Informative YouTube Video: Just spent... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Informative YouTube Video


Just spent an hour watching this Youtube video as I like to learn and understand what is happening to me. Sean Mackey from Stanford explains the mechanics of fibromyalgia and discusses research.

I wish we had a place doing research in the UK..maybe there is one?

Hope this link works :)

20 Replies

i found this video very interesting, however most i was already aware of, some info i wasn't eg brain shrinkage this is scary .We do have research going on, St Johns In London are looking into Fibro, I took part in the research program, but yes Britain is way behind in any kind of research , Thanks for posting this video .

Hugs Kira x

Kazzyj in reply to Hidden

The brain shrinkage issue did bother me quite a bit, from having a rather fast mind, I now find mental arithmetic, quite simple stuff, almost impossible to do!

Thanks for the info on St Johns, let's hope they come across some answers soon :)

Hugs x

Hidden in reply to Kazzyj

All we can do is hope eh x

Really Good video, I liked it. Thanks for posting. Gentle Hugs, Ari

Very, there is some prospect of hope with the drug Naltrexone, although it's going to be years of waiting for us here in the UK.

Kazzyj in reply to missymoomoo

I think it shows the complexities going on with Fibro! I am going to mention Milnacipran and Naltroxone to my GP on Friday, it's my way of nudging her to keep informed :)

Will watch later when I have a bit more time. Many thanks for sharing. Hugs Saskia.

I have heard of naltroxone before - think they use it for weaning opiate abuse i.e heroin !

it is used in some UK specialist clinics- MS sufferers trialled it as it has good anti-imflammatory affects, also it was trialled in U.S for Chrons. it is also used in UK for autoimmune diseases. it has lots of gastro side effects thou !!

Thanks for sharing, wish he was my specialist....what a great guy....

Thank you so much for this video. This very interesting and very good if you want to explain about what you are goinh through to your family.

What a great video. Very informative - it should be compulsory for all GP's and specialists to watch and maybe we will be listened to.

Great video, would be great to show those that think fibro is all in our minds. Like Rosaann, would be great if he was a specialist here in the UK that we could all access. Becky. Xx

Kazzyj in reply to Malwimmy27

I have spammed this video in my facebook groups too :) It does help to give people an idea who are clueless about fibro :)

Thanks for this, Kazzyj.


Thank you very intersting

Thank you so much found the video very interesting and encouraging.Have been to my gp yesterday and got two more prescriptions, also was sent for an x ray but have to wait for result.Been for a massage today and was told that my neck pain is due to my spine being out of alignment.This has happened before because we seem to be compensating in Fibromyalgia pain.Dr.also put on x ray form ? O. A.Until I get the answer I have to suffer.So am in awful pain cannot do anything today but am up washed and dressed which is something.Gentle hugs to all out there suffering xx

Kazzyj in reply to Petra

I think most of us know the effort it takes to get up and dressed,Well done on that Petra ..maybe OA means osteo arthritIs? Some times I find the pain all blurs and i don't know which is fibro, or arthritis or rheumatism!I hope your pain eases soon x

A very interesting video..I'm thinking of making a copy and sending one to my doctor and one to my Job Center....perhaps they both could learn something ..I know I found it very helpful..serously been thinking of trying the Cough medicine treatment...(Guaifenesin) accesable...any one else tried it....?

Kazzyj in reply to rosaann52

hi Rossaan, Dr Mackey mentions cough mixture in the Q & A and doesnt recommed it :) Good idea to get more people to watch this video!

I'll watch it again ...I must of mis heard what was said..I thought he found it affective...fybro brain again.....

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