Fibro Controversies Day 2 summary - following from post earlier in week here is a video that brings together some of the research that featured at #Fibro2021
first appeared on our FB group at facebook.com/groups/fibroac...
View here: youtube.com/watch?v=kcM7b2p...
Thank you for posting this its very interesting. If the brain is in an overactive state, a bit like with the amygdala function and anxiety - should we be looking more at maybe meditations, calming so the brain stops being in a constant state of over reaction and then maybe things would return to normal,? also if the pain does not exist why do we sieze up? I have ice cold legs/thighs all year round, so is that not real either - just the doing of our brain?
I certainly took from it that your baseline could be made worse from stress or other external effects and this has been proven. However, the limiting or eliminating of these aspects would perhaps get you baseline or optimal fibro level.
As to regressing this further I am not sure but logic suggests that it could be possible.
"Pain not existing" is complicated whether it is the type of pain or even thinking back to Descartes and the application of X pressure on the hand would then cause Y pain in the brain. X+1 would cause Y+1 in my clumsy mind.
But we have moved on and the stimulus we feel applied and the chemicals that carry the message to the brain (nociceptive) are not linked / the same. The screaming construction worker that goes to A&E with the nail through his construction boot and foot and in massive amounts of pain to then find out when the boot is removed and the nail is sitting between his toes and no damage caused is a good explainer for this separation. Nociplastic pain is the new kid on the block and is our companion in our journey with fibro.
Thats all very fasinating and does make sense. The brain has been over stimulated by external factors like stress etc and is now causing problems and not able to switch off. I thought one of the bigger issues was that us sufferers were unable to to get into the Delta stages of sleep, which means the body does not "self repair"
I have always been a believer that we could improve our situation and Dr Leon Chaitow's research showed that people did recover fully, I know that I am so much better than what I was say ten years ago, I would just like to keep improving.
One thing that I think would be helpful is if the doctors could prescibe supplements, if someone is so poorly and unable to work, they would not necessarily be able to afford supplements or even to make healthier eating choices. My surgery seems to operate more like a business these days and I know from speaking to GP's they don't aprrove of supplements - which is a great shame, they have helped me on my road to recovery.
Or: Click on the links in the youtube description.
0:00 Introduction
0:49 Overlap with Sjögren’s / Sjoegren’s (Claudio Vitali)
1:32 Salivary Biomarkers (Laura Bazzichi): would very much help.
3:18 Neuroimaging of fibromyalgia (Diana Torta): exciting for all pain conditions; working of drugs; measuring reversal of changes.
7:32 Why opioids should not be used to treat Fibromyalgia (Mary-Ann Fitzcharles {not -gerald}): 50% still on opioids, but many long-term side effects, incl. increase of pain; Tramadol seems a bit of an exception.
10:05 Why and to what extent do Cannabinoids work in Fibromyalgia Patients? (Silviu Brill): CBD etc.; not simple: doesn’t work for everyone (by far), not for all symptoms, takes its time to find the type and dose; street corner types as well as CBD oil types vary a lot, THC and CBD contents have risen; expensive.
13:17 Effect of Different Drugs: Does it make sense in Fibromyalgia? (Winfried Häuser): pro CBT, mindfulness, but also the problems to find which drugs work for you.
14:39 Multicomponent Treatment Strategies in Fibromyalgia (Jacob Ablin): Not easy. More than one treatment. Not just drugs. Exercising, mindfulness. and their combination, e.g. Tai Chi. Health System problems for this (NHS).
Skipped: Therapeutic validity of exercise interventions in the management of Fibromyalgia (Roberto Casale & Giorgio Ferriero)
Skipped: Neurofeedback (Haggai Sharon)
17:08 Mind and Body Therapies (Piercarlo Sarzi-Puttini) Drugs incl. Cannabis, also Exercise & Mindfulness (Work a little bit thru the pain, as it’s the brain misbehaving... {depending on pain types})
19:34 TENS-study (Jamison et al.): Positive results in some. (Gate theory?)
21:07 Anti-inflammatory nutritional intervention (FODMAP?) (Ana Silva) Diets are usually generally healthier anyway - but does it have to be a certain one? Triggers; good for self-efficacy.
23:35 Working related problems of women (but not just): e.g. too disabled to work, but not disabled enough to get disability pay... (Erica Briones-Vozmedian)
Live panel:
24:58 e.g. (German) insurances as opposed to NHS often don’t pay for outlier/off-label drugs like LDN (& pramipexole),
26:22 use of cannabis to come off of opioids; Tramadol is in a different category to other opioids, so more easily prescribed; discussion about (not) using opioids, however still even methadone for some; shouldn’t be first course of action; but some may need pain killers before being able to exercise.
28:12 patient organisations. Sweden, Italy, Israel: Still difficult with doctors and insurances not acknowledging the existence of FMS. Researchers should join the political conversation.
30:10 Role of registries: bank of health information about people, with their scans etc., progression over time, co-morbidities. There are rheumatology registries already, that may help.
31:30 What is relevant to assess clinical improvement?: (Jose A. Pereira Da Silva): Outcome measurement. Criteria. Objectively, plus subjective difficulty for a clinician to decide what "better" is in a certain patient.
33:20 Can patients achieve a persistent remission? (Eduardo S. Paiva) How measurable? People not going to a doctor any more would be a bad way of measuring...
34:33 Live panel: Potential use of registries; of brain imaging; experiences of the patient representatives with clinicians; measuring the economic impact of FMS, e.g. on employment, physician’s time, etc.
Link to the contents of the 1st video, day 1: healthunlocked.com/fibromya...
Fibro Awareness
Fibro
Meniere's Disease or Fibro?
I had my blood drawn for the FM/a fibro test.
