweating like mad, maybe too much on. Granddaughter 2h on playgrounds and just pushing her around on my bike. Great! Cycled extremely quickly there and back.
Treatment: Back of Thighs, calves, backside, flanks: trigger pointing, vibrations gadget, pneumatron. Hurt as usual, but came out oiled & strong once again.
Hacks: The Charlie Chaplin-twist as my acupressurist calls is, is praps more fitting, because the outward turn is more effective than the inner one.
Pain: Quite good most of the day. However sore & stiff muscles/tendons in the evening, hard moving, I have to keep laughing when I fall over trying to get my trousers off, as if I were drunk, my wife doesn’t find it quite so amusing.
Gut: Unrest, but good.

[JayCS]

2021-02-05, Day 27 of working again, Friday - great sleep

Sleep: 9:30-6=8:30-15=8h15+20’naps=8h35 awake at 6, feeling slightly shaky, but good.
Is ozone what’s improved my sleep or is it the new natural flow instead of a steady rhythm?
Nap: 30’, c’d’ve been more…
Work: Not much…
Activities: Table tennis 9:0! From the ozone? But after that not too good. Longer walk with a mate was a bit too much and cold.
Treatment:

• Ozone: Better sleep?
• Acupuncture: Not good at all. I talked to the doc after the ozone, and then spontaneously tried acupuncture. Same as the first 9x last year tho: This time the acupuncture doc used a specific regime for FMS, but it again ended up being 20 needles, not the 1-3 he had said before. I kept having to remind him what he’d said last time, but that didn’t help. He expected me to be able to move a little bit with them in, to make myself comfy, but that was very painful in feet, knees, back, neck, hands and elbows when I did, so he took the back ones out again, only those next to my belly button and 3 of the 5 in my head didn’t hurt. Still tense to not inadvertently move. Pains didn’t stop all day, first feeling shaky and shaken, but c’d walk OK, feeling slightly ill, nauseous, feverish, stabs as if the needles were still in there, but not where the needles were, about 10-20cm away from were they’d been. On the other hand I was able to play table tennis very precisely all the same. However the pains stayed and increased slightly till the evening, so I cold showered, which I knew from my acupressurist that that w’d neutralize it. The pain was then gone (apart from right knee) and table tennis went well again on Saturday too. Altogether it was too close to my last experience for me to continue it, tho… He was reluctant to do it parallel to the acupressure anyway, but my acupressurist had done other things the last 2 weeks, so I thought it OK to try it out. He’d also preferred ear acupuncture, but we decided against that seeing as my acupressure is ear acupressure. My GP surprised me when I told him after, telling me he does quite a bit of acupuncture every week himself, that he’d never tell me to move with needles in, he’d never’ve put in more than 3 very thin needles, maybe even only one, and people saying original Chinese acupuncture is right for Western people can’t really be right, because that would involve very long, thick needles which they use in China. Confusing… O.o
• GP: Cardio… Hashimoto, see diagnoses.
  Hacks : The “Charlie Chaplin” works mainly thru the outward position. 8’ back exercises do not help as much as 15’’ of the Charlie Chaplin!!
  We fibro-mites sh’d be doing probly be stretching all day, like a cat, at least I sh’d:

Cat stretching : ストレッチしている猫

Cat stretching : ストレッチしている猫

猫の伸び5連発【おはぎ編】

Why doesn’t it look as cute when I do it?? OK - I’m not feline, that’s for sure
Pain: Quite a lot the whole day, due to the acupuncture, stabs, burning, aching as if the needles were in, but not where they were, somewhere else, often about 20cm from it.
Gut : Cos burning unrest in stomach at night after cold rice, I’m now trying to keep the rice to midday and keep to bread in the evening.
Diagnoses:

• Blood fat lipoprotein a result not there yet. LDL still nice & low, a bit higher than it was. Triglycerides lower enough at last. HDL 20% too low: Eat more Anthocyanes: plums, dark grapes, raspberries, cabbage, aubergines, 50g of dark chocolate a day can improve its antioxidant effect? Bitter’d be better than no chocolate at all I spose. Niacin vit. B3 to improve HDL better not over the counter.
• Ashwagandha (“Indian ginseng”): Sposed to be good for lots of things, in my case blood fats, thyroid and sleep; I’d have to watch out for IBSD; blood pressure & autoimmune reasons for sending info to my GP.
• TPO 10% too high (thyroid), but in July it was 50% higher (i.e. double what it sh’d’ve been): Inflammation. Confirms Hashimoto. GP recommends selen 200mcg and new check in 1 month, to see how it’s changing. * TSO 2: Also to get other organs checked for inflammations there, not sure if that was checked a year ago, but I do think so. The endocrinologists in my town are lame as heck, so that’ll mean an appt. an hour away.
  All others thyroid bloods (T3, T4 TSH) are OK. The TSO might go down by itself or by the

selen

(“selen-yeast” contains selenomethionin, which the body can supposedly use better, sodium selenit does too, altho anorganic; neither is proven for Hashimoto, just a tendency, so I’ll keep with the sodium selenit; foods for this are paranuts, coconuts & sunflower-seeds, but these all increase blood fats, and certain champignons, which I won’t find)

• Creatinkinase as well as the CK-MB/CK Ratio is slightly too high, meaning myocardial (heart) problems. That has been checked several times, but I’ll put it on the agenda for the angiologist/cardiologist.
• No Sjögren’s: I’m going to embrace the interpretation of my rheum., that if the lip-biopsy has no lymphocytes, then I have no Sjögren’s.
• Psoriatic Arthritis, PsA?!: Just been suggested to check this by C… I do have remarkable tendon stiffness, with some pain, which might be called enthesitis (mine’s diagnosed as polyinstertionaltendomyopathy, but my 1st orthopedist diagnosed polyarthritis), incl. Achilles and foot pain, but no tenderness, no swelling anywhere (joints, fingers, toes, eyes), I have dry skin, but never colouring (red, silver or grey), quite often strep throat (Marigold essence) 1 toenail that suddenly split & seems sort of fungal (new, which I’m treating with tea tree oil; white, not at all dark, or dull or distorted, or brittle or smelly, but not yellowing or browning either); 1 fingernail with pitting; but seldom other nail problems; lower back pain, but no spondylitis in MRI, itchy eyes sometimes, but otherwise perfect, exhaustibility, a sort of fatigue, but energy too; no family members with any of this, no HLA-B27; no reduced iron; almost nothing in X-Rays (a little bit of osteochondrosis in neck and lower back) (using mayoclinic, healthline). C’d be the “axial type” (German site), since my first rheum. got my lower back checked for spondylitis but it cd’n’t be found, and you can’t see anything on my skin, but I can feel it.
  Bottom line: I have a bit of everything. I got 7 points on a German questionnaire of a support society (GEPARD), and 4 w’d’ve been enough if I had psoriasis (which hasn’t been diagnosed tho). Definitely needs to be watched. I’ll ask all relevant docs that cross my way. Since my 1st and 2nd rheum. don’t seem helpful, I’d try a 3rd one. Seems hard to heal anyway, but good to know… It can increase cardiovascular disease. The meds usually used (NSAIDs, DMARDs, or biologics (biological DMARDs), steroids, immunesuppressants) w’d either hurt me or reduce my immune system. Diclofenac in January didn’t help, neither did ‘all’ vitamins (however not B3; & minerals). I already have to use omega 3 and and extremely healthy diet. I don’t tolerate turmeric. I’m doing sports. My grade of disability might increase which might have a small work (1h/w) & small financial benefit.
• My wife to a short summary of PsA replied: Sounds like you want a new diagnosis… - sounds like I’m hypochondriac. But I’m not worrying, I’m interested, a bit fascinated and I’d do that for someone else, in fact I did. I once knew a boy with very difficult symptoms Parents & docs were at a loss. Internet was fairly new, but I knew my way around and was finally pretty sure that he had “Primary ciliary dyskinesia” (then called immotile ciliary syndrome). I told the parents, they went to the docs, and I was right. And I researched for my colleague who struggled with pain & fatigue a few years before me, and wasn’t sure if it was Fibro, so I suggested CFS too, and found an interesting mail to her showing I was getting exhausted quicker 2016-09-24). She has scalp psoriasis and Hashimoto and dry hair & eyes.

[JayCS]

2021-02-06, Saturday, short sleep
Whoops, slid past me, putting some things I thought, worked thru or wrote in the “diagnoses” block on Friday (e.g. PsA). So have to change Sunday to Saturday and try to reconstruct what yesterday was about. I think I’ve lost something, cos I remember writing that I’ll have to put work off till Sunday. It’s not in drafts, not in my replies and I can’t remember discarding anything… Have to try to remember what I’d written.

Sleep: 22:05-6:15=8h10-55=7h15, plus nap= 30’ = 7h45, wow: short, let’s see if I have to nap (ah, I wrote that too)
Nap: 15:10-16:50=1h40, yep there it is…
Work: Wanted to work, but work thru my health stuff first… Oh dear, too much, have to work on Sunday
Activities: Table tennis 7:1 despite wind, which usually makes us more equal. Ozone again? 2x grocery.
Treatment: All pain from the acupuncture is gone now.
Pain: Increases towards the end of the day, but often more like sore muscles.

[JayCS]

2021-02-07, Sunday - Winter Wonderland; weird sleep

Sleep: 22:20-9:15=11h05 -3h50=7h15+ 1h40 nap= 8h55. Yukky lower back at 23:00, altho I’d done full back exercises, tricks & hacks had no chance. Snow sweeping at 6 was OK, sleep after was good.
Nap: Snow shovelling seems to have kept me awake all day… just tired after 19:00.
Work: “Do lots.” Well, did do a few hours, learnt & applied changing jpg to pdf and how to make pdfs smaller best, be needing that now a lot in home office.
Activities: Sweeping snow for half an hour at 6 and 9 and 17. Made me feel healthy, even tho my arms were & are aching like heck - they w’d for anyone and always did. Bit closer to workout than to kitchen work tho, and still energy and no stiffness (from the cold?). Definitely resting after, slept 2h after the first time. 12 Scraped & swept snow around our table tennis table, getting tougher now. 13:00 Table tennis 5:3 due more to the wind than the snow. 19:00 apart from normal sore muscles etc. only few problems from the snow shovelling (just a bit feverish, bit ‘ill’ in between).
Treatment:
Hacks:
Tricks: Menthol mix on a tissue for nose at night still often works, without too much stomach burn.
Pain: Severe p-pain once at night, altho I’d relaxed before.
Gut: Slight heartburn at night. Seems not to have been a problem the last weeks, whatever yoghurts I eat in the evenings, so I’m still not sure, altho I still suspect vanilla yoghurt a bit, so preferred to eat that a midday. At a tiny bit of strawberry yoghurt in the evening, let’s see…

[JayCS]

**2021-02-08, Monday - **

Sleep : 21:55-7:10, 9h15-45’ = 8h30, +0’.
Nap:
Work: 9-12. Need to note it here. 17:40-18:50 = 1h10, 19:10-20:00 0h50: 5h. Fun, getting used to it. Got really good feedback from someone I thought doesn’t like me, that I was doing good stuff for them.
Activities: No end to snow shovelling: My wife’s car for 30’… yard several times. Table tennis table shoveling went quicker, played 6:4 (games are shorter when it keeps snowing).
Treatment: Trying roseroot again for blood pressure, my GP had prescribed it originally and agrees it’s the right time to try it again to get down from the meds. My blood pressure & pulse were very low before (108/59, 62) and after (109/65, 56) sleep, that’s what I guessed too. Also getting the selen going once it’s got thru the snow. Treatment today was mainly the metal vibrating gadget, legs once again.
Hacks:
Charlie doing the arm twist n stretch too…

or more “correct” (from my “darker” past )

Wow - that works, maybe a reason why that’s the “first position” in ballet…
What “about a boy”? … trying a bit more boy’s elegance…:

Tricks:
Pain: From the snow shovelling of course… But oh, what a lovely feeling again of really sore muscles, due to having worked too much. I always used to love it and am now realizing again: It’s quite something different to fibro-soreness!
Gut: Reflux at midnight, probably due to the 30g of strawberry yoghurt in the evening… but the yoghurt was nice to taste… Try the next 20g at midday… Champignons are windy things.

[JayCS]

2021-02-09, Tuesday- work flash, stopping sleep…

Sleep : Much too short, 7h got a thought/work flash at 4, and cdnt really get back (22:15-7:25, 9h25-2h10=7h15)
Nap: 1h25
Work : About 2h at night, 4-6. from 7:30-13:30 in the morning = 8h. Finished for today, but still have to prepare for tomorrow. Darn. Completely shattered. Good that I can manage it, but… Hardest was the last hour, trying to stand up while working, to relax my thighs, which hasn’t worked, everything hurt. Turns out the buses aren’t running tomorrow yet, due to the snow “catastrophe”, so I won’t have to go to the ozone, so I’ve got more time. A new colleague-mail to everyone in the evening turned on a new chain / train of thought. I know I need to wait till Saturday to write a mail to all colleagues, in a similar vein, however also slightly correcting, but the ideas/lights are already flashing. Hoping to keep my thoughts off of it tonight…
Activities: 1h snow cycling and getting a car off out of the snow after work was good. Much too workaholic, but let’s see how I cope. No time for table tennis. But singing/production lesson.
Treatment: Breath-holding to prevent or reduce the brunt of the probable flare…

Hacks:
Tricks:
Pain: Evening: Pain’s OK as yet, but a feverishness I haven’t had since December is honing in, as in meme #85 - Pics & Memes that visualize our condition - #69 by JayCS. But I’m not going to dramatize, gonna take it step for step, enjoy what I’ve managed, keep calm. Mt 6,34.
Gut:

[JayCS]

2021-02-10, Wednesday - full work

Sleep: Nice ‘n’ long again! 9h15.
Nap: Nope…
Work: 8h10 again. I feel I need to get on top/ahead of things, now I’ve got the priorities right. But it was OK - still no flare. Various seating and lying positions on my sofa and the floor was better. Hmm. More self-control please!
Activities: Table tennis 6:4 (sneakily light wind).
Treatment: Hacks: Tricks: Not really. No ozone: still no buses running.
Pain: OK. Back Lying down to work was enough.
Gut: Strawberry yoghurt at midday, mushrooms heated seem a bit better, hope so.

[JayCS]

2021-02-11, Thursday

Sleep: Quite OK, 8h30, 2 longer breaks, but not out of control - cold shower at 1 was a good decision for the first one.
Nap: 0. Sh’d’ve.
Work: On early. 3h30. Want to keep on top, but remember self-control, so breaks.
Activities: Table tennis 5:1 (time limit). Cycling thru the snow still fun and no problem, I love the “rally(e) driving”, sliding to and fro in low gear with hands slightly loose but tough on the “wheel” (handlebar). But slipping up on front-door steps in the evening and falling on backside and back jolted me and my hands are now hurting a bit. Thank God my head didn’t hit the steps. (I’d been putting gravel on our own front door step every day, but somehow only realized that it was nec. at our - normally now pretty unused - church hall when it was too late - did it then of course.)
Treatment: Doing 2x1.5=3h/w of Acupressure/Physio is like 6x20’/d. I spose that shows how determined I am to get the upper hand here. Today she did my knees, breast, shoulders and upper arms for the first time since we started this in September - ouch! But a good pain. Afterwards I can stand straight with ease, but other parts are now hurting (lower back, knee, elbow), which’ll have to be brought into balance again on Monday, if nec. What continued most was the left elbow, which we haven’t got to anyway.
BTW going in cryotherapy is similar to going outside for 2-3 minutes without a jacket when it’s under freezing point: Really not that big a problem!
Tricks: Cold shower at night. Blood pressure shot up to 160/85 afterwards, but went down (120/85) quickly as soon as I was back in bed (110). My physio showed me 2 stretches for the tendons next to the inguinal canal (top of thighs at the front): They are normal, but as so often - with a twist: a) One leg stretched out quite some way backwards, one slightly bent. b) One leg standing straight, the other one pulled up to the backside with the hand. But in both a & b I have to twist the backward leg inwards to ‘get’ these tendons
Hacks: Just realized that the Charlie Chaplin/position one-twist makes me feel all-around “healthy”, no: “healthier”.
Pain: Wandering itchy pains all over from yesterday evening on, esp. at night. but OK, that wasn’t what stopped sleep… And feeling feverish quite a bit. What was the new thing I wanted to do for that? (Instead of fogging it over with cold water.) Ah, now I remember: sleep. Hmm, too late now. Sh’d’ve napped then. Yawning in flashes, sometimes once every 2 minutes, in the evening.
Gut: Burn from strawberry yoghurt was only yesterday afternoon, not at night, wind from the mushrooms was better, but uncomfortable, in the afternoon, evening and early night: hot water bottle . Tried one tomato in the evening…

Just reference

Sleep :
Nap :
Work :
Activities :
Treatment :
Hacks :
Tricks :
Pain :
Gut:

[JayCS]

2021-02-12, Friday - after slipping on streps, & workaholism: snow in the loft - so sleep all askew, still OK

Sleep: Good (4 breaks) and quite long (9h15).
Nap: 14:55- oh, darn… 10’. 18:55-20:15=1h25+10=1h35. Let’s see how I can go to bed later…O.o
Work: Top priority again, whenever I have time, coz treatment & activities are gonna take quite some time today. 4h30. 22:45-0h55! ->6h40. Crazy.
Activities: Table tennis, grandchild… Nope, neither: Trying to nap before that I remembered getting a text there’s snow in the loft over a flat I have to do with. Went there: 1.5h of shovelling snow and scratching ice together with someone else. Now I’m completely done. Nap?
Treatment: Ozone was OK.
Hacks:
Tricks: Used the inguinal leg stretches at a bus stop (I know no shame… ) Starting to twist-stretch every pain into oblivion: back cat/cow, thighs CC or use one leg to twist-stretch the other, neck diagonally up & down. Seems to be working - let’s see if these tricks will achieve hack-status…
Pain: Combined with the bedroom temperature cooling down yesterday evening’s jolt as turned into a yukky ache, not that strong, but not nice. Used a hot water bottle from 4 on to take the brunt, that was OK, but not enough. So further hot/cold might do the trick. Warily tried my 8’ back exercises on the warm bed first, as usual now with wide open window(s), today at -12°C - that was a good start, the warmth from the bed felt wonderful, the cold shock was a good contrast. Who’d’ve thought. Now a hot/cold shower might complete it. When turning over I realized even then I get pain in the tendons next to the inguinal canal, so the stretching tricks my physio showed me yesterday are something I’m gonna focus. Ache after unsnowing the loft went up to 5/6, so that trying stretches in the evening was difficult.
Gut: Yesterday evening’s tomato went well.

Just reference

Sleep :
Nap :
Work :
Activities :
Treatment :
Hacks :
Tricks :
Pain :
Gut:

[JayCS]

2021-02-13, Saturday - weird: much reduced sleep, but good day & still no sign of a flare - wary & ready to ‘come down’ to it (esp. napping), as soon as it makes it self noticed

Sleep: 1:43-6:40 - 1h? Didn’t I mean -25mins: 4h40? Wow! +1h35 (yesterday’s nap) = 6h15.
Nap: Nope, strangely enough. A small bout of tiredness at 10 & 17:00 wasn’t strong enough.
Work: Get workaholism (= also fun getting a handle on things) down slowly. Using temporary bookmarks in my browsers to switch tasks faster & marking things done clearer. Combining these by marking some of the bookmarks as done. 7:10-8:45. 8:55-9:05. 10:20-40 1h55. Wow 10’. 20:30-22:00 3h35.
Activities: Table tennis 8:2 better than ever, must be the cortisol/adrenaline
Treatment: Unnec.
Hacks:
Tricks: Twist-stretching, now every time a slight pain comes up, plus several minutes every hour. May look silly, but… Waiting all day for the fever to come on so I can go to sleep.
Pain: OK
Gut: OK, the tomato 48h ago might’ve given slight problems. Or it’s 70g of the strawberry yoghurt I had at midday, which’d be something new. The red cabbage midday is I think much less of a problem than the mushrooms the other day, I’d’ve thought the other way round.
Diagnoses: (I’m getting JAMA’s newsletter) Statins/Blood fats: New good meta-analysis on JAMA (“Time to Benefit” of Statins) suggests that it takes 2.5y!! to reap noticeable benefit from statins in older people (in only 1 in 100!!), so those with reduced life expectation w’d probably not! want to take them, seeing as they have short-term adverse effects. 2.5y for 1% does not motivate me that much to take them. But I spose I will continue all the same.

[JayCS]

2021-02-14, Sunday

Sleep: 22:20-08:35, 10h15-1h05=9h10, good, back into the sort-of-flow, altho it was hard deciding when to get up.
Nap: 0, not that tired.
Work: 9:05-50. “10:15”-12:05. 14:10-14:50. 16:20-17:15. 4h20… 18:20-20:20 +10 = 6h30.
This week 6h30+3h35+6h40+3h30+8h10+8h+5=41h05. Yes, I know, I’m sposed to be working about 20h/w. But I wanted to get the handle on it, and I’ve been doing far less since Christmas, apart from the first week of getting back, which was about 25h. Aiming for 25h next week.
Activities: Table tennis 7:3, went for a medium long snow walk, warm feet, cold arms (wrong hoodies)
Treatment: Neck exercises from the neck exercise classes again? So much energy etc., that I’m thinking it must be the ozone therapy too.
Hacks: Started putting my adjustable laptop-sofa-table up “too high” - much better for my back!
Tricks: Stretches all day, even when going for a walk help quickly.
Pain: Neck has been bad, disturbing sleep too.
Gut: Can’t’ve been the tomato, must’ve been the strawberry, b/c the sting is still there today.

[JayCS]

2021-02-15, Monday - Slippery day

Sleep: 22:35-7:00, 8h25-70=7h35. Not enough I’d’ve thought, but awake. Strange: still no sign of flaring. But I think it still means going to bed earlier again.
Nap: Before sliding to physio at 13:00? Not tired…
Work: 25’. Working standing, even 20’ is tough. 3h30: That’s a good, effective start to the week.
Activities: Blow drying my (long) hair is still very tough on my arms, after trying to work standing up. Table tennis early, before it’s too slippery: 7(9?):3 despite the hurting arms. Hurting even more after that tell physio.
Treatment: Tell physio: back, neck, sometimes left? elbow, right knee. Rest is better, seizure on Friday after stress. Arms & back today. OK: she did all of this with triggering, kneading, vibration and pneumatron. Left elbow hurt after, so she “spread the pain out” with acupressure.
Hacks:
Tricks: Stretch-sleeping in bed for back-ache worked. Extreme positions in which I can rest and alleviate. Right knee hurt for a short time tho.
Pain: Back ache from evening on, from sitting working too long - need to try standing more, so I’m now using 2 laptops, one for work at my bar table with bar stool, a new idea. This is normal ache I’d always had, long before fibro. I’d improved it with standing working, then came fibro…
After physio my left elbow is hurting again, hand exercises are tough, hurting more… Leg stretches are also tough. Have to dig out my mantra of doing things very short again, no more than 20’’…
Gut: 0:30 Heartburn. Why? - Eating late at 20:30? Or the strawberry yoghurt Saturday at 13:00? Tried a homeopathic med (Gastricumeel), without alcohol: worked . Burning stomach 4 hours after eating 3 warm potatoes, everything else as normal… Hmm… Try it again. Plus Gastritol plus hot water bottle and eating a little bit: Then fairly OK. 19:00: colon-end-pain grrr… now how can that be the potatoes, what is it? Saturday’s strawberries? 54h later?!

[JayCS]

2021-02-16, Tuesday - breaking down

Sleep: 21:35-6:55 -15=9h15. Changing the standard sleep time down to 9h again. Average last week was 8.5h, but as it was enough to keep the motor running I won’t insist on 10h any more, that was a test anyway and it was good for a time, but napping as needed seems more effective. Bit hungry in between from a bit more menthol for my nose. Soy drink was enough to ease it. Fingers hurt upon waking, quite a few single pains, but fairly full energy as always now, and twist-stretching sh’d do the trick.
Nap: 18:30-19h45=1h15 cos of sleepy feverishness at 17:00 puzzling with granddaughter. I’ll try not to go to bed at 2 like last time… 22:00 strange feeling, not tired not awake, body uneasy. 22:40 Ah, feverish again: Off to bed!
Work: Trying to get it more effective. 8:55-10:55. Switching between standing & half-sitting non-stop has given me myofascial pains and ache in my back, arms and thighs. 11:00-12:05. Table tennis? Helped! 12:55-14:10 lying down & sitting. 15’. = 4h35.
Activities: Table tennis slushy 4:2. Singing AND granddaughter?.. Putting singing off to Friday. Cycling thru slushy wood was fun, but strenuous. Not much harder than to therapy, but a bit longer. Not sure what’s made me so tired: Lots of sleep, didn’t do too much, everything fitted…
Treatment:
Hacks:
Tricks: I’m getting better at switching from standing to half-sitting is improving, using my laptop ping-alarms. But I still have to improve switching to sitting and lying down.
Pain: Single muscle pains and stiff finger pains need twist-stretching. Right thumb root, praps from slush-cycling. After nap uneasy, unrest everywhere, feel like continually twist-stretching, which I was then doing.
Gut: Colon-end-pain was OK in bed, otherwise I’d’ve put a cushion between my legs again. Then: just yesterday’s droppings. Tried 40g strawberry yoghurt again, yumm…

[JayCS]

2021-02-17, Wednesday - flare from ?standing working and or short sleep Sa+Mo+Wd

Sleep: 22:45-6:30-1h10=6h35, + y’s nap 1h20 = 7h55… Interesting despite going to sleep earlier after the evening nap, I was awake once at night and also wide awake early. Like last time: An evening nap when I need it seems to make sleep more effective.
Nap: Itchy eyes, but not feverish: 17h45-18h35: 55’. OK. But feverish at 19:30. Hmm.
Work: 5h. 18h55-20:35… 1h40 = 6h40 (This week 14h30 up to now. May be a bit too much, but as yet much better than last)
Activities: Grocery OK first… Table tennis 3:7 & very kaput(t). Well that doesn’t make the ozone look good…
Treatment: Ozone - felt sort of great afterwards (a bit weird tho) first, despite having had to run quite a bit in between, cos I confused the bus number. But after grocery shopping that quickly went down and work did the rest.
Hacks: 1st position is good when lying (front down) or sitting down stretched out, but hard to stand in and then turn outward enough, so I often need a hold. But 4th position is better. p-pain: Just sitting very upright is praps more comfy & natural than leaning backwards, which isn’t even always possible.
Tricks: Quite a bit.
Pain: Torso after working 2h standing, half-sitting, sitting (praps not switching often enough). Tried similar again, altho table tennis was hard already. Not good, not good at all.
Possible Reasons for the pain-flare a) suddenly warm weather, b) tired out yesterday evening, c) slept too little Saturday Monday and today d) ran for the bus, e) working standing up. None of them fit, apart from the last. Better working sitting down. 21:00 even jaw/tooth is hurting again.
Gut: I think I can feel the strawberry yoghurt, altho no direct burn, more indirect. And burning/ hungriness in the early morning, making me need to eat. Ate the last 30g today…

[JayCS]

2021-02-18, Thursday, still flaring

Sleep: 21:30-6:40, 9h10-1h40, +55’ nap yesterday: 8h25.
Nap: 0
Work: 7:55-25-11:50: 3h30. But really hard again, despite resorting to sitting & lying down after a while. Not realizing what is taking how long I’m gonna divide up the work-areas (R8, R7, E, B). R.1h40. 19:30-21:30 E 6h10.
Activities: Table tennis 6:0, but the last game was a bit too much, so: good I realized from the beginning to pace it. Probably a further problem yesterday then too. Need to work a bit more, to get back on top. But Triggerpointing and table tennis got my mood & body back up.
Treatment: Trigger pointing got the flare-up down again.
Hacks: The 4th position ballet leg stretch standing I’ve been doing now can also be done as 5th position when lying down (feet outwards, strictly over one another). Arms upwards outwards I’ve seen called “open fifth”, but not regularly. Downwards outwards is caricature used for funny or tragicomical characters, puppets like Petrushka.

- YouTube

Tricks:
Pain: Flared, hurting all over till physio.
Gut: OK, now the strawberry traces are out of the system.

Just reference

2021-02-19, Friday

Sleep :
Nap :
Work :
Activities :
Treatment :
Hacks :
Tricks :
Pain :
Gut:
Diagnoses:

[JayCS]

2021-02-19, Friday - best sleep ever, flare-up coming down

Sleep : 21:45-7:05-10’!=9h20
Nap: 0
Work : 8:00-E-10-10:50=2h40, 12:05-(E)-14:20 = 2h15, sitting & lying down is OK. 15:10-E-15:30=20’, 17:10- P-19:50=2h40. Friday: 7h55. (This week 28h35.)
Activities : Singing was OK, but strenuous, sitting & lying down best there too. Table tennis 7:1 with a 4’ break after 5:1, sh’d’ve stopped there tho. Something I didn’t used to do, but with the experience of the pacing since December I sense it was always too much. That also means I wasn’t even managing 4 games in Nov/Dec. I’m probably only managing more now, because I’m in “hoffice”.
Treatment: 0
Hacks: Applying “open 5th position” is working, seems much more effective doing that for 30’’ than 5mins of yoga/back ex. Adapting it further, by leaning forward & back & twisting torso.
Tricks:
Pain: Back, but better than everything hurting like when I’m standing up… I maybe sh’d target how many minutes - or seconds? - of standing is OK. My jaw-muscle is firing. Not managing to hypno-relax enough in certain situations.
Gut: Good.
Diagnoses: Haven’t managed to find out how to get an appt to the new endocrinologists - their phone-answering machine and website have me stumped as yet.

[JayCS]

2021-02-20, Saturday

Sleep : 22:25-7:00 8h35-20=8h15 Again not up much. Both nights almost no need to p, maybe drank less, warmer air? Not measurable, but wearing less, feeling warmer - warmer weather but not warmer air, free nose. Week tally: -2h45, avg. of 8h35.
Nap: 16:55-18:35= 1h40.
Work:

6h05/d ->34h40/w

7:20-7:30 E. 7:55-R7-8:30-En-8:35-R7-8:40. 8:45-R7-55-E-9:05-R8-9:10-R7-9:25. 9:30-R-9:40. 9:55-E-10:40. 10:40-P-11:05. Break. 11:15-E-11:35. 10’? 13:30-R8-45. 15:15-R8-16:40. 18:45-R-19:15 10’ R7:20’ = E: 1h50 R7: 1h25 R8: 2h25 P 25 =

Activities: Table tennis 5:1, but c’dn’t get my muscles downregulated the first 4 games, had them down for the last two, 2:0, but that was too late, so got to be careful now. Relax!!
Treatment:
Hacks:
Tricks:
Pain: Bit back hard cushion for kyphosis Left jaw hurts strongly again again, eating, cold: relax “5 levels down”. I am pretty relaxed, but my face may a bit taut off and on. And it feels OK inside, but when I go down and down, I can relax the muscles more and more and thus influence the pain. Tried trigger pointing too, helped a little.
Gut: Bit hungry before getting up.

Just reference

2021-02-20, Saturday

Sleep :
Nap :
Work :
Activities :
Treatment :
Hacks :
Tricks :
Pain :
Gut:
Diagnoses:

[JayCS]

2021-02-21, Sunday

Sleep : 23:25 0:45.6.30’ 4:15p (have to actively relax jaw all the time)j 6:10dry mouth/cough 7:20w/n->hungry35’ -9:10 (stretch-dozing) = 9h45-1h15=8h30, +y’s nap 1h40 = 10h10
Nap: 0
Work:

2h05/d ->36h45/w. Still far too much, still high priority to do that first, but to try making it more effective or cut it down.

9:25-E-10-15-10:20-R8-10:40. =50’ 11:10-all-11:40.=30’ 5’all. 20’R8. 5’E +15’? = 2h05/d ->36h45/w"

Activities: Table tennis 2:0, then 2:4, more w’d’ve been too much. Successfully kept the muscle tension down.
Hacks: If I can stretch-doze, why not try stretch-standing & stretch-sitting while working? First tries are pretty good, when I stretch my legs outwards, my back automatically bends backwards. Stopping & starting regularly c’d be a problem. Still seems OK
Pain: Lots of leg & arm stretching helped, but was nec.
Gut: colon-end-sting again after a ready-made salad yesterday with 1/2 tomato - nightshade as some w’d say; but peppers seem OK for me, and few enough things I do tolerate. Wondering if I can prevent the sting with creaming, before it ‘comes out’. Fresh vs. cooked might be interesting to look into.
Sudden nauseating gut-pain at 14:30, after lunch -what!? Not new, had it before. The only ‘new’ thing I ate was tofu the first time in a month. 100g midday and 50g in the evening. Only short; then evening wind 3x.