I am looking for people diagnosed with fibromyalgia for short telephone interviews.

[anruan23]

Hi, I am doing a paper on fibromyalgia and would like to be able to interview 15-20 diagnosed people by phone or 15 minute video call next week.

If you are so kind and interested, could you please let me know your phone number or email here or privately.

Regards and thank you very much.

 

[cookiebaker]

i am sure there would be people interested but posting personal information publicly is frowned upon (and most wont do that)
and to access private messaging here you need to post a minimum number of times before that becomes active.. and they should be meaningful posts, not just trying to gain post counts.

 

[sunkacola]

anruan23, cookiebaker is correct that we do not post identifying information here, and you will have to have been posting and conversing with people here for a while to get access to the private messaging.

I suggest that you start out by explaining in your posts what information exactly you want to hear, what questions you intend to ask, and how this information will be used. I would like to know these things myself.

Why is the video call needed? Can you get the answers you want from people here in the forum instead?
It is pretty risky for people to give someone they don't know their phone number in a forum even if it is a private message, and then allow recording of a zoom call without knowing how that video will be used. But that will be up to the people here if they want to.

Don't know if you will have time to get private messaging access by next week, which is why I am asking you if getting your questions answered here wouldn't work instead. I suspect that if you post a list of your questions, you will get a lot of people willing to answer here in the forum. I would, as long as they were not personal questions.

 

[cookiebaker]

i would also be willing to answer questions, as long as there is nothing personally identifiable asked.

 

[MissValkie]

I wouldn't mind answering some questions either so long as there is nothing personally identifiable asked. Asking the questions on here may be easier for you as you'll probably get many responses compared to the few private messages.

 

[anruan23]

Thank you for answering, I have deadlines to meet and I just thought I would look for forums and facebook groups to find people diagnosed with fibromyalgia.

These are questions about what your day to day life is like just since you have the disease and everyday issues, it is to know the different profiles of patients with fibromyalgia.

I live in Spain and it is very difficult for me to find people from other countries.

Any recommendations?

Regards

 

[cookiebaker]

I live in Spain and it is very difficult for me to find people from other countries.

Any recommendations?

recommendations have already been made.. post reasonably specific questions here and let us answer them for you.
other countries or even regions within other countries is not terribly personal, so i dont see that being a problem
as an example, I live in the USA, in the state of Wisconsin.. but there are close to 6 million people in Wisconsin, so not a big deal to share that.

 

[MissValkie]

I'm from the UK so I imagine there's a whole mix of people here from many different countries. They ruled fibro here as a disability. Day to day life can be a challenge, but probably quite different for everyone. Different things work for different folk. It does involve a lot of trial and error and many funny looks from those who don't get it.

 

[cookiebaker]

not easy to get disability with a fibro diagnoses here in the US, but it is possible.. I think it has a lot to do with any comorbidities, and their severity, and the doctor(s) you are working with.
I was just recently approved for disability here.. but I also have cervical & lumbar spine issues, arthritis, as well as a few other things, so.. it all adds up.

but sharing info would be a lot easier if there were specific questions to be answered..

 

[Feee]

I would suggest you giving us your email and we could contact you to schedule a meeting on Zoom / Webex without having to share our phone number

 

[anruan23]

Ok!!! my email is [removed by admin to protect user]