A Survey of Fibromyalgia Patients’ Journey to Diagnosis and Treatment.

Fibromyalgia Survey and Research

Fibromyalgia Survey and Research

 

We have been asked by Pamela Andrews at PhD student at Glasgow Caledonian University to help her find people with Fibromyalgia to help her with some research.

Andrews writes ” I am a PhD student within the Health and Life Sciences department at Glasgow Caledonian University. I am conducting a study into the journey patients take from presenting with their first symptom through to receiving a diagnosis of fibromyalgia syndrome and subsequent treatment.

The study requires participants are aged 18 and over and have received a diagnosis of fibromyalgia. The study will involve an online questionnaire, which will include a series of surveys asking about the journey leading to a diagnosis, what happened immediately following and what treatments were prescribed by your healthcare provider and which ones you researched yourself.


The purpose of this research is to understand the patient journey from the initial symptom to diagnosis and subsequent treatment. Following the diagnosis, the study aims to examine the treatment pathways made available to you and the experiences you have had with this along with the effectiveness on symptoms.

If you agree to take part in this study, you will be asked to complete an online survey, this survey will ask about:

Journey leading to a diagnosis
Immediately following the diagnosis
Treatments prescribed
Treatments tried

It will take approximately 20mins to complete. Questions asked will either involve selecting from a few options or a sliding scale, in addition you may be asked to give brief responses. If you feel you need to take a break at any time, the survey may be saved and you can then return to it at a later date.”

The link to the survey can be found here.

For more information Ms Andrews can be contacted at pamela.andrews@gcu.ac.uk

Many thanks in advance for your help!




Fibromyalgia – Would you wear a purple tie to help us raise awareness of Fibro? #tie1on4fibro

#tie1on4fibro

#tie1on4fibro


Would you wear a purple tie to help us raise awareness of Fibro?

Simple as that really.

Please would you answer yes or no in the comments section below. Even better when not share a picture of you in purple tie below!

Thanks and Tie One on for Fibromyalgia!




Gluten -Do you have an intolerance or allergy to gluten?

Free from Gluten

Free from Gluten

A couple of days ago I was reading one of our Facebook pages when I can across a discussion on the subject of the relationship between fibromyalgia and gluten intolerance. From the conversation it seems that many people with either fibromyalgia or multiple sclerosis have found that excluding gluten from their diets has significant benefits.

Adding to this avoiding gluten has recently been suggested as a therapy for autism .

So I was wondering how common gluten intolerance was among my readers. It would be great if you could take the poll below to help us collect some data. It would be great if you could mention your main conditions or syndromes in the comments section below. Any comments on how diet has helped would also be very useful for our readers.

So please feel free to share any part of your gluten story!





“Tie One on for Fibromyalgia!” Wear a Purple Tie to Help Promote Fibromyalgia Awareness #tie1on4fibro


Please wear a purple tie to help promote fibromyalgia awareness

Please wear a purple tie to help promote fibromyalgia awareness

One of our supporters has shared this great picture of her wearing a purple tie to help raise awareness of fibromyalgia.

We have launched a campaign to promote fibro awareness called “Tie One on for Fibromyalgia!” with the hashtag #tie1on4fibro.

It would be really great if you could share this picture on social media to help us raise fibromyalgia awareness. Even better it would be great if you could share a photo on social media with the hashtag #tie1on4fibro. Also could you add the photograph in the comments box below. If that proves a problem please send it to patienttalkblog@gmail.com and we will put it up on your behalf!

Many thanks in advance!




Fibromyalgia Awareness Day May 12th 2016 – please share this Facebook cover on social media

Fibromyalgia Awareness day 2016

Fibromyalgia Awareness day 2016

As many of you know this Thursday is Fibromyalgia Awareness Day.

We have prepared a Facebook cover in honour of all those who live with fibro. It would be great if you could use it on your profile and share with friends and family to help us raise awareness of the day.

It would be great if you could use the comments section below to inform our readers of any events which are being planned to mark Fibromyalgia Awareness Day!