∑ JayCS's Fibro Blog - summary

JayCS · May 15, 2021, 8:46am

To bundle JayCS’s Fibro Blog (see summary-thread ∑) more I’ll sum it up here, linking to important posts.

Timeline

Pre-fibro, 1977-2018

1977-1985 stomach, gut, back, skin (acidic, IBSD, scoliosis etc., dryness), depressiveness, social phobia.
1985-2000 Reduced these by elimination diet, exercises/hard mattress/flat shoes, little water contact, CBT.
2011 swine flu, followed by flu and colds being tougher, with Ache, higher sleep need.
2016 Ache-flare. 2017 better. 2018 increasing.

2020: 45ff docs, 30ff diagnoses, of 65ff treatments most harmed, osteopathy & cryopressure help

2019-10 to 11 1st rheum → harmless spinal tumour found, no diagnosis.
2019-12 to 02 neurologist, endocrinologist all OK. orthopedist with meds & treatments that all made it worse. Sick leave. Tried ‘all’ herbs and supps for sleep and pain.
2020-02 2nd rheum: Fibro-diagnosis, Metamizole harmed. Sleep lab: OK → Spinal tap: OK.
2020-03 to 06 Pain docs: cupping, tilidine, 4m. amitriptyline harmed. ATP-supp-regime didn’t help.
2020-04? to 08 Osteopathy and sometimes neck exercise group help get pains down bit by bit.
2020-06 Cardiovascular problems: 5 meds and Mediterranean diet. 2nd orthopedist → appts. at 3 clinics.
2020-07 Checked side-problems to be safe: uro & allergies - nothing new.
2020-03-07 to 09 Centre for rare diseases: Sjögren’s? No. Hashimoto? Not really. Kidneys: OK.
2020-06 Whole Body Cryotherapy: helping really well off and on for everything, energy, exhaustibility, pains, Ache, stiffness.
2020-09 Rheum./fibro-clinic: Interesting to try more, but harmed mainly, as expected.

2020-09ff Acupressure as main therapy!!! for pains, cold tolerance, breath, legs

improves on the osteopathy by getting pains down by end of the year, plus a few quick ‘miracles’ like temperature control!, better getting enough breath!, leg strength!; work still in progress as of 2021-04

2020-11+12: Struggling with Work rehab 10h/wk, 20h/wk, time off Dec/Jan: brilliant.

2020-11 Started work-rehab 4 weeks at 10h/wk. Many moderate days, feeling probably 50% most of the time, few good days, few really bad days.
2020-12 Work-rehab 4 weeks at 20h/wk very difficult, esp. due to talking thru the mask, but a challenge to use exercising, cold-showering & breath-holding to get a grip. More 40-60% days, even less good or bad days.
2020-12 to 2021-01 Great winter break as soon as working stopped for 15 days, the first 7 days with 5-HTP, crumbling on the 17-19th day, good again on the 20th and 21st. Sleep-/Self-discipline a problem.
2021-01 Ozone-autohemotherapy didn’t help and in March a 2nd try of acupuncture harmed.
2021-01-23 Levodopa for RLS: No. JayCS’s Fibro Blog (see summary-thread ∑) - #208 by JayCS

2021-02 work: 41h, 37h, then 28h/wk, ending in disability pay decision. Twist-stretching helping

2021-02-05 Twist-stretching like a cat. Diet. Ashwagandha? TPO/TSO/Thyroid: selene? CK-MB/CK-Ratio, Sjögren’s No, check PsA (Psoriatic Arthritis). JayCS’s Fibro Blog (see summary-thread ∑) - #225 by JayCS
2021-02-12 Sleep askew, snow in the loft, waiting for flare. Had been trying 10h/n → back to 9h/n.
2021-02-17 Flares from short sleep, snow in loft (and/or standing working? and snow cycling), incl. pains again sometimes. Jaw pain starting up again, down by beginning of April, probably taut from stress.
2021-02-25 Time pressure JayCS’s Fibro Blog (see summary-thread ∑) - #243 by JayCS, JayCS’s Fibro Blog (see summary-thread ∑) - #249 by JayCS
2021-02-26 Nails JayCS’s Fibro Blog (see summary-thread ∑) - #251 by JayCS
2021-03-03 Disability pay decision JayCS’s Fibro Blog (see summary-thread ∑) - #257 by JayCS

2021-03 Pressure: Jaw taut/ache, sleep 10-13!!h: worse from melatonin & CBD: 4 weeks sick leave

2021-03-04 6h50 sleep JayCS’s Fibro Blog (see summary-thread ∑) - #258 by JayCS
2021-03-05 Week: Disability, got work down, strange sleep “pattern”, mouth guard, melatonin…
2021-03-05 Melatonin 2 days heaviness JayCS’s Fibro Blog (see summary-thread ∑) - #260 by JayCS
2021-03-09 Introducing “% feeling well” JayCS’s Fibro Blog (see summary-thread ∑) - #263 by JayCS
2021-03-11 Tired, narked from work JayCS’s Fibro Blog (see summary-thread ∑) - #265 by JayCS
2021-03-12 work stopped sleep → 1mg melatonin JayCS’s Fibro Blog (see summary-thread ∑) - #266 by JayCS
2021-03-14 2 nights 1 drop of CBD oil → heavy, Ache & fatigue, stiffness & drowsiness.
2021-03-17 High sleep need & drowsiness, even worse from CBD oil & melatonin. (Last ozone.)
2021-03-18 sick leave for 4 weeks, till 18th Apr.
2021-03-20 Melatonin 1mg, JayCS’s Fibro Blog (see summary-thread ∑) - #274 by JayCS, JayCS’s Fibro Blog (see summary-thread ∑) - #278 by JayCS
21st-24th: melatonin 2mg, dead tired. 26th-Apr5th 1 drop of CBD oil dead tired.
2021-03-26 Deliberately overdoing it sometimes JayCS’s Fibro Blog (see summary-thread ∑) - #280 by JayCS
2021-03-27 Thoughts: my life; images of what fibro is doing to us JayCS’s Fibro Blog (see summary-thread ∑) - #281 by JayCS
2021-03-29 Mouth guard caused more tooth ache, better when out. Tooth/jaw ache better then.
2021-03-31 Depressiveness etc. → Psychologist
2021-04-02 Usually 10-12h of sleep the last weeks, maximum today: 13h05 until GABA Apr 14th
2021-04-05 Stopped CBD, 6th: Melatonin 1mg.
2021-04-07 Drowsiness: Meds? No more melatonin or CBD oil! No more selene & lercanidipin.
2021-04-10 Feeling rotten these days, autogenic training at night helps a bit.

2021-04: GABA helps get to 90%: Better stiffness, bladder, sleep, energy, exhaustibility & Ache!!!

2021-04-03 Palpating helps bladder (& gut) a lot JayCS’s Fibro Blog (see summary-thread ∑) - #288 by JayCS
2021-04-14ff GABA with glutamic acid, passioflora & Mg brilliant for sleep, stiffness, bladder & more: 90% JayCS’s Fibro Blog (see summary-thread ∑) - #306 by JayCS
2021-04-24 Still great, side effects there, but decreasing, and tolerable up to now. Next step after 2 weeks’d be to add 2 meds I’d left off (selene, lercanidipine), then try what the GABA is like without the glutamic acid and/or the passioflora.
2021-05-06 No negative effects any more, 10 good effects:
JayCS’s Fibro Blog (see summary-thread ∑) - #338 by JayCS
2021-05-07 Focusing on underdeveloped muscles (hardly possible, needs training!) helps exertion from becoming over-exertion, saving energy, making activities more effective.
JayCS’s Fibro Blog (see summary-thread ∑) - #339 by JayCS
After the suggested hack-order hack #1 autogenic training, #2 GABA, #3 twist-stretching JayCS’s Fibro Blog (see summary-thread ∑) - #308 by JayCS
I’d now say #1 GABA, #2 selective straining, #3 autogenic training/relaxation, whilst twist-stretching is hardly necessary any more, cos of the GABA.

2021-05 Further supps: Harmed (glutamic acid, ashwagandha, 5-HTP, tryptophan); readjusted GABA; L-dopa helps!

20221-05-17: Sleep lab psychiatrist talk very helpful JayCS’s Fibro Blog (see summary-thread ∑) - #349 by JayCS?
20221-05-19: ***Glutamic acid had caused a bit more frequent seizures. :
So I’d tried to replace it, first with ashwagandha ( terrible GI ),
then 5-HTP ( too awake ),
now tryptophan ( GI and dead tired; serotonin-overload ):
JayCS’s Fibro Blog (see summary-thread ∑) - #350 by JayCS
Bottom line: leaving them all first (only revisit more carefully), readjusting GABA in smaller doses of powder first.
2021-05-20: Tried levodopa after all, didn’t seem to work at night at first, but partly better and more relaxed all day JayCS’s Fibro Blog (see summary-thread ∑) - #353 by JayCS

2021-05 Esophagus block hack, !gum!, not tooth ache

Esophagus block hack: palpating the “1st quadrant” to the above (right) of my belly button JayCS’s Fibro Blog (see summary-thread ∑) - #351 by JayCS
Gum!, not tooth, ache, needs carefully cleaning with the thickest small brush to get between the 2 last back teeth JayCS’s Fibro Blog (see summary-thread ∑) - #355 by JayCS

Forum 'work' since 2020-09 Blog, References, Contributions

2020-09 Started forum-‘work’.
2020-10 Started Fibro-blog
2021-01-18 Structuring blog entries more JayCS’s Fibro Blog (see summary-thread ∑) - #203 by JayCS
2021-02 Dates on blog entries.
2021-04-12 Restructuring blog entries. summing up sleep/activities/treatments, hiding details, and using the development bit to introduce & nurture habits using “” as token, then the minutes I do them from 2021-05-13 onwards.
2021-04-16 Starting to build Fibromyalgia References: Symptoms, triggers, treatments etc. intertwined, and
2021-05-25 Improved the systematic symptom list, and the rearranged the cause/trigger list a few days ago, so I might soon be intertwining them and

linking to treatments like GABA & Co. and other topics

GABA & derivatives, gabapentin (Neurontin), pregabalin (Lyrica), phenibut, baclofen, picamilon - #6 by JayCS

Thread-starts before that

Studies/Talks, IBS, Memes, Ozone, Fatigue, Relaxation, Sicca, Males, Wakers, Cryotherapy, Symptom lists, FM-Lessons, Anxiety, Acidity, Hand ex., Breathing Exercises,

Thread-contributions

Kinesiology, ‘flu’, FM/a, Melatonin, Duloxetine, diet, Spoon theory, Laughing, Hacks,

Further topics on my blog

Topic		Replies	Views
JayCS’s Fibro Blog Symptoms & Treatments	1709	43111	September 20, 2024
Reiki, Energy Therapy, Craniosacral, etc Complementary Therapies	4	2085	March 30, 2015
General Fibro Symtoms (yeah, we've proably heard them all by now) Symptoms & Treatments	14	739	May 19, 2014
Was not fibro but spondylitis General	11	124	May 31, 2013
Rheumatologist Visit What's New With You?	3	1776	December 24, 2014

∑ JayCS's Fibro Blog - summary

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