CONVENTIONS FOR THOSE WITH FIBRO.

Discussion in 'Fibromyalgia Main Forum' started by pirtpain, Apr 29, 2006.

  1. pirtpain

    pirtpain New Member

    I know that there are conventions throughout the country where experts and drs. talk about FM. Are there ones for those of us with the disease? I know that those of us who are not working anymore may be strapped down income wise, but I would like to go to one if they exist. Please let me know your thoughts.

    PIRT

  2. srh

    srh New Member

    There are conventions for FM. There is one in Kansas around the 12 & 13th, because I was thinking of going, but I just can't take the time. I think I just threw the sheet away thur. or Fr.

    I'm sure it's on the FM Aware website. I think its
    www.fmaware.com.

    I'll go look and make sure that's right. Wish I hadn't thrown it away.

    Boy was i wrong. Here it is. The site was www.fibroandfitigue.com.

    The Fibromyalgia Coalition International proudly presents the 6th Annual Fibromyalgia & Chronic Fatigue Awareness Conference on June 2-3, 2006. The conference will be held at the Marriott Hotel in Overland Park, KS and is featuring several powerful speakers including Dr. Nancy Russell, Stephanie McGillivray, Fatima Lowe, Dr. Jacob Teitelbaum, Dr. Jack Ferguson, and Dr. Joseph Brewer. For more information on the upcoming conference visit www.fibrocoalition.org or call 913.384.4673.


    [This Message was Edited on 04/29/2006]
  3. FMsolider

    FMsolider New Member

    Can't believe I never thought of it. We need to do something to make these conventions/fibro health expo more excessable and widespread. Also is an excellent way to raise awareness.
  4. thirkmom

    thirkmom New Member

    I must have a weird sense of humor but for some reason a convention for those of us with fibro got me chuckling.
    1. By the time we traveled to get there we wouldn't be able to get out of bed until it was over.

    2. Instead of regular chairs they could put massage chairs in for us.

    3. Cancel massage chairs--that would put us to sleep and there wouldn't be any one left to hear the speakers.

    4. The speakers would have to hand out their notes in big letters just in case the old "fibro fog roles in"

    5. We would have to have breaks every 10 minutes for those of us with restless leg syndrome and to wake up the people in the massage chairs.

    6. We wouldn't be able to break for lunch because we might not find our way back and those with IBS would need a free hour.

    7. If they want a good crowd they should schedule the speakers for 2:00 a.m. That's when every good fibromyalgiaite is up pacing the floor and trying to find something to take the pain away. "Like food".

    8. The snack break would turn out to be the pill break--pain meds, xanax, muscle relaxers, anti-depressants, etc. etc.

    9. Could they come up with enough people that believed fibro wasn't all in our head to speak?

    I got a hundred of stupid comments--I just can't remember them. Feel free to add a few of your own. We could have quite a funny list, I'm sure. It's 3:00 a.m. and I can't sleep--feeling a little punchie right now. Thanks for putting up with me. LuAnn.
  5. patches25

    patches25 New Member

    When I lived in Seattle area, I went to several international fibromyalgia conventions. (SFIT -- been a while I think it stood for Seattle Fibromyalgia International Team).

    At the first conference I went to, Dr. Robert Olin from Sweden was one of the speakers. He has seen thousands of patient diagnosed with FM and CFS. What I can still hear him saying when the question was presented "Does anyone recover from CFS?", was that to his knowledge that about 2% recover and he wonders if those that recovered had the correct diagnosis. That hit hard because I was so much looking for treatments and recovery.

    Dr. Paul ST. Amand was a speaker, Dr. Garth Nicholson a speaker, Dr. Goldstein a speaker as well as numerous other very well known people in this subject. Oh, Dr. Nicholson was escorted in and out by police and we were not allowed to ask any questions. He had many threats since he was dealing with the Gulf War problems. Such an intelligent and knowledgable man!

    The conference hall was equiped with about 6 or 8 massage therapists. One could get up at any time and go for a brief massage. The people seated was the squirmiest bunch you could ever hope to see. People had brought cushions, water, snacks but the aches and pains were hard to deal with. It is very hard to sit for an hour without a break. People would getup and lean against the wall, and pace around.But the material presented seemed impressive and yet I came away with some knowledge but not a way to get well.

    The conferences I attended were in the mid nineties and sometimes I feel we are still spinning wheels with the lack of recognition and lack of really good research.

    I did enjoy meeting new people. If you have never been to a conference such as this, you will never forget it. E.
  6. ckzim

    ckzim New Member

    Your post got me laughing so hard, I had visuls going on in my head of each situation... Oh way too funny!
    Just wanted to say thanks for putting a smile on my face today!
    KathyZ
  7. jyl

    jyl Member

    I really needed a good laugh today!

    jyl
  8. ThinkPostive

    ThinkPostive New Member

    There will be a free program on the subject Fibromyalgia.

    "Fibromyalgia Is It All In My Head" on May 9 2006 at 7:00 PM in South Hill Virginia if anyone is interested.
  9. jenni4736

    jenni4736 New Member

    I cracked up when I read the topic. No offense, pirtpain, but I can't imagine going to something like this and making through the first hour. If you can...more power to ya! Not me man...

    I GOT IT!!! We can send our spouses, kids, bosses,and other well meaning family members! They can get a good understanding and take notes for us...ooohhh WAIT... I could probably get more usefull info on this board.

    My daughter keeps offering to push me around in a wheel chair.... she tries. She doesn't get that I would be exhausted by the time I was ready to go...besides, the convention would be in a new town by then.HAHA!

    Thanks for the laugh!

    jenni
  10. megchampagne

    megchampagne New Member

    The FM Queen of Comedy, she is.

    Please, you must write more... It is a total help!
  11. thirkmom

    thirkmom New Member

    Thanks for your kind thoughts. Maybe you shouldn't encourage my humor but then on the other hand we could have our own comedy central--you guys have posted some stuff that got me a laughing. It seems that no matter how much pain we're in or how tired we are--we are still able to laugh at ourselves. Isn't that is a great commentary on those of us who have fibro and CFS. We are survivors and we have courage because we can laugh at ourselves in the face of some horrific symptoms. That's why we survive.

    We have Christmas all year round at our house. I buy stuff and hide it so no one will find it (not even me). Then I'll clean out a closet or something and I'll be darned, "that's the shirt I bought my hubby 2 years ago". He used to think things like that weren't funny, but he's had to change his tune because it happens so often. He tells his friends and co-workers now and they just laugh.
    Thanks everyone for your support. Each one of you give so much back to me amd you probably don't realize it.

    I mean no disrespect about a conference on fibro I think things like that are important and needed to get the latest opinions and research out to the very people who need to hear it. I could just see ME trying to endure a day of meetings and that set me off and away I went.You guys are great.
  12. carebelle

    carebelle New Member

    Thats kinda funny because I use to do alot of volunteer work and went to conventions until I got so bad from my CFS and FM .I had to give it all up and I miss it and the people very much.
    I love your humor about that ,I must have look like a crazy person ,the last time I went.I'd get lost going to meetings ,I'd forget peoples names and yes I'd spend lots of time in the bathroom with IBS.I needed a month to get over the stress of that week.
    But think about this our Uniform could be PJ's we could start the meeting in the evening and pass out packets with Ideals about how to get to sleep,Detox and herbal treatments.Think about the bag of goodies we might give to our members? what could we get from the Drug companys to put in the bag to advertise CFS and FM ?oh I forgot how could I carry a bag my arms hurt to bad.Maybe instead of a hotel we could rent out a hospital and just all put our beds in a circle and stay in them for a week.Oh well Im not funny but its good to laugh and get my mind on something other then my pain.
  13. Greenbean7

    Greenbean7 New Member

    You crack me up! I love the break to wake up the people in the massage chairs!!

    I couldn't even imagine trying to get there let alone go to any meetings.

    I went to California a couple years ago to film an infomercial (I live in Washington state). I flew down on Friday afternoon and we shot on Saturday.

    They called some of the gals Saturday evening to come in form more taping on Sunday and it's a good thing they didn't call me! I was pretty good Saturday night, but woke up with a horrible migraine on Sunday.

    Got up at 6, took Imetrix and Fiorinal, and went back to bed until almost noon. Great black out curtains in a hotel! It was almost like night.

    I would have had to be on the set at 6. Travel just isn't much fun anymore and I haven't gone on a trip since except in our motorhome.

    Hugzz
    Greenbean
  14. jenni4736

    jenni4736 New Member

    I hope my "HUMOR" came through on the previous message. I meant no disrespect... I do think that ANYTHING to make one more person aware of this DD disease IS a good thing.

    I have a warped sense of humure I guess. I just had a warped visual of us all there... and I HAD to make a wise crack.

    The sad thing is, we don't have the energy...our family members get tired of hearing about it...and our doctors (and I use this term LOOSLEY) - well... we know they already KNOW IT ALLL!! HAHAH!

    jenni