Facebook Groups of Long-Ago Lumigrate Supporters Whose Focus is on Fibromyalgia (and the Overlapping Etceteras).

There were a few women who had FM as part of their identified medical scenarios that I found networking on Facebook back in the formative years of Lumigrate who started group pages.  Here it is five years after we 'met up' there, and they're still going strong and really found their 'grooves'.  

I wanted to provide the links to their pages so that our YOUsers might find what many think are the best groups on Facebook about this subject. Naturally, these are just a few I'm aware of overall, and are getting set aside on a thread now to honor the history of the length of time they've been at this, and how far back it was we all encountered each other in what was really a 'heyday' on Facebook for people with all kinds of medical or other concerns. Information boomed, groups boomed too, and in a way diluted momentum in some ways but then also allowed for a lot of different places doing similar things so you could find a 'best fit'. 

Facebook Fibromyalgia Patients Unite! is a group started by Kathy Howell, which has 4,592 members as of my writing this on 2Sept2014, and this is the link: www.facebook.com/groups/FFMSPU/  Here's an example of something from her that I posted in 2010 in the forum on fatigue as it was a nice example of education information and how she does things, hoping that people might follow out and find her FB group if they were so inclined: 

 

Whittemore Peterson Institute XMRV Research

To members of FACEBOOK FIBROMYALGIA PATIENTS UNITE!

 

Kathryn Meredith Howell February 3 at 9:16am 

The following is a link to a question & answer session on the XMRV retrovirus. They are conducting research, & this link clarifies a lot of information.

http://www.wpinstitute.org/xmrv/xmrv_qa.html

Hope all are well, and "weathering" the cold weather, for those in the Northern Hemisphere. Hope that those "down under" are enjoying their warm weather! We up here are ready for the spring to come. 

Take care all, and be well.

Kathy

 

Clarissa Shepherd is the founder and admin on the "Fellow Travelers Because We Have .... " group, which on 2Sept2014 when I write this has 2,312 members; the link is:

www.facebook.com/groups/Fellow.Travelers/825937580774153/

I would say that this group is more of an education with lite support group format. You'll notice the word Support Group is not in the title, nor is Education --- Travelers Because is.

This is a comment Clarissa had made back at this long-ago time I am referring to when we met up via Facebook, it was on a thread I'd started about a book I recommended about an integrative appraoch to fibromyalgia, by my personal MD from before he was using the "F" word, and I was diagnosed and treated for chronic fatigue (which was 1997).  This gives a good example of what you'll find at Clarissa's group on FB, as well as letting her book at Amazon, Find Your Way, have another shout-out here. 

I have had good results with Acupuncture in helping with the fatigue , brain fog and pain . I have a section written concerning this at www.amazon.com  FIND YOUR WAY  by Clarissa Shepherd. You may take a look at the inside book view.  There is also an herb called Moxa which helps with at home use and is lit on the end like a cigar and you hold it about an inch from points on your body to help with energy. Read about all from my step by step guide.   Blessings to you.

 And this is what you'll find at one of the topics in this same forum, from Aimee Shannon -- in a group that has 3,338 members as of today (2Sept2014), so please go and see the nice conversation that flowed from it at the original place she created it here at Lumigrate.  It was a good example of what we had in that 'really good year' or so from people (mostly women) with fibromyalgia who were taking the time to write on Lumigrate, before they found other places to be putting their efforts or perhaps having 'differences' with what Lumigrate was about, naturally I only know what people will verbalize and I need to then read between the lines.

Which is fine, as long as people are finding the information they seek, and those wanting to be activists / professors (professing things), I've gone with the flow of things and just appreciate what comes for Lumigrate. I'll just say that when people have disability and are not trying to work and have the time and inclination to do the activism, that is of so  much benefit. And we can hope everyone can find solutions and reverse things and get back to work, if that is what is best for them.  From Aimee, in this forum, as I said: (with the link in her signature as you'll see, to find Support Groups by Aimee on FB) -- 

"Thank goodness you're on disability!!", a chiropractor said to me yesterday.   

Thank goodness?  That my income is a third what it used to be?  That I can barely function some days?  That I'm still grieving the loss of the career I'd always wanted?   What was I to 'thank goodnessing' for again??

I know! Thank goodness that I have the time and energy to do the advocating I am in our area.   Ohhh... now I get it.  And it's a valid point!

I spent several days this past week delivering flyers for the upcoming educational program that I've arranged with a sponsor.   In and out of my car, all over town.  Into offices of professionals I know and many that I don't.   Saying again and again who I am, what this is and why we're having it.   We're having it because there is still such a lack of information available for people about fibro!  That is more clear to me every office I went into.

A massage therapist asked, rather aggressively, if I believed massage was appropriate for fibro.  I asked, "does someone say it's not?", with shock on my face.   A doctor in an integrative wellness office told me he'd ban his patients from attending as 'medications are evil'!   I reminded him that 'integrative medicine' included allopathic medicine and I would hope, of all people, he'd be more open minded and this seminar wasn't "about medications".    And a chiropractor said "thank goodness you're on disability"... did he mean it the way I'm hoping he did or was it some negative comment on all the work I'm doing while "living on the dole"?

It's hard to know someone's intentions behind their words when we don't know them, or even when we do. I'm choosing to take his words as a positive, that he is happy that someone has the time and ability to put together these kinds of seminars.   It's been lacking in my corner of Ohio; fibromyalgia might as well be called the "F" word for how it's always whispered and eyes roll on hearing it here.   Why is that?  I think it's the lack of education, plain and simple.   So I'm doing some things to change that.   

It's not been easy.  I'm sore from all the times in and out of my car, my legs burned after walking into offices and waiting for someone to speak to me.   I spent a lot of time making lists of where I needed to go and directions so as to be more efficient and effective with my time and energy.   It took a lot of work to even schedule the seminar, although I've learned and know how to do it better the next time!  But doing this has left meexhausted; mentally, physically and emotionally.  

Thank goodness I'm on disability, I can rest tomorrow!