This Is Not A Question But A Statement - I Have Been Invited To Join An Fm Study That Will Begin This Fall For A Duration Of 3 Months. | MyFibroTeam

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This Is Not A Question But A Statement - I Have Been Invited To Join An Fm Study That Will Begin This Fall For A Duration Of 3 Months.
A MyFibroTeam Member asked a question πŸ’­

I have been asked to be in a pilot project for the province of bc and possibly spreading across Canada. It is a joint effort between UBCO and the Similkameen-Okanagan Health authority. Key medical personnel are : a Rhuematologist, a Cardiologist, A Psychiatrist, a nutritionist, a pain specialist, a physiotherapist and others my fibro brain can't remember. I will endeavour to keep you all in the loop as it starts and progresses.......I hope I can find ways to make life more bearable and will let… read more

posted June 5, 2015
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A MyFibroTeam Member

The sessions have just ended.....I am going to collect my thought and write a semi-detailed response to you all within the week!!!

posted December 5, 2015
A MyFibroTeam Member

Okay, I do not wish to be critical of the study, after all the people involved were really trying to help and find answers, coping strategies, etc. The definition used for Fibro was "Chronic pain due to lack of restorative sleep". I don't know if I agree with that. Dr's do not know what causes it, why women are more subject to ending up with fibro which is why Dr's throw anti-depressants at you. Anti-depressants only work in 18% of the patients. anti-depressants are supposed to helpwith sleep. We had a dietician come in a few times. Anyone who knows the canada food guide is already aware of nutrition. People with fibro want answers....I have found that the independant research that I have done over the years was more comprehensive than anything I foud out in the study with one exception. We had use of a gym and were over seen by 3 physiotherapists.....that did help!!!! So, get your mild to moderate excersise a few times a week and you will feel better.....We did have a couple of pain managenment sessions with a fellow by the name Neil (or Neal) Pearson, here in Penticton...he has a website with a couple of you tube video's....I cannot think of the name of his website but google his name and you should come up with it.......wish I had more good news to tell you all......

posted December 27, 2015
A MyFibroTeam Member

Oh how true. people think I look good. I tell them sometimes I hurt so bad inside. My husband doesn't understand this. So I know exactly what you saying.

posted June 6, 2015
A MyFibroTeam Member

I* really wish (maybe this is a nasty wish)! that the powers that be who determine our worth, or non-worth to society could not only deal with the day to day issues facing those of us with FM, dealing with government, Dr's who think you are malingering or lazy, everyone else who thinks just because you do not LOOK disabled therefor you aren't really disabled and actually have to endure 6 hours inside our skins.....Hell, six hours is excessive for a normal human, maybe two hours....

posted June 6, 2015
A MyFibroTeam Member

Along with the others, it sounds interesting. I hope that something good comes from this. Keep us posted.

posted October 18, 2016

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