JayCS’s Fibro Blog

2021-06-08, Tuesday

FEELING Well % / Pain 0-7 :left_right_arrow: DOING
Sleep: 70%/1 :left_right_arrow: 8h25, up 5x (3h55) :x:
Activities: 90/85%/1 :left_right_arrow: 2h05 (work 10’, sports 1h45, shop 10’) :white_check_mark:
Treatment: 90%/1 :left_right_arrow: 2h55 (self 56’, acupressure 2h) :white_check_mark: (fw: 1h)
Effects of 400mg+350 GABA, 100mg levodopa+25%benserazide, 2x290mg passiflora:
Bad! Lower back unrest ‘LBU’ again. Twice in a row is worse than ever, it went into my feet too. That’s it. Levodopa is out. I can try again when I don’t have to work, but not now.

Checked in on Trudy Scott's GABA/anxiety-blog, very helpful...

https://www.everywomanover29.com/blog/gaba-physical-tension-stiff-tense-muscles-type-anxiety/#comment-32926
Hi Trudy, thank you! Sorry for not coming back sooner!
Yes, irritatingly I did purchase Verla Glutamin thinking it was l-glutamine… O.o - OTOH I didn’t yet know there is a difference. But I’d read somewhere about adding glutamine, and wanted glutamine.
Thanks for pointing to your book, didn’t realize you had a German version. Looking for it I also see a book with a VERY similar title and VERY similar look to the front cover despite a different publisher (EFKO, not unimedica) by “Adriana Lopez”… (Other books using that author-name from that publisher are about keto, sugar-free, low carb, smoothies…) I assume different marketing at first?
“Ängste Überwinden durch die richtige Ernährung: Wie Sie durch Anti-Stress-Nahrung Ihre Stimmung aufhellen um Gesund und ausgeglichen zu leben”. EAN 9781723897764.
So trying glutamine might work differently to glutamic acid, hmm…
I was certain the 8 first side effects came from the 750mg GABA. But you asking so specifically makes me think whether all or some of it was the glutamic acid too (or the passionflower).
In the meantime (since May 19th) I went down with the dose, inspired by your recommendations and ones from my sleep doc, with 200-300mg sublingually, adding only a bit more in my sleep breaks. He was thinking of me adjusting the dose how I needed it for sleep. Unfortunately the stiffness, pain, lack of energy etc. started returning. I then realized that it is helping more with the days than the nights, so I’ve gone back up to 750mg again, which thankfully immediately got my days back. Suggestion of my acupressurist is now to adjust the dose according to how much strain I’m having…
Unfortunately also, I’ve been getting “stomach burn” at night, increasingly, maybe worse since I’ve been opening the capsules. Any ideas for that? I’m not sure how much protection the capsules offer. I’ve been collecting them, so I’ll now try taking 2-3 smaller doses in those capsules as long as they last and order some if that helps.
Yes, I usually have a string of 1-4 focal seizures about once a month. Meds I was prescribed made that more frequent, first amitriptyline in the long run, and esp. tilidine - once and never again, thankfully. Haven’t had one since April 23rd which is good, so I think not just because of leaving the glutamic acid, but also the GABA.
At the moment I can’t manage to find how to fairly consistently repeat the good nights I had. My sleep doc asked me to try levodopa (suspicion of slight RLS), but that seems to be making my unrest worse. The stomach burning isn’t helping either. Hoping it’s better again once I’ve got those 2 sorted out. And I’ve run out of magnesium (malate!), maybe that was helping too. More passiflora didn’t help.
I’ll be back quicker this time… :slight_smile:

Effects of acupressure: Wow, today was really intense :bangbang: Loins… Very painful, but directly afterwards totally relaxing, much easier to put on shoes, get on my bike, walk up stairs, cycle, etc. Reasoning: My LBU seems according to the ear acupressure to be coming from the pelvic floor and similar muscles (& ligaments), maybe caused by the scar tissue.

Feeling/Action-details

(Well in % / Pain incl. Gut 0-10) :left_right_arrow: (Sleep, Fibro-‘Work’, Work Digi & Live, Activity, Treatment)
Sleep levodopa+ 20:45, GABA 21:00
21:45-
22:15: 30’ neighbour’s telly, LBU (despite levodopa), slight pain starting up in left foot… → CFS :shower: & 5xRR, shot up for a few minutes, but quickly down to 126/80, pulse 60 as usual.
1:45: 15’ - wow, waiting really paid off, I was wide awake first, but didn’t give in, just thought I’d make myself a nice time wih AuTr and didn’t even manage. That’s the CFS for ya. Well, for me! (pee, drink, GABA capsule with 350mg rest). Right arm and right calf playing antics a bit, summink for my acupressurist praps. RR 3x 10’ 128/77 56: Pressure too high for night time, pulse low.
3:20p limbs OK, stomach burn starting up → soy drink & Gastricumeel.
3:50 1h10 LBU → curling up backwards, phoenix position; stomach burn → soy drink & now Gastritol. Shaking dance: left leg then hurts from hip downwards. 6. ate.
5:20: 1h55 ideas:

For someone who is finding it hard to make a big decision

Your strong feelings that keep you there are probably more important to have clear than factual arguments & comparisons for changing. Only this allows you to jump up from the 3-metre board & dive smoothly into the cool water. Otherwise you might hurt yourself unnecessarily by jumping prematurely. This would act as confirmation and prevent you from jumping again. Fear seemed to be the strongest feeling right now. E.g. to look like a failure. Or letting others down. It was difficult to objectify letting others down - maybe it is something else after all? Being a failure or proving oneself depends on the challenge: What is the challenge really and who is setting it? And you are, so to speak, between two challenges: how much of it will remain when you have made your decision? How can you minimise this rest? Are there also other feelings?

2h15+10h-30-15-5-1h10-1h55=12h15-3h55=8h25, up 5x (3h55)
TT 3:5, but easy, extremely relaxed. Probably only due to the acupressure directly before ‘liquefacting’ my legs, but not my trunk or arms.

BTW does watching geological liquefaction make your mind explode like it does mine? O.o!

Crazy enough when water just rises out of the ground due to earth movements, but when soil liquefaction makes whole areas swim away it’s mind blowing (and watch out: these vids makes me nauseous and my head swirl and can even set off a focal seizure)
https://youtu.be/J_egBKj1W08 3’ with explanations from National Geographic
https://youtu.be/3NSXmTfASM0 1’ from sattelite

Cycling 12’+12’+6’+3’+3’=36’
Starting to get tired (eyes, slightly feverish) from 18:00 on.

Self-treatments: (BTW: These are only things that I’m spotlighting & “rewarding” myself for at the mo by counting them; much of what I do at night is self-treatment to get back to sleep or alleviate (1-2h/d), certain regular movements at daytime, like twist-stretching (30’), writing this blog is self-treatment (30’-60’/d), and the further fibro-work indirectly)
:white_check_mark: Timing, hunchback-hard-cushion 5’, AuTr 5’, cold shower (10’), RR 13’, shaking dance 2’, palpate 2’, back 5’, neck 1 5’, = 56’
:x: belly ', workout ', neck 2 ', yoga ', loins ', marionette-hang ', breath-hold ',

Fibro-work: 21:35:5’ 22:30:5’ 4:00: 15’ 17:10: 20’ 19:00: 15’ = 1h

Blog summary: ∑ JayCS's Fibro Blog - summary - #2 by JayCS
References: Fibromyalgia References: Symptoms, triggers, treatments (to be intertwined)

Abbreviations & explanations; each entry starts with the night meds & sleep

Each entry starts with the night meds & sleep, which I then save, before going on to activities/treatments. So Fri-day starts with Thursday night, the night before Friday. Because most of the night is after 0:00 and because the night no longer is something to neglect, it’s vital.
’ = mins = minutes, ‘’ = secs = seconds, h is hours as time length, 3h is 3 hours long, 3:00 is 3am, 15:00 is 3pm. 18:10:40’ means 40 minutes, starting at 18:10, = 10 minutes past 6pm up to 10 to 7pm
The self-treatments listed are only things that I’m spotlighting & rewarding at the mo by counting them; much of what I do at night is self-treatment to get back to sleep or alleviate (1-2h/d), certain regular movements at daytime, like twist-stretching (30’), writing this blog is self-treatment (30’-60’/d), and the further fibro-work indirectly.
AuTr = Autogenic Training (usually to actively get - back - to sleep, so counting it as sleep and AuTr…), cold/FCS = Flash Cold Shower (20-60’’) , ex = exercises, HWB = Hot water bottle, breath-hold/WHM-B-H = Wim Hof Method Breath-Holding, slp = sleep.
Reasons for getting up w = (a)wake, lbu/LBU: lower back unrest (‘RLS’?), p: pee, i: ideas. PsA = Psoriatic Arthritis-suspicion
fw = fibro-work
Pain 7 = crying (/out) point
TT = table tennis, 5:1 = score, usually showing how well I’m feeling: energy, relaxedness & alertness if the first number is much higher than the second.
Cold showering itself only takes 20’’+40’’=1’, but I now count it as 10’.
Neck 1 is stretching in the various directions, neck 2 is pressing my head against my hand “without moving”.
loins = loins/groin = stretching the ligaments there.