Luci, I am so sorry to hear about your mom and send you positive thoughts and strength to work with this situation. Please keep us updated and let us know if there is anything we can do. Hugs x 10000
Thanks to all who were able to join in on the call. For those who missed it, Michelle will be posting a summary for you to take a peek at! If you have any questions after reading her minutes, we are happy to fill in the blanks.
Summary of today's call - if I have anything wrong, please let me know.
Claire, Mic, Laurie, and Michelle were on the call. We introduced ourselves and gave a little information and we enjoyed getting to know more about each other. We discussed the "Fibro 101" guide which we envision to be equal parts informative and supportive. Claire talked about upcoming site changes. We will be changing the main discussion page to be organized by categories instead of by most recent posted. Claire will be posting a discussion regarding this change this weekend in order to prepare the members. This should help people easily navigate to the main topic they want to discuss. Claire will be setting up a gmail account accessible to all fibro moderators where we can post our sections for review / edit. Claire will work on setting this up sometime this weekend. When editing each others' work, Claire reminded us we should be honest but supportive, we need to build each other up and not tear each other down.
Claire has the first 2 sections written (see page 1) and is finishing 2 more sections and plans to put those 4 sections up under the "Fibro 101" section next weekend. We all divided up the remaining topics and the goal is to have some of them written in the next 2 weeks so we can add those as well. As soon as we have rough drafts written for the topics, we will post them in the gmail account so we can all review / edit. We should be writing this so that it is easily understood. If we use medical terms, please define the term and also if you use abbreviations (I.e. FMS) you need to define it first before using.
Topic Assignment:
Intro to FMS - Claire - Done, to be posted next weekend
First appointment - Claire - Done, to be posted next weekend
Diagnosing FMS - Claire - To be posted next weekend
Treating FMS - Michelle - To be posted in 2 weeks
FMS action plan (form) - Claire - To be posted next weekend
Symptom diary (form), Apps (requesting member input) - Claire - To be posted in 2 weeks
Medications - we decided to start with the most commonly used medications - hopefully to have this done and ready to post in 2 weeks: Savella (Claire), Cymbalta (Claire), Gabapentin (Michelle), Amitriptyline (Laurie), Trazadone (Laurie), Flexeril (Michelle)
Opiates - overall introduction to opiates (Mic), Benzodiazepines (Claire)
Exercise- yoga, tai-chi, walking, water classes, exercise classes for people with arthritis, some doctors offices offer classes too, physical therapy (land and aquatic) – benefits, 3 times week – (Michelle) - to be completed in 3-4 weeks
Emotional Wellness (Laurie and Claire) – To be completed in 2 weeks
Coping with grief - Claire
The New Normal - Claire
Managing with Depression and Anxiety - Laurie
Stress Management - Laurie
Sleep, Fatigue, Sleep disorders - Michelle - To be completed in 2 weeks
Complementary Medicine – acupuncture, massage, mindfulness (Mic) - to be completed at a later date, approximately 3-4 weeks
Alternative Medicine – herbs, diet changes, vitamins - This will just be a section where members can post and we will moderate for appropriate (non-sales) content
In the future, we would like to add info for Canada and UK member reference, Mic can work on the Canadian info and we will look for a UK member to assist (MikeJudd?)
Claire reminded us to review appropriate references (NIH, Mayo, ACR, Medscape, Medline, MedlinePlus, drug fact sheets from the manufacturer, webmd, Rheumatology.org, drugs.com). If we quote a source directly, we should credit them but if we compile the info from different sites and write it for our group that isn't necessary.
Ok, I think that is the main gist of what we discussed / decided. Claire, Laurie, Mic, please correct anything I've listed incorrectly. It was nice talking with all of you today!
HI,
Should we include some information about juvenile fibro. I have read quite a few times from members who were diagnosed when they were younger, and I know that some pediatric med sites do discuss it. Just a thought. Thanks for considering.
You did a great job!!! Three cheers for you. It looks great, but I must admit with my fibro memory, I may not be the best to give a definitive review, but it all sounds familar, so that's good right??? LOL. Thanks Michelle. Was it a lot of extra work? You really did do a fabulous job!!!
Michelle, you did a terrific job of the summary! Thank you. 
And thank you I definitely want to do a Stress Management section possibly within Emotional Wellness. I think I may need more than several weeks as I intend to incorporate member contributions in my sections as I am able. Can we say at least 3 weeks for my areas?
Just a few additions to summary… We had also discussed a Suggested Books section and Helpful Apps section and making sure the Recommended Doctor area is more easily accessible as well as discussion on medical disclaimer being prominent on the site. Something else I had thought of afyer our discussion is that perhaps diagnosis section could include some info. on diseases Fibro is often mistaken for or vice versa as well? MS, Lupus or other rheumatological conditions… It may beneficial. What does everyone think?
Mic, I like the inclusion of juvenile Fibro in the guide. We have seen more and more young members and it certainly seems it would be beneficial.
Good work all!!
I like the idea of including the overlapping illness like Lupus, etc, that can be mistaken for fibro or vice versa. Great idea. Thanks Laurie.
For now, why don’t we do the first three topics for “Emotional W” plus Sleep, etc under the number 2 release? Then that’s only an overview of managing anxiety/depression to be written by the next release in two weeks. Really, the expected dates are guidelines for us to follow. If it takes longer, it takes longer. If we have at least 3 items to list under each topic, I feel like we can go ahead. We will find items that need adding on a regular basis, so we don’t have to have the fully formed guide mapped out completely. There will always be updates in medicine that we will want to include. Let’s try to get what we can up before the second week of November. Anything left will wait until after holidays.
Under diagnosis, I thought I had included some rule out diagnoses. If I didn’t, I will, or I’ll make what is there stand out more or stress it’s importance better. If we get bogged down with too many different articles and sections, it can seem like too much to wade through. If there are ideas like this that can be combined with another article, let’s try to do that. Clear and concise to avoid confusion.
Juvenile FMS (good) can wait until after the holidays. I don’t want to be Debbie Downer, but we have a Lot of work on our hands right now. So, let’s just post any ideas here, and address them after 1/1? Along with that will be SSI, looking for a friendly Canadian, and Brit, and something else I’m sure I’m forgetting. derp!
Hi Claire,
I can only speak for myself, but when I suggest something be added to the Newbies guide I recognize that we have a lot on the go and I am just putting this here so the idea doesn't get lost of forgotten. So thanks for the consideration, but my suggestion can wait.
I agree that these are guidelines and if we need more time, then we take more time. I am also aware that the holidays are coming up and if we can get some of this done as support for members at this time all the better, but not the end of the world if we don't.
Wishing you and everyone a great evening.
One major thing I forgot to mention that I really really really like on the PsA site is the resource link / information on how to get free or reduced meds. I would like to see that added to the Fibro 101 guide as well. That could be a major benefit to the members.
Yes, thanks Laurie, we did discuss the books, apps, and MD section, good to add that as well. And I agree, I like the idea of adding juvenile fibro at some point to the guide. Hugs.
Thanks. I just cut and paste the outline from here into a word doc and then I used my speaker phone as we were on the call so I could type notes onto the outline and then just cut and paste transferred here in a summation. Not too hard as long as I can be hands free during a call. I don't write well (holding a pen is painful) but typing is better most of the time as long as my wrists aren't acting up.
I can change the med names out so that they apply to fibro and just post the same article here. If I do it that way, it won’t take very long. You are 100% right. It should be posted here.
Maybe I’m projecting my worry a little, and that’s why I feel the need to keep stressing we should take our time. Things like this can grow a life of their own and get so big so quickly. It makes me a little nervous. This is the last time I will mention it…I promise.
It's okay if you mention it again :). I think we all need reminders about not taking on too much, so really I don't mind. And you are so right, these things can take on a life of its own, burn out the volunteers and little gets done, so your planned approach is wise. Hugs and smiles.
Mic, you honest soul you, you can speak for me any day, hon!
I also have posted here for matter of having a holding area for ideas, etc. I am in no hurry to rush anyone or impose! 
Claire, thanks for emphasizing Fibro rule outs. And thanks for your wise words and hitting the brakes a little. Big picture thinking is welcome. No worries please. I have no objections to slowing down and doing a second release including my share of the Emotional Wellness sections.
Michelle, great idea to include free and reduced rate meds guidelines.
Laurie
Thanks again, Michelle. I shocked myself in remembering those things. Lol.
I finally got around to reading this. Excellent work, Claire. Really marvelous! I can't wait to see more from you all!