Brain empty / full :( fibro controversies 2021

[desquinn]

Just finished two days at fibromyalgia2021.com and listening to fibro experts for two days has made my head hurt. Excellent info, with some I agree with, some I know till has a journey to travel and some I think are going to find a dead end.

But overall it was excellent to hear the participants and discover new information and perspective. Image below is of some of the experts taking part including our very own Prof. Ernest Choy.

I was live tweeting during the conference so there are thoughts and some slides at twitter.com/fmauk and most are tagged with #Fibro2021

[Just-keep-swimming]

Hi desquinn. Was it a recorded conference or is there anything I can read? I would be really interested in finding out what the latest research has uncovered about Fibro.

[desquinn Partner Volunteer FMAUK Trustee in reply to Just-keep-swimming]

It was recorded but they are only for attendees. I may be able to summarise some of it later but suspect that I will not have time despite good intentions. The link above has the programme and some preview info and from some you can infer the relevant papers.

[Just-keep-swimming in reply to desquinn]

Thank you. I saw some topics about why opiods and cannabinoids don't work and to be honest, just the heading scared me. Opiods definitely do. I am proof of that. They take the edge off and make me able to get out of bed. It scares me to death to think they may stop allowing us to have them. I can't go back to being in bed in agony everyday again. I have already had to give up a job i loved and I think I would give up entirely if that were to happen. Yes, I may become reliant upon them but but to way that up against having no quality of life .... Well you can't. It's everything.

[Makie-Uppie in reply to Just-keep-swimming]

I am in the same boat, I just about function. I have under a pain consultants instruction dumped the pills and just died, lay there like a pain filled beef sausage. There was no end, no relief and no change, not even the supposed withdrawal symptoms reared their ugly head.I lay for a month like that before they decided to reinstate the pain control and then I rose from the dead, not better, but functional.

My family were horrified by what happened and a few other things that I have mentioned previously and wanted me to take one of those medical error cases. I refused to because it was not an error and the people involved were genuinely trying to help me but sometimes the theory does not pan out in practice. (if they are watching I still won't )

[Farmerboy]

Hello you where a Brave man listening to that over two days. To much information can be a bad thing and knowing what’s lies a head can cause a negative out look on one’s self, I have MS,RM stage but I know in years hopefully it will get worst. I have plenty of information on my iPad as pdf files but only read when and if I need to.

[desquinn Partner Volunteer FMAUK Trustee]

I enjoy new information and love learning. Can relate it to a primary school teacher exposing me to reading more and not knowing this word or that one and getting me to look it up in a dictionary and then google came along....or to be more accurate altavista

And even the day after I am a bit drained but looking forward to revisiting some of the videos.

[JayCeon in reply to desquinn]

Know that feeling when you're reading a post and aren't sure if you wrote it yourself or someone else? 😜 Alltheweb, MetaCrawler, dogpile, searchenginenews... My childhood dreams come true, despite fingers in the library Britannica and others. And now my data/google-phobia makes me put up with second best: metager, startpage, duckduckgo... 🙄, but schizophrenically writing all I want except my name and exact place on forums, cos it's vital for my mental hygiene... 🤣 People are people...

Looking forward to all your news. 👐👏🤝

[redmaple-5]

Were any new treatments discussed? Did the similarities between Fibromyalgia and Long COVID get a mention? Would love to read a summary once you have had a well earned rest. 😀

[desquinn Partner Volunteer FMAUK Trustee in reply to redmaple-5]

some conversation about long covid and other conditions but not that much to be honest. Nothing ground-breaking treatment wise but refinement of existing info and looking more at the Biopsychosocial aspects as a whole. Some conversations on cannabis and again the negatives of opioids.

However, the world of chronic pain is getting some progress but the move from research to clinical is always longer than we want. As always when I have this sort of opportunity I am filled with optimism but tempered by realism. Even with treatments then regulation and health services are "obstacles" sometime i.e. the politics of things.

But I am also always left with sympathy for research clinicians and the doctors that are having to deal with our frustrations but also experiencing their own at not being able to help more.