Nelly
#150739 - 02/16/05 09:37 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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I think a support group is a great idea, I'm game. But any ideas on strumming up others. I try not to inform people of my fibro or ibs b/c it raises eyebrows if the person knows about it like I have lepracy (sp?) or something and if they don't know then they want an explanation. I don't know which is worse. And us fibromites look normal even though we feel like we have 90 year old bodies. So I don't know how to find fibromites in our area. You can't spot'em and they are probably not gonna tell ya. I know JenX is from the baltimore area and she has fibro also but I think she has been really busy lately as I haven't seen much activity on the Maryland IBS Support Board which she moderates.
We could kidnap Ruchie from Arizona and Linz from the UK and Laura Sue from ...I can't remember where she is from right now. Darn Fibro Fog!! Anyway then we would have an awesome group.
We could try to set up a meeting and try to get JenX to come too and go from there. 
Let me know,
Christie
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Christie
~Hoping and Praying for Sleep!~
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I'm totally game!
#150755 - 02/16/05 10:14 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Let the kidnappings begin!  I'm going to try and make Linz's support group meeting in England while I'm there! I hope she's pretty close to London becuase my friends are going to be like, "Where's Nelly off to now??"
Too bad there's not a fibro board on this site. Maybe I'll get my BF to whip me up a site and I can start my own. Now that would be cool! But yes, how to find other fibro chicks? You're right, as Seinfeld would say, "It's not like spotting a toupee!"
So maybe a board is really the way to go. I'll look into it. In the meantime, I'd love to meet for some tea somewhere if you're game! But you're right we'll need to find some more people and def convince JenX to come!
Hey-- question for you. Ruchie just posted that she's gained a bunch of weight when she took amyltriptaline. Are you on it now? Do you get any side effects?
~nelly~
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Nelly,
Ya know there is a board on Fibrohugs.com maybe I will wander over and check it out. I don't want to post anything asking if there is anyone in Baltimore/Washington area that wants to form a support group right off the bat or they will probably think I am some crazy lurking on their boards. But maybe they have a support group section on their boards like we do. I'll get back to ya on that.
About setting up a meeting I am one of those people who can never make a decision, drives my hubby crazy!! So you name the time and place and I'll be there unless its a big schedule conflict or something.(Which I doubt no life have 2 kids lol!) The best way to contact JenX is by e-mail she is not on boards much lately. I think her e-mail is in her profile??? Have to check?
Amyltriptaline? Probably about the only thing I haven't been on or am not currently on. I keep complaining to my doc that my biggest problem is lack of sleep which makes my body fall apart. He isn't listening as well as I would like. He keeps increasing my dosage of Effexor XR and swears it will raise my seriton (sp?) levels and help me sleep. Hasn't worked. And then he prescribed Flexaril which is a muscle relaxer that supposedly has a drowsy effect. Only problem is I still have trouble falling asleep but then can't get up in the a.m. b/c I am so groggy. I am on a slew of other things for my IBS, I take about 8 or 9 different pills a day or at least I was I just stopped b/c I don't think any were helping. Now I only take Nexium for my GERDS, SFS, Naproxen as needed, and Flexaril supposedly to get some sleep. Considering I felt like I pulled a muscle at work today just from reaching over the table to turn a page I would say I ain't doing so well!!
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Christie
~Hoping and Praying for Sleep!~
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Naproxen doesn't burn up your tummy? That's Aleve, right? I can't take it cos it'll send me into an IBS fit that lasts for days. The others I have all heard of except for the Effexor XR-- is that an AD? I was on a couple of ADs but they made me so depressed I was suicidal so i had to be taken off of them pronto.
The amyltriptaline I take only to go to sleep, although it's perscribed to depressed patients to take during the day in higher doses. It's not addicting as other sleep aids, and it boosts seratonin! It does make me a wee bit groggy in the morning though, so that might not work for you if you have to be up. 
Yeah, let me know about the other board you mentioned. Laura Sue mentioned Fibrohugs to me once, and I went there but it seemed a little sparse. It would be great to get one with a bunch of fellow IBS-ers from this board! Nothing like having a built in group of friends already there!
~nelly~
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Hi ladies!
I think someone in Baltimore just recently started a support group for fibro through fibrohugs...if I'm rememebering incorrectly...I blame it on the frog fog! 
I was just thinking this morning how great it would be to have a fibro site! For some reason (maybe it's just me) there was something dark about fibrohugs that made me stay away. The IBS boards are so alive! One of the things I love about them!
Yeppers Nelly, the amitryptaline made me gain weight *sigh* It also made me VERY sleepy when I first started taking it. Is it helping with sleep? I hope so! *hugs*
How are you doing Tissy? *hugs* It sounds like the frog's got ya.  Let me know if there's anything I can do.
I'm SO groggy today! Definately got the foggies! I am fighting the urge to take a nap....but I'm not so sure I'm gonna win this one
Hope you two feel good!
Linz, LS, Jen X, anyone with fibro...join in!
Love, Ruchie
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Formerly known as Ruchie
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Naproxen
#150795 - 02/16/05 11:40 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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Yes it is a high dose of Aleve. I am IBS-A but mostly D so I have to take 3 immodium AD with it. That is why I only take if absolutely necessary like when a migraine attacks. And I usually have to follow up w/ NuLev which is an anti-spasm thingy??
Effexor XR is an AD and it is supposed to help w/ IBS and the Fibro but I didn't notice any difference. And as far as mood changes it didn't effect me either up or down. So I stopped taking it.
I have to take kids to school in a.m. so I get up at 6:30 and then after I drop them off I have to go to work. So I need something that helps me sleep but doesn't make me groggy. I have a follow-up appt. today w/ doc will discuss sleeping issues AGAIN.
You are right about Fibrohugs I thought it is to hard to navigate not user friendly buy I think LauraSue said she posts over there. So I will try it. Maybe Heather could add another section to this board for IBSers w/ Fibro or actually I guess that should be Fibromites w/ IBS b/c I read the IBS is a symptom of fibro but not all IBSers have Fibro. If that makes sense??
Just curious are you not working due to the fibro or are you just between the last job and the one where you will work at home? I thought I read that post somewhere about you working from home??? I would love to work from home w/ this darn fibro, I am working on that goal.
Christie
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Christie
~Hoping and Praying for Sleep!~
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Hey Girl!!
#150798 - 02/16/05 11:49 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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I am having trouble sleeping again, my mind keeps racing. I had this prob before but it went away for awhile. I am asleep but I can remember analyzing and thinking in my head all night long. FRUSTRATING!!! So know I am achey and pulling muscles doing the stupidest things like turning pages. Can you get workman's comp for that?? Just Kidding!
I will go to Fibrohugs and check out support group, thanks for the tip. And it's not just you that site is all dark colors and dreary and this site is nice soothing colors w/ cheery borders. It just feels more welcoming on this site.
I am sorry to hear that you are having a groggy day as well. I thought the Flexaril was making me groggy but now thinking about it I am groggy pretty much all day until I try to go to sleep at night. I could sleep all day but can't sleep at night. Do you feel like that??
How is everything else Honey? Are you having a flare or just a groggy day?
(((HUGS))) back atcha,
Christie
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Christie
~Hoping and Praying for Sleep!~
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Tissy, take a day off *hugs* I wish I could take over for ya 
YES! At night I finally seem to "wake up"! LOL It's so strange! I guess it'a ll part of it htough huh?
I seem to be in a flare the past couple of weeks. I know if I weren't tkaing vitamins and eating so healthfully I would be in horrible shape
((((Tissy)))) Be careful! When I start getting like that I'm dangerous   I've been known to drop things, break things, spill things... *sigh* stupid frog!
Let me know what you find on fibrohugs...I hope they have something for you!
Oh, do you take a multivitamin and vitamin c? How about echinacea and astragalus? These things REALLY help me (but chedck for interactions on the supplements to make sure they don't interact with the meds you're on). I probably take close to 6,000mg vitmain C a day when I'm good about it. It's truly a huge help for my firbo! The Prescription for Nutritional Healing recommends taking these things for fibro...it also recommends 5,000-10,000mg vitmain C a day!
Anyhow...I hope you feel good soon *hugs*
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Formerly known as Ruchie
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I am not working at all right now cause of fibro ANd hubby and I are not trying to have children for the same reason!
I don't know how you all do it!?!
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Formerly known as Ruchie
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Melissa
Friendship is thicker than blood. ~Rent
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