JayCS’s Fibro Blog

Day 13 of working again, Saturday - more self-discipline at night!..

Unrest from 2-4. Tried all tricks - exercises in head, breathing, twisting, doing real exercises: no help. So only a longer 1h-break did the trick. Cold showering wd’ve been similarly effective, but I’m trying to find alternatives and that break was OK for me. If I’d’ve needed a 2nd one, I’d’ve cold showered. This again shows that neither acupressure nor ozone is helping here yet. In the break I looked up (Levodopa + (non-US )Benserazide) for RLS which my rehab-psychiatrist prescribed and decided there are way too many adverse effects similar to amitriptyline, to which I prefer the restlessness by far. Only thing I’m still thinking about is taking an extremely small dose, something I shd maybe’ve thought about with other meds, but then I never really wanted to take any of them, so I’m glad they didn’t work out that way.

Restex

Levodopa or L-dopa increases dopamin. Benserazide prevents this happening outside the brain, reducing side effects like nausea.

Main pains at night at the moment are both elbows and wrists, use arnica cream on there. Seems to have got more regular since the RESET-treatment on Monday, but the main problem is cocking the elbows for a good sleep position.
Not quite 10h sleep tonight, but an avg of 9h50 this week. Let’s see if energy remains…
Activities: Table tennis 8x, won 7, so: Yes, the energy is back. Despite wearing a mask for most of the time. I think more sleep and reduced work this week helped. - Went on to get groceries after, which was a bit too much, but a half hour break did the trick.
Then we met 2 others at the grave of lost friend and talked quite a lot, way over an hour in the cold, doing yoga to keep warm, plus cycling 20mins there and back, and that was just too much, even resting an hour with an electric blanket was enough. Not pain, just tired, fatigue, feverish.
Just stumbled upon a great, fast paced, and humorous “crash course” on managing fibromyalgia, a 40’-“master class” on youtube by a fibromite, Rachel Lynch of FibroIreland, from 2018. If it’s too fast for you, put the speed on 0,75. :

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Day 14 of working again, Sunday - self-discipline at night, still tired at day :-/

Sleep: 9:10-8:30: 11h20-55=10h25. New tricks: After trying my super-twists to save doing exercises for my lower back, I used the cobra-position for 2mins, only in early morning did I have to take a “rest from sleeping”.
Answering Napping turns into 3-4 hours of sleeping. Does this happen with you too?, I reflected: My average sleep had increased from 8.5 to 9h/n, but working 15h/w still took my energy down to 50%*, which came back to 90% for 3 weeks in the prolonged Christmas break. Now in home office I’m trying to keep the energy up by sleeping 10h/n, which is working, and my energy is higher, but I still often get very tired. Since I need from about 9-9 to get the 10h of sleep this is only possible in home office. Now I’m trying to get the breaks at night down so I can get up at or before 8. And wondering whether the long sleeping is worth it - but at the moment I’m thinking having energy is more important than feeling awake…
(*Is it true that my energy was down to 50%?)
Activities: Singing 1.5h good, but tiring. Table tennis 7x, good compromise, pretty much with energy, despite tiredness. Video church services involved peopling/socializing again. like yesterday, that was pretty tough, had to take breaks.
Work: OK, pretty unmotivated tho, having trouble focusing, after I lost the good ideas a few nights ago, bc I didn’t want to get up to write them down.
Pain: Quite OK, tiredness (yawning a lot this last week) & sort of exhaustion, but didn’t have to rest after table tennis. Wondering whether I’m resting too much or “wrongly”. But at least I’m avoiding flaring, by doing the least necessary.
The tooth/jaw pain has continually decreased in this week after the RESET-treatment on Monday, but energy & arms have also needed a longer time to recover, only the breath was better the last few days.
Gut: Good, despite bloaty foods again (psyllium to be safe, helped I think).

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Thank you so much JayCS for this video managing fibro. Very interesting. First time ever that fibro has been really spelt out in this way. I am very much on my own regards this illness. Rhematologist said I have got this illness learn to cope with it and has refused to see me. My GP said he is unable to help me. I dont think he knows anything about fibro. It is not so easy in England to change Rhematologist as you have to go through your GP to get a referal. The surgery I am at now are really lovely people so I would not want to change to another practice.

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Day 15 of working again, Monday - self-discipline at night, but long dozing :-/ plus SHOCK :scream:

Sleep 9:25-8:30, 11h05-1h10=9h55, dozed quite a bit, tho. Problem was getting to sleep again after having written something down for work out of fear of forgetting it again this time.
Work Online was good, going there in the afternoon too. The SHOCK :scream: was getting a mail that I would have to be at work before 8 on Thursdays after the lockdown, means getting up at 6:30, 2-3 hours earlier. Wondering whether to wait and think about it before I react, I decided that that was wrong last time, so I answered saying I don’t see any possibility of managing that. When I went there (for another reason), my boss took me aside and said: There isn’t any possibility of them changing it (which I understand), suggesting I take a taxi instead of bike & train, to save 30 mins and suggested that I may have to then consider early retirement. Which is true, but I think too early. It’s just I was sure they’d be able to make allowance for me being severely disabled and in occupational rehab to not have to come that early… In the talk she also said she’d think about it, the idea that I’d compensate for the 30-60’ in home office isn’t completely off the stove yet, something I’d suggested in my answer. I replied I’ll be thinking about tweaking my sleep further. My wife very much dislikes the idea of me going to bed at 7. A bit feverish on the way home at 7, and fairly tired, but OK.
Activities I meant to compensate for lack of table tennis with a workout but the shock stopped that.
Treatment TCM/acupressure - this time (again) with a metal gadget that turns on your skin and causes great pain at bumpy and rough parts which show the muscles / fascies / tissue aren’t OK. Felt much better all over afterwards, except arms, which she hadn’t worked on, ‘just’ legs inside and out, belly, neck and shoulders.
Pain: Quite OK. Stil hardly any tooth/jaw problems. Energy & breath good.
Gut: Good, despite not eating enough at midday (which often happens, lack of self-discipline there).

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Day 16 of working again, Tuesday - slept better

Sleep 9:20-7:55, 10h35-30=10h05. One idea I’m thinking about is how @Polkadotbeans_fibro sleeps 3-4h in the afternoon and 7h at night. That’d let my wife have her peace in the afternoons after work and leave us time in the evenings. Altho - I have to get up earlier first… See if it works. I’d have to see where I fit acupressure in, which is at 1-3 2x, let alone ozone and then acupuncture 2h, up to now in the mornings… Another is this experience again last night: going to work leads to sleeping thru better! (Despite the shock.) Now I’ve immediately tried out the nap/sleep idea at 3, needed 20’ to get to sleep, then pretty deep sleep, 45’ altogether, “rude” waking, feverish, but fit after. Hmm, let’s see what the night’s like now.
Work “Lazy”, somehow it just feels too much, but it isn’t really, I’m where I shd be.
Activities table tennis 3:3, Ache, but quickly OK after, without special treatment. Singing and preparing for it was good. Short phone call, short cycle-walk with my wife and then walk with a good old friend. But the walk was too much, shd’ve taken the bike.
Treatment ozone #5. OK. The headache on Friday might have come from it, she says. Drink more.
Pain: Quite OK.
Gut: Good.
Not getting enough done, I feel. Have to reduce/postpone less important things…But actually - there’s not any real pressure. Like at work, everything’s flowing quite OK. So “not getting enough done” = “resting & enjoying myself enough”! :smirk_cat:

Why have I always felt feverish after an afternoon nap or getting up at night, long before fibro…? - This is the same feverish-feeling I have when overdoing it… Not hot or cold, sort of hot-cold at the same time, mainly in the arms, but also legs and face (I think)

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Day 17 of working again, Wednesday - good sleep, nap & pico-yoga… :partying_face:

Sleep: Wow, after napping 45’ yesterday I only had 3 sleep breaks tonight, and could get up at 6. Howzat for a quick solution. Let’s see if it’s just chance!
And quite a few other new ideas which work for me…:

Work: I’ve earned allowing myself to procrastinate again. Working only “just in time”. :smirk_cat:
Whoops, suddenly got in the mood to… :grin:
Activities: Table tennis lost 1:3, but energy was good… Middle back is a bit daft after having stood the whole morning, which is quite understandable. Sweated a lot, altho it’s snowy - very abnormal nowadays (I mean the sweating :-). Used to be normal, and came back after TCM/acupressure targetted it). Thinking about going to grandchild, but sleep’ll come first… And I really am dead tired, wd’ve normally ignored it, but maybe that’s my future…
Treatment: Only the anti-stiffness-stuff. But what effect! I was walking smoothly with energy and without stiffness in the grocery store - Combination of sleep & pico-yoga?
Pain: Quite good, not lying down much, standing at my standing table, but moving quite a bit. Shd do more real yoga instead of stints of my pico-yoga (Better sleep - 30 wakers & stoppers - #2 by JayCS) in between. :wink:
Gut: Good.

Man JayCS, I’m never playing table tennis with you! You would probably hit the ball so hard that it would put a hole right through the paddle! :ping_pong::astonished:

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Day 18 of working again, Thursday - unrestful sleep, but pico-yoga is still the stiffness-hack, & more coming

Sleep: Might’ve been OK, but cdn’t get the unrest away after my wife’d been with me which made me take in a sleep position which I cdn’t get rid of quickly… so got up too long and had hours of dozing to try to get back… but got up at 7 at least (6 is the aim) with a tally of 9h10 (incl. the dozing, as ever).
Afternoon nap today only took 30’…
Treament: OK, pico-yoga or harlequin-dance? or in-out-twist? Whatever, it’s helping before getting up, it’s making me a little less stiff altogether, praps that can lead to more energy, after washing my hair to the front, I did a back bend, any tendon-stiffness I feel I now immediately look for an anti-twist that will take it.
Activities Got lots to do today, work, table tennis, GP, acupressure, sleep, oh dear, and I’m not really on my way… Ah, it worked out, focus on work. Rain prevented table tennis & grandchild. Nap was short, so I suddenly had lots of time, enough for everything.
Treatment: Trigger pointing on my arms, pneumoatron on my back: Good, just a bit left in arms and nape of neck, but feels great for a start.
Looking for gifs that demonstrate my new in-out-twist, may be a yoga position I don’t know yet. It’s combined with one that’s called “blade” in my yoga book, but I also can’t find it on the web, so it’s probably different in English.

These are similar movements… but what I mean is both feet/legs and both arms outwards at the same time, plus inwards… and only 5-10 seconds… it’s still doing the trick…
Twist hugh-grant-love-actually-dance Twist PeacefulClumsyHarlequinbug
This is the movement I’ll be aiming at next… :rofl:
Inward twist kick tutorial youtube

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LOLOLOLOLOLOLOLOLOLOL!!!ROFL!!!HAHAHAHAHAHAH!!!
Whew! I needed that! You can’t look at those video clips without smiling :laughing:
Thanks, JCS!!!
Daughter is going through about her 7th breakup with this guy and hubby is anxious from worrying over her and I’m anxious from worrying over hubby…Will this NEVER end? I’ve told him I will NOT become as emotional over it this time, and I WON’T. Will I be supportive - YES. But make myself sick (or sick-er) - NO. (Just thought I’d share why the smile you gave meant so much today.) :upside_down_face:

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Day 19 of working again, Friday - not quite enough sleep?

Sleep: Well after only 30’ yesterday afternoon, I again only got 8h45 tonight, so 9h15, bc I got up a bit earlier again so it can fall into the new rhythm easier, if it is able to at all. Felt squeamy & hungry from about 4 on, a hot water bottle helped, I think it’s the gut, and it’s relieved now. Or is it from sleeping less? Or rainy weather? - but I can’t influence that (much*) anyway (* by changing tricks). At least today is warm shower day, to not spoil yesterday’s trigger pointing.
Work: Yesterday I got a letter saying I’ll have to get checked by my public health officer if I really am fit for work, seeing as my rehab-doc has put/left the rehab down on 40% for further 3 months. He’s always been on my side, but I need to give him good ideas how he explain to my employer why he doesn’t have to doubt my fitness. To gain time I will this time not contact him myself, like I did the last 2 times, maybe he’ll do something similar, who knows. Then I will argue that I’m now feeling much better now altho working more, than in Nov/Dec when I had to go to work more, first due to home office and not having to wear a mask, 2nd because I had more energy via more sleep over the break, which I’m managing to harness now, also via sleep, treatments and tricks. Now I just need more time for new treatments to work, and to play for time for mask-time to be reduced or removed, plus the summer-warmth, plus cryotherapy helping more in the summer, plus 3-4 new treatments helping more. Also I’m thinking I could find a way to work differently, using the experience of home office: Talking a lot less at work. I’ve done that once before, because the people I was talking could concentrate better, so I have a repertoire of techniques from the past. Also quite a few people prefer not talking so much, it’s just hard to get the Schnabbelschnuten to keep their mouths shut (can’t find a translation for that cute one :laughing: ), but as I said I know how to do that.
Nap: Nap-length & deepness cd be influenced by what time I start and what I do before. Wednesday I slept long, it was 1. when later it was shorter. And I do get tired by 1, like @Polkadotbeans_fibro. But now, after table tennis I’m tired too, let’s see, altho it’s 4! - yup, over an hour, that seems fitting. Didn’t feel like sleep, but I felt better for it and was feverish-tired before. Perhaps I should take a nap every time I feel feverish, seeing as that traditionally has meant I am tired…?

Activities: Yesterday worked out well: Rain called table tennis and grandchild off (again didn’t manage workout instead :frowning: ), the doc’s office was too full, so I’m checking there every day now (3 mins. to get there). So everything worked out well and I cd develop a few new ideas for work.
Table tennis: Won 6:2, Ache after the 7th game. Let’s see what a nap will do.

Treatment: Realized that leaving my laptop at home helps darting to the bus if nec. And I always have enough to do in my pda, bc I (can) usually ignore it now, self-discipline for the important things is working, and this blog helps too. Also just realized that doing my out-in-twist also works great before going up any stairs. Ozone was OK, took a bit long, but no problem. Took the time till the next bus to have a chat with another patient who had asked the medic if sore eyes and dry mouth can come from meds - she meant blood pressure meds, it turns out - which made me think about how to reduce my 5 cardiovascular meds more and that at least I have less headaches now I’ve one pill less. I told her about sicca & that I think my blood pressure meds aren’t a problem. Just looked up that beta blocker and ACE-inhibitors do. As far as I can see, mine can be combined with the latter, but aren’t them themselves. However, one of mine, lercanidipine, can cause a lot, of which I have tiredness, diarrhea, gut problems, muscle pain, more urine, exhaustibility (and the occasional headache), whilst the other is OK. Enough having to take a statine, I want out… :pouting_cat: :smirk_cat: I think I’m gonna take the herbal one I’ve got again (roseroot) and try to take it down further, so I can get away from more of 'em…

Tricks, no: Hacks Difficulty sitting at the table :arrow_forward: did the cat/cow-back exercise: :white_check_mark: All others are still working fabulously, esp. the Simultaneous Double (Leg) Twist (as said above: helps before going up stairs). (My mother does yoga, but doesn’t know this as a yoga exercise.) Just realized what I do to decrease p-pain is the cat exercise (rounding back).

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Day 20 of working again, Saturday - A week of naps, slightly less sleep, still energy

Sleep: While I didn’t manage getting to bed 9 this week and often forgot back exercises before, so yukky lower back sometimes, napping’s been OK, and I’ve managed an avg. of 9h40, in the napping part of the week 9h20, altho getting up earlier.
Nap : 2, 40’, end with long tremor in right hand (seizure-style?) and slight headache (blood pressure? 124/62 71, wanted to cold shower after anyway…). If that was seizures-related, then it’d mean that the RESET-therapy Monday before last didn’t help, bc that’s what it targeted at. Cold shower got rid of the headache.
Work : Looking forward to it today. But first writing. OK, work didn’t work…
Activities: Table tennis 4:4, used too much energy, so decreased, no breakdown, but OK,
1h walk/me on bike with a friend, very cold, then short meet/eat. Song writing.
Treatment: Nothing apart from a bit of twisting… :
Hacks: Realized I’ve been doing the arm & leg twisting singly a lot of the time at table tennis, but not together and not yet before getting up to prevent stiffness. The latter I did only in the mornings, doing back exercises, as @AussieMom thankfully pointed out. Feel I haven’t put my point across enough to others that this new kind of double-twist has another quality?

Started getting tired & feverish at 7, managed to go to bed before 9, when I’d gotten very feverish - but if I start trying consequently to sleep whenever getting tired or feverish, - wd I’ve had to go to bed at 7 or 8, then??

Day 21 of working again, Sunday - idea/inspiration overload

Sleep: Tonight I had lots of ideas, luckily I’d tried placing my pda next to my bed instead of banning it, so I cd write them down or record them instead of implementng them and getting out of my sleep-drowse-state. Also got hungry, due more to not eating enough than to using :arrow_forward: essential oils to keep my nose free :white_check_mark:. And like regularly use :arrow_forward: 2 tops over my t-shirt in case I get too cold at night :white_check_mark:

  • 3 ideas I’ve put under ‘hacks’.
  • joking - for forum-use: my fibro-misses -Mrs(.) -mams, -mums, vs. my fibro-mates (spoaken wiv moy broudest ‘arlow Coackney accen’ so it sounds like ‘fibromites’)
  • trill-idea and slightly displacing the bass for the song I’m working on.
  • is the cortex in my speech centre which is not only causing the occasional focal seizures, but has blessed me with becoming perfectly bilingual and someone who sometimes has difficulty thinking straight ahead, but also giving me inspirations, creative/lateral thinking, thinking outside the box, taking the red pill which helps me find out about the illusion provided by the Matrix. Phrase reminding of Uri Geller: Do not think it is the spoon that bends… that is impossible. Rather think: “You are the spoon!” Also making me long-winded…

Nap: As soon as I get feverish…? There’s a few things making the naps hard: What I usually do at that time, like acupressure 2x/w 1-3. Mme Army Boots above me throwing things on the floor and stamping around… So apart from ear plugs I have to :arrow_forward: put my top duvet double over my ear. :white_check_mark: Ideas in my head resulting from what I’ve just been doing all morning, work or play. But still been quite good.
1h good sleep at 3, after table tennis, altho I was tired at 2 starting out for it.
Tired again at 7.

Work: :soon: well no, too much very necessary :wink: fibro-research…

Activities: Song :studio_microphone:, Table tennis 4:2, no problems :ping_pong: & service :church:

Treatment: None. Stood too long, was OK. 10x1’ yoga for my back. It’s weeks since I’ve done breath-holding, one cold shower a day is enough, energy is still there for table tennis and cycling.

Hacks:

  • further developed the double twist for use without energy: :arrow_forward: Lie on front, twist head on way, the other leg and arm the other, then use the weight of the unused leg on the other’s heel to twist it further without energy. :white_check_mark:
  • added a few ideas to ‘yesterday’ about the double twisting.
  • also realized that my back exercises stretch my leg-muscles, but not as well or as quickly as the double twisting. Also of course I can do the double twisting for 6’’ every time I get up at night, without waking me up much (does a bit, but at the same time increases stability & speed getting out and back). So they are by far not as handy. OTOH they of course don’t do enough for my back. cat/cow lying down is a quick help for night, as I’ve said.
  • If I forget my back exercises before sleeping, it’s important to :arrow_forward: do the halved version the first time I wake up :white_check_mark:, because the lower back often becomes a problem by then (halved: everything 4x4, instead of 2x4x4, I’m a musician, so I “count”/feel in rhythm).

Apart from men-memes Pics & Memes that visualize our condition - #54 by JayCS
I looked for new studies on fibro (Review Jan 2021: No effectiveness proven for most therapies for fibromyalgia)
esp. the lessening gender difference claimed in the wikipedias… Males - My Fibro-mates :-) - ratio, differences etc and
symptom differences Males - My Fibro-mates :-) - ratio, differences etc - #2 by JayCS

Considerable pain after holding in too long…

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2021-02-01, Day 22 of working again, Monday - getting places, hardly needing rest

Sleep : 10-7:10 = 9h10-1h, +15:20-16:20 yesterday = +1h, 9h10. Good!

  • Sleeping when I’m tired/feverish more and not more/longer feels like quality and more natural. In the bathroom sleep break at 6:50 I was very tired, but sleeping again I was soon awake again at 7:10 and felt it was right to get up then, which was no problem, I felt awake & with energy. Dozing till I got the 10h together w’d’ve been too much.
  • Going to bed late & being up for 45’ once was caused by my research-hyperactive-flash, & worth it.
  • Strangely I got to sleep very quickly after each break, even the 45’ one. 3 possible causes: :one: I’m concentrating on relaxing my jaw every time, superseding my kite-flying-image, then autogenic training :question: :two: My sleep-rhythm is more natural (for me!):question: :three: The blood-ozone-enrichening :question:
  • My tooth-jaw-muscle ached a few times again, like yesterday (that’s why relaxing was perfect). And my right thigh hurt about 6x, left one praps 1x, about in the, fairly close to the bone was the main pain point. Both is something for acupressure later on, RESET for the “tooth” & pneumatron or the vibration gadget for the thighs. I’m wondering what it is that’s got the thighs going again. :one: I didn’t rest once yesterday, sat twisting on my bar stool :question: Looking there now, the bar stool ends a bit above the pain areas, but the edge of it is under the legs, not to the side, like the pain. :two: Mattress :question: But I still have the lambskin under my thighs in bed, which compensates for the hollow in my straw mattress which still has the soft topper on it. And I’d several times tried sleeping on my wife’s softer mattresses, which didn’t make a difference… :three: Or just plain lying down :question: Don’t think my acupressurist can help, otherwise she’d’ve suggested something before, but we are often in a dialogue, maybe she’s never thought about that :grey_question:
    Aside: Witnessed a wonderful scene together yesterday - a (red) squirrel found my white lambskin lying on a balcony chair directly in front of the balcony door, and seemed to enjoy it, whilst looking for the food / rests we put out for birds and them. It looked straight at us, a bit cheeky. We preferred to enjoy the moment, rather than capture it. Before it started away, faster even than me, when I’m not stiff. :smirk_cat: Looked “at us” exactly like this, very red, very white, long ears, black shiny eyes, praps a bit bigger eyes:
    Red squirrel in snow

Nap: 'd have to be after 3. Table tennis. Wasn’t tired after either. Still not that tired at 7, so worked out well.
Work: 2 days off for everyone, so I’ll be able to catch up on what I was going to do yesterday.
Activities : Black ice… be carefulllll with that… Table tennis 6:2
Treatment: Trigger pointing centred on the thighs (& backside), pneumatron on my back & thighs. My legs felt so oiled that that they seemed to running in front of me, sliding away. Unfortunately while playing table tennis they after-hurt quite strongly, left and right.
Hacks:…

Side-note at 8: My wife suggested taking a weekly ‘dialogue’-time again (6x15’ monologues in which each describes their soul landscape to the significant other), which I think is great.
Side-note 9-11: Black ice, everyone’s slip-sliding all over the place, bike and electric scooter slip-overs in front of our houses every 20 mins, no-one seems too hurt yet, sirens non-stop. I’ve scattered granulated lava stone (environmentally safe) on the pavement in front of our houses (which I’ll sweep back together again and collect afterwards.) Hmm, how’m I gonna get to acupressure - my mate suggests calling a taxi. I’ll wait till 2 hours ahead. Praps the communal gritters’ll’ve got thru everywhere by then. Reminds me of the double muscle rupture I got 3 years ago by slipping over 3x on my bike. Don’t need that again.

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Yikes! Be careful out there with the black ice - That’s never fun! I love the squirrel pic, JSC, and that you take time to enjoy life’s simple (and sweetest) pleasures! :star_struck:

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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: :bangbang: QUITE GOOD all the time… sorry about that… :blush:

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! :exploding_head: :scream:
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 :arrow_forward: 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.

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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 :bangbang: I’m hot & awake at night I’ll try :arrow_forward: 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.

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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… :frowning: 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:

Why doesn’t it look as cute when I do it?? :blush: 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 :one: 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), :two: I have dry skin, but never colouring (red, silver or grey), quite often strep throat (Marigold essence) :three: 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; :four: lower back pain, but no spondylitis in MRI, :five: itchy eyes sometimes, but otherwise perfect, :six: exhaustibility, a sort of fatigue, but energy too; :seven: no family members with any of this, :eight: no HLA-B27; :nine: no reduced iron; :ten: 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.
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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.

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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…