Summary AND Tuesday night:
2023-06-13/14 Tuesday night (CHANGING ENTRIES FROM NIGHT/DAY TO DAY/NIGHT, so that I can finish the entry in morning daylight instead of sleeping time. I do “unblue” my laptop at night, but who knows. Also I get distracted and out of sync. My reason for putting the night before the day was because how I sleep influences the daytime more than the other way. Also because writing a diary is something people usually do “at the end of the day”. But it’s more practical & healthy keeping it the other way round.)
SLEEP (click for details): 6h57, up 4x (1h30), most deep. Had forgotten A2+A3-GABA again, put a reminder in my A4-A8-box now. ✅ ➔ Feeling 80/70/60% well, Ache 2 of 7 ❌, getting up: 60%/2 for about an hour, then better, after moving, supps, cold showering ❌, what the heck is this sinus headache, it seems different to what everyone else has, like migraines. Nostrils 5% stuffy 100% of the night ✅. No sweating ✅.
rup0.2mg A3 A4:0 teeth0 p0 HWB#0 Sleep 22:45- 3rd # is LBU
0:00 41’ 80%/2/15% p0 st3 sip fw2’ fl35’ deep/ air/ A4/ plugs0 cream0 gel0 HWB#(0) Bedclothes: wet0% teeth0 FA/CS#0
(nostril/s5/0% sinuses0% headache0% sore throat20% nausea0% stomach0% tongue5% stools0 loose0% kg drymouth 30% dryhands 20% zombie10% stings50%
1:10 35’ 6 80%/2/15% p0 st3 sip fw2’ fl5’ deep/ air/ A5:0 plugs0 cream0 gel0 HWB#(0) Bedclothes: wet0% teeth0 FA/CS#0
(nostril/s5/0% sinuses0% headache0% sore throat20% nausea0% stomach0% tongue5% stools0 loose% kg drymouth 30% dryhands 20% zombie10% stings50%
4:06 8’ 60%/2/15% p0 st2 sip fw4’ fl0’ deep/ air/ A5 plugs0 cream0 gel0 HWB#(0) Bedclothes: wet0% teeth0 FA/CS#0
(nostril/s5/0% sinuses0% headache0% sore throat30% nausea40% stomach30% tongue15% stools0 loose% kg drymouth 30% dryhands 20% zombie10% stings50%
5:45 6’ 70%/2/15% p0 st2 sip fw2’ fl0 deep/ air/ A6 (as forgotten A2+A3-GABA again!) plugs0 cream0 gel0 HWB#(0) Bedclothes: wet0% teeth0 FA/CS#0
(nostril/s0/5% sinuses0% headache0% sore throat15’ nausea0->40% stomach0->30% tongue15% stools0 loose% kg drymouth 30% dryhands 20% zombie10% stings30%
-7:12 60%/2/15% p0 st2 sip fw2’ fl0 deep/ air/ A7:0 plugs0 cream0 gel0 HWB#(0) Bedclothes: wet0% teeth0 FA/CS#0
(nostril/s0/5% sinuses0->30% headache0->30% sore throat15’ nausea0->0% stomach0->30% tongue15% stools0 loose% kg drymouth 30% dryhands 20% zombie10% stings30%
Sum: 7h12+1h15-(41+35+8+6=)90 = 8h27-1h30 = 6h57, up 4x (1h30), most deep. Had forgotten A2+A3-GABA again, put a reminder in my A4-A8-box now.
OK, while I’m at it, I’ll write…
A summary of the last 4 years:
Fibro Dec 2019, a fairly sudden full blown continual flare, but 100s of mostly continual or recurring self-treatments keep most symptoms under control except exhaustibility/Ache, getting “activity energy” of up to 35% - originally… then:
MCAS triggered by CoV-jab #1: Dec 2021, #2, Feb 2022, #3 Nov 2022. Each of these brought my energy down to 5%, slowly up thru time and treatments, but every jab took a further 5% of energy, so down to 35%-5%-5%-5%=20%.
Jan 2023 I tried a TCM naturopath, thru which I lost my appetite, sort of recovered after stopping several attempts.
Feb 2023 a forum friend, supported by my GP thought taking T4 levo-thyroxine might help. Knowing my body I only took 5%, and that sort of gave me some energy, I think a bit more stable at about 20%, but also greatly decreased appetite, plus other side effects, so I stopped after a month.
Mar 2023 my wife got CoV and realized a bit too late, so we didn’t distance right from the start. I never tested positive, but I got fairly severe indirect symptoms for weeks. Then I started getting severe night sweats for the first time in my life, for quite a few weeks.
Apr 2023 My wife was worried about night sweats and appetite/weight, sent me to my GP. I believed these were either T4 (supported by my wife) or “CoV” or both, but my GP believed in neither. He suspected these and the loss of appetite and weight to be B-symptoms of cancer. A swelling in my mamilla and then a slightly higher PSA blood level seemed to confirm that. So he sent me to 3 places to get that sorted. The swelling was deemed harmless and disappeared again, the PSA wasn’t high enough to worry much. I’d been able to get the night sweats under control by changing my bedclothes completely, appetite a bit, weight no gain, but at least no more loss. For the cancer suspicion, I had an appointment with an oncologist, who kept my original reports for ages, altho he’d said 5 days (which had seemed unrealistic to me),
May 2023: After 5 weeks, I asked for my reports back, and was told he’d write his report “soon”, after I’d asked if I had cancer or not.
Jun 2023: 
In another 2 weeks I’ll go for a “2nd” opinion, in case there’s any new ideas - which I doubt. In the meantime I’ve been pulling my circadian rhythm forward drastically and am outdoors nearly all the day. These are from suggestions by people like Jason Prall and Ari Whitten, taking the circadian rhythm recommendations of Huberman and Shelsick further, by getting me to try getting up at 6 (Prall) and pulling eating & blogging etc. earlier (Whitten). However despite this and feeling better for it, my energy has now decreased via 14-16% to 8-12%. I suspect getting up earlier in the long run will not work if I don’t succeed in getting close to 8h of sleep. Various factors had brought sleep down to 5-7h. So that’s the reason for my changing these blog entries, so I can get to bed before 22:00. Also I’m trialling intermittently micro-dosing (1-3%) my antihistamine “as needed”. And trying to find if my nauseous sinus headaches have to do with histamine or something else. I get them from the last hour of sleep on, but not lying down, only AFTER getting up… The associated symptoms (like nostril involvement) don’t fit to usual descriptions of sinus headaches, altho the pain is the same.
Some background regarding my fibro and my MCAS.
I manage to get and keep many of my fibro symptoms that I’ve had during this my continual fibro full flare Dec 2019 down to zero. Just my exhaustibility and the associated severe muscular Ache have always been hard to find something for. For these, things that helped a bit, sometimes, short to mid-term, were getting my sleep pretty well restorative, all the sleep hygiene, measures like Wim Hof cold showers and breathing, cryotherapy, acupressure and Chinese acupuncture. A fibro clinic hardly helped, because I was already doing these kinds of things, but harmed cos of bad sleep and difficult different food. That’s when I realized I need connections on the web, last I knew (90s) mailing lists would have been the way. So then it became a combination of the general web & several forums (which I’m still all on), that helped me find lots of little things, see connections, and also cope. Before fibro from 2010-2019, I’d been fitter than ever before in my life, 1-2h of sports per day. At the same time I seemed to be weakened by swine flu 2011, cos every cold or flu I had then brought me down more than earlier, plus I’d started getting waves of unexplained Ache. This will have been fibro precursors.
I also have my additional conditions pretty well under control that were found in the meantime, my spinal tumour, my Schatzi ring, my high lipids & blood pressure, my jaw inflammation. The latter mainly using a lot of supps.
So up to Nov 2021 I’d been able to go to work a bit, and if it had continued that way and I’d got further treatments working, I think I would have stabilized and even been able to increase that.
CoV occurring parallel to fibro in 2020 was a blessing for quite a time, cos everything was out of sync, my “abnormality” wasn’t conspicuous. Returning to work after 10 months of trying to get things under control, very pro-actively, I started work hours low and went slow. Being able to work online seemed good, but I was too ambitious, perfectionist, and foggy, and crashed with that early 2021, so had to reduce the increase in work. A few hours 4 days a week was the maximum. In hindsight my need of oxygen was probably counter-acted by the high amount of mask wearing. (Due to my fragile state, I do still wear a mask whenever people get too close longer than a minute, but can’t socialize long anyway, with or without. And I normally meet with people outside. Wearing a mask does cause quite a few problems for quite a few hours, something I didn’t realize back then, but couldn’t do anything about anyway.) I delayed the CoV-jabs as long as I could, but finally felt it necessary as one of the last here, in Dec 2021. Now knowing my way around the web, info (polls) on healthrising had supported my hunch that a person with my amount of intolerances would have difficulty with CoV as well as with the jabs - so it the choice between a rock and a hard place, finding the least bad variety. And that’s where I ended up, with sort of “post-vac”. The first jab was much worse than even healthrising’s polls had suggested, which was a 2 week flare. My reaction started an hour after the jab and the 25 symptoms in the first week gradually dwindled to only about 10. Of these I hadn’t recovered after day 72, but jab #2 was getting pressing, so I got that then. That took many months and I’ve never recovered from jab #1, nor from jab #2. Each took me around 5%+ energy, as I try to put it into numbers. Starting from 35% from fibro, so down to 25%. Shortly before jab #2 I re-read the healthrising experts and saw that they were referring to a condition called MCAS. Reading that, I felt that fitted pretty well to my life-long intolerances of GI and skin. So I thought I’d try to go to my allergist, who luckily also had the same feeling, gave me a questionnaire, which unofficially supported / confirmed my self-diagnosis. She also supported me saying that I wouldn’t tolerate all the meds that are typically recommended for MCAS.
However the antihistamine she recommended to try sort of took the brunt off of the 2nd jab, changed things, but not my further decline. I did manage again to cope with some of the slightly different symptoms, cos I’d now realized what is important, and had started with a lot of Hoffman’s MCAS supps.
The 3 CoV-jabs triggered 3 long-term flares of the MCAS I’ve always had, which has added to the exhaustibility that fibro started off in 2019/20.