fibromyglia

so you get paid for being a moderator or admin on a fibro chat?  Is that seriously for real?  Lots of wacko things, ya know take surverys, but never get any $.

hi h weston nope i dont get paid for being a mod some do ,no surveys either just a chat site and u can post stuff up .i sell my cards on there and therers a organs page ,nateral stuff etc hope that answers ur quiry

Hey Sara,

I decided to check out this website on your recommendation!!  I have had FM/CFS for 16+ years now & have really been thru the ringer!  Not to bore anyone to trears, but I have had several "plateaus" for lack of a better word over the years. 

My last Plateau was about 2 yrs ago in June when I had a very nasty flare up & when it eased up, I began to have trouble walking.  I used to walk 1 mile every day.  now I can barely make it to my car.   I now use a cane. wheelchair or scooter, depending on how far I have3 to walk, or how high my pain level is.

I also have many other medical problems, the newest 1 being a heart problem!  I'm still fighting cancer, diabetes, just to name a few of the biggies.

I've been in a "flare" now for nearly 7 weeks, (didn't know they could last that long!) & I'm fearful that this is another "plateau" & when it's over, I'm gonna lose more of my walking ability!!

I'm scared to death!!

Is this supposed to be a "vent & share " board or what??  Not really sure why I'm here, but if Sara says it's a good site, then I believe it!

Regards to all of you & big soft hugs!

simbrina aka/Caprese~

Hi -- glad to see Sara was suggesting Lumigrate and that you found us Simbrina.

Lumigrate.com is a work in progress -- launched this spring so it's a matter of seeing what people want and need.  You might see that there is a 'Topic' in this fibromyalgia forum area for people to share 'Your Story', simply as a way to group up the content.   I can start another topic for 'what has helped, what has not' and a 'funny things we do due to fibro fog' (popular on our facebook page) and 'a place to leave your frustrations' area. Right now I was in here looking to put an area for recipes and cooking strategies as there was interest in that, and I'd like to put that under nutrition instead of just the fibromyalgia area, as Lumigrate is about all kinds of health topics, as you see.

We'll just all figure it out together! Mardy

Hi Simbrina,

Tell me more about your history and I'll be glad to infuse any thoughts that might help.  Few questions...

1)  What is your thyroid status?

2)  Are your familiar with adrenal fatigue?

3)  What medicines and supplements are you taking?

4)  How did you FM symptoms start?

Best,

Dr Rollins

A new friend on Face Book was so nice to send me this link to the article about my book and my story. I don't know how to do these things and am so grateful that she was so kind as to do so. http://www.aawmag.com/story/14352 Finding Your Way through Fibromyalgia and Chronic Fatigue

I share many techniques which help with symptoms.

I really like the way Angela writes. For those who are short on time and energy, it's effective and streamlined and appears to me to be valid.  The one thing I wanted to add is that Dr. Rollins just came back from a 4 day class in San Diego in November ALL up on IgG food allergies and apparently beans are now known in that paradigm to be causing an autoimmune-type response in the gut of many people, as our genes just are from eons of Paleolithic people who didn't have beans in their diets.  And we only had a brief conversation, but my impression is that beans were more at the top of the list of problem foods than even dairy and wheat which are the top ones I believe.  It's a busy season for everyone and he's no exception but I will let him know this area is evolving rapidly and that I've tried to address these things and hope that he'll make it by soon here to add for YOU to know more than you did before you were here reading. 

Nice Job Angela ... for someone who was saying she didn't know much about how to set these kind of things up, you sure RAPIDLY got a very professional result.  Maybe it's the good website!  (And that's a bit of a joke between us as people think I know a lot about computers and software and in theory I used to but now I just get by.  BUT I did add Forum areas all by myself today and didn't even look at my notes AND I didn't goof anything up either!   Can you get SMARTER at solstice maybe?  Mardy

Mardy you are too funny!  (And of course it's the great website!)

Beans, beans, beans...

We can't use some of the gluten-free mixes because they use pea or bean protein, and my daughter can't tolerate those products.  My son and I still eat beans once in a while, though.  I thought that was an intolerance unique to her.  I guess I need to look into that a little more.  If you find out more about the beans, please let me know!   

Thanks and Happy Holidays!

I  have editing a comment after receiving an email through the website from the poster saying it was inadvertently 'flagged' and she was I guess trying to do a private message maybe.  SO I'm going to very much edit it.  AND the link to a new Topic I started as a result will be at the bottom of this comment.

The comment was I think asking about Lumigrate loaning money for medications people cannot afford.  The writer is a patient of a large, well known nation-wide fibromyalgia and chronic fatigue program/company.  Between regular pharmaceuticals and compounded medications which insurance does not cover some of, the average costs are $1,100 to $1,200/month and leads to picking and chosing each month which meds to keep up on ordering and taking and some not based on 'which medication was most important'.  "I do not take all the medications my doctor has prescribed for me."  "I am wondering if this is slowing down my success in this treatment."

I'm going to go ahead and get this posted sooner than later and come back and respond more, as I do have thoughts and a response.  Thanks for the coming to Lumigrate to ask this.  Mardy

That Link: www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#comment-302

Sabrina, I have had this approx 3to4 yrs, but have been diagnosed at the Mayo clinic in10/2008. I have not had any peace from this and I have mostly bad days. I sleep 3to5 days every week or every other week. I have trouble walking as I have very poor balance. If I get down on the floor to play with my grandkids I need help getting up off the floor. I am very clumbsy and drop half of everything I pick up.

When do you get to the point of having flare ups and the rest of the time you are normal?

  I've started writing a blog about my FMS and new adventure of  going gluten free. I don't have celiac (thank goodness) but breads and pastas do make me not feel so good. I get bloated and constipated and my stomach will growl for hours. Since cutting out most gluten I have already noticed an increase in energy, my stomach has deflated and I am loosing weight and have noticed a bit less pain. I am allowing myself some gluten because I haven't figured out a way around it yet and I am the type that needs baby steps. I am allowing myself to eat unleavened breads i.e tortillas and wraps, and gravies and ice cream! That's about it though. Hamburger/hot dog buns are gone, regular bread gone, regular pasta including ramon (and you all know I love ramon) all gone.