My triggers, my symptoms, my treatments, my docs (JayCS):
A. My "causes"/triggers
A. Theories: :
x: CSS, genetic predisposition, neuroendocrine,
chronic pain,
() Autoimmune/cytokines, ATP/mitochondria. Sleep problems/disorder. Muscle tone.
B. Biomarkers: Praps cytokines as cold showering & cryotherapy help. Muscle pressure as muscle tone is improved by GABA? Gut (IBSD)?? (But can’t feel a connection.)
C. Starting points: Possibly swine flu 2011.
D. Long-term flares: I am in one long-term flare since about Nov 2019. What might have caused it is … stress/anxiety, pain (back, gut, nerves, skin), overexertion a lot of my life, actually until about the start of the FMS, where I’d got all these down pretty perfectly.
E. Short-term flares: Bad sleep, overdoing it/overexertion, willingly or unknowingly.
B. My symptoms (stub, rest coming up)
Lungs: Air hungriness -> acupressure
I felt air hungry for months, as if I cd never breathe in enough. Also When doing something with a lot of energy I have to pant much more suddenly harder than I used to. When cycling that may be normal, but not when using my arms for 1-2 minutes or after climbing 20 steps in normal or slow speed when in a flare… My ‘felt theories’ are that it is fibro-related due to lack of oxygen in the cells or sudden overexertion due to muscle etc. & pain problems.
My acupressurist got the air hunger down with one certain treatment. She pinpoints the overexertion-panting regularly, using lung acupressure points on ear and body as well as working on my chest.
IBS
rectum burning irritation: Tomatoes.
C. My treatments 1. Helps, 2. Harmed, 3. Neither, to be updated
C.1 Helps me, in order of importance:
Acupressure 2x2h/wk
GABA very helpful since 2021-04, used together with passionflower, Magnesium malate, Magnesium bis)glycinate, glutamine.
Whole Body Cryotherapy: Cold Chamber/Barrel (-120°C, now -150°C (-240°F) for 3 mins before acupressure
Cold showers (inspired by Wim Hof) - helps sleep, reduces pains and Ache
Osteopathy
Back exercises (“yoga“)
Breathing/breath-holding exercise (Wim Hof)
Wim Hof Method, WHM
Connective tissue massage
Autogenous training
Hand exercises
Aqua jogging perhaps a bit.
C.2 Harmed me:
Almost all pain meds I tried:
Cox-2-inhibitors: Celecoxib, Etoricoxib: Severe skin rashes
Opioids: Tilidine: zombified and severe focal seizures
Metamizole (‘Novalgin’): skin rashes
Acupuncture: hurt severely when the needles were in and afterwards
Neural therapy
Hyaluronic acid injections in the lumbar spine - ‘sunburn’ in face, excrutiaing pain in spine
Nose strips - allergy if left on nose on too many hours
Stretching - pain, nausea and cramps if longer than 30’’
Cupping: hurt skin
Electrotherapy - focal seizures
Yin yoga: hurt severely after a short time of stretching
Physical therapy exercises: hurt after short time
Manual therapy: hurt
Manipulation: hurt
Traction devices: hurt, uncomfortable
Hand heat & cold baths in canola seed over 5’: severe circulation problems
Qi Gong: pain, esp. in arms.
Melatonin 2mg extended release and 1mg (halved): zombified
CBD oil 10% 1 drop: zombified
ashwagandha: stomach & gut
C.3 Didn't help me:
Diclofenac
Willow bark
Glutamic acid
Arnica
Rhus toxicodendron
golden root
Magnesium
Calcium
Valeriana
Passiflora
(L-)tryptophan: gut if pills
5 HTP
progesterone
lavender (nice for sleep tho)
Swiss pine (nice for sleep tho)
bioresonance therapy,
gluten free diet
low carb diet
psychotherapy (nice tho, when I’d gone back to a suitable one)
Vitamins & minerals: vitamin b12 injections, potassium, zinc, selene, vitamins B1 + B2, C, E, flaxseed oil, Q10)
amitriptyline: Helped getting back to sleep for a few months, but too harmful (8 side effects).
ozone-autohemotherapy (ozone-injections)
oxygen-autohemotherapy (oxygen-injections)
Heavier blanket (haven’t tried a real weighted one yet, but seems to irritate)
Insoles, special…(?)
D. My docs, 46+..., to be completed
GP 1
GP 2
Rheum 1
Radiologist 1
Gastroenterologist 1
Neurosurgeon
Neurologist 1
Neurologist 2
Endocrinologist
Rehabilitation doc/orthopedist 1
Psychiatrist 1
Psychiatrist & neurologist Sleep lab 2
Psychiatrist, sleep lab 3
Rheumatologist 2 (Fibromyalgia diagnosis)
ENT 1
Alternative practitioner
Clinic examination, 1 doc: Neurologist/Psychiatrist/Pain doc 1 (Orthopedist/Manual therapy)
Orthopedist 2
Clinic examinations, 3 docs: Pain doc 2, orthopedist 3, psychologist 1.
Pain doc 3, 4, 5, 6
Cardiologist 1
Angiologist
Lipidologist
Allergologist
Centre for rare diseases - group of docs, neurologist 3
ENT 2 & 3
Dermatologist 1
Urologist
Cardiologist 2
Psychologist 1 (when?)
Psychologist 2 (when?)
Rheumatologists 3-6, Psychologist 3
Dermatologist 2
Endocrinologist 2
Nephrologist
Public health officer
Psychologist 4
E. My diagnoses (to be translated & re-arranged), 27+...
Primary combined hyperlipidemia
Arterial Hypertonia
Carotisatheromatosis
Primary Raynaud-Syndrome
Varicose veins,
Chronic Venous Insufficiency
WS-Syndrom (b.w.), 1981
Focal Seizures
Renal cycst (harmless)
Tumor L1
Spinal syndrome
- Beckenschiefstand
- LWS-Syndrom
- LWS-Osteochondrose
- deg. LWS mit Segmentlockerung
- Hyperlordose
- deg. obere HWS
- Hyperkyphose
- Facettensyndrom
Gelenke: Polyarthralgie, „2020“ (2010)
Allergien (nochmal allergologische Abklärung 6.7.2020ff), 1982 Nahrungsmittelunverträglichkeiten
Hausstauballergie
Vorform von Neurodermitis-Vorform Raumforderung L1: Vermutlich Neurinom, ohne Wachstum Apr20, Zufallsbefund Okt19. HNO: Septumdeviation, Nasenmuschelhyperplasie, 2020 (2010)
Psychisch: V.a. Erschöpfungsdepression, 2020
Angiologisch
Dermatologisch
Zentrum für selten Erkrankungen am MHH 13.7.ff.,
- Orangene Flecken an Unterschenkeln & Füßen mit Hautunebenheiten, 1990
- Kalte Füße (und Hände), blau nach Hochdrücken, 2016
- Lipom (?) linke Flanke Überschneidungen mit Fibromyalgie? Feb16, bes. Aug19
Urologisch, 20.7.: (Muskuläre) Schmerzen vorm Wasserlassen,
Neurologisch, 3.8.: Schmerzen im Gesicht (Trigeminusneuralgie wohl)
F. Physiotherapists 15 for fibro (about 10 before that for back)
Gym 1-3
Osteopath
Cryotherapist → acupressurist
Clinic: about 10 incl. aquajogging/exercising (cryotherapists), connective tissue massage, electrotherapist, 2(-4) hand exercising & hand baths, osteopath, traction, substitute: leg work, tai chi therapist/progressive muscle relaxation.
Version 2021-08-11 = August 11th