Diagnosed with fibro and connective tissue diease!
#228454 - 12/01/05 08:59 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Well, I finally had my appt with the rhumatologist (SP??) this morning. He was very nice and pulled up all my records. He did a complete exam and said I have fibro and I'm in the beginning stages of connective tissue diease.  It explains a lot though. The memory problems, the insomnia, the ringing in my ears, dry mouth, iritis, tendonitis, bursitis, fatigue and joint pain. He said there were a couple of blood tests that should have been done that weren't, so he did them. One is of particular concern (I forget the name of the diease now) but it crosses the placenta and can cause heart defects in unborn babies and can also cause miscarriages.
He gave me another cortisone shot in my hip for the bursitis but won't treat me until after I'm done breastfeeding. I'll see him again in 2 months just to see how I'm doing but not too much he can do right now. He said its critical that I don't get over tired. Kinda hard when you don't sleep well. They made me stop the Ambien when I got pregnant but I've been taking Unisom, more for morning sickness but the dr said to continue taking that everynight to help me sleep better. I have a lot of swelling in my joints and he was a little concerned about whats going to happen when I get REALLY pregnant with these twins because of all the added stress on my joints. He also told me to expect bed rest before this is all over.
Thats about it. I guess I can join the others here in the fibro club now  
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Taking it one day at a time.....
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Hey there, that sucks but at least you know!
I REALLY recommend that you register on the message boards on www.butyoudontlooksick. There are people there with both Fibro and all kinds of connective tissue problems AND people who are or have been pg with these illnesses.
If you want any Fibro tips, just let me know! Can you take Tylenol atm? I know it's very low-key but really helps to take the edge off the pain esp. if you're taking it throughout the day. Are they keeping the bursitis diagnosis?
I have to say tho...this makes it sound like you're even more likely to be off work soon.  You'll need to be napping through the day if you can't sleep at night or you could get really ill.
Oh and Mark Pellegrino has some great tips for pg women and new mom's with Fibro in his books. 
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I'm sorry Michele but it sounds like you've had it for some time now so hopefully it's a relief to know what it is?
It's still amazes me how many ibs-ers have fibro?!! 
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Michele!!!!
Well, I'm sorry you have fibro...
But I'm glad you know.
What is connective tissue disease (if you don't mind explaining)?
Magnesium malate helps me sleep at night. If you can take that it might be beneficial.
Can you do your TENS unit while pregnant?
How are you feeling today? TRY not to worry about the future...and take it moment by moment. And take sugar out of your diet as much as possible...helps me with the pain.
And if you didn't want any advice...just kick my franny ok?? 
Ask anything Michele! We all love you and want you to be as comfy as possible! *hugs*
Feel good...sending you fantastic sleep, no pain, and loads of feel-good days *gentle hugs*
Ruch
P.S. I LOVE Linz's idea re. that website...it ROCKS! 
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Formerly known as Ruchie
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Geez!
#228469 - 12/01/05 09:47 AM
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epa_ginger
Reged: 02/23/05
Posts: 1158
Loc: Chicago, IL
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Glad you finally got a diagnosis, but what a pain (literally) do have to deal with all of that, WHILE you're in your first pregnancy. Well, just do as the doc says and rest as much as you can.
No pregnancy news from me, , I thought I did really good with "trying" this month, but I sort of started to get my period Monday, which #1, was about 6 days early for me (my cycle is closer to 31 days usually, NOT 25!!), and #2, it's been really only spotting...and just barely. This is TMI, but I only notice when I wipe, and it's barely there, and I haven't worn anything. Most of the time when I wipe, nothing. So I'm utterly confused!!! 
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IBS-D. Hiatal Hernia, GERD
Unstable
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Wow honey I had no idea that you were dealing with all of those things. But I guess when you wrote them down I do remember you mentioning those problems. Well at least you got a diagnosis and bed rest is not uncommon for woman pregnant with twins. Remember how tough those babies are and how they have defied (sp?) all the odds so far! Hang in there sweetie and keep resting and thinking good thoughts!!!! Love ya!
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Um you know early spotting like that could be a sign of implantation bleeding. If you don't start a regular period soon I would take a pregnancy test! That has happened to me before!
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Ok, I just looked that up, and from the description, it sounds like what I have. Trying not to get my hopes up though, this month was my first real attempt and I know the chances of it happening are low. But I don't have my regular period symptoms...like, where was my week of intense eating? Or cramps? Or tiredness/crankiness? I'm going out of town until Tuesday and I did bring 2 tests with me, so I guess I'll see. Thanks for the tip!!
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TRY not to get your hopes up too much tho. Remember that alot of people miscarry very early on (if you're not looking for a pg it just seems like a heavy, late period).
Thinking good sticky thoughts for you tho! I can't wait to join the "trying" club!
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Thanks Linz. I'll definitely check out that web site! I can take Tylenol if I need to but I've been doing without. The general achiness isn't too awful right now, it was mostly my hip and I'm hoping the shot he gave me will help. I am afraid that I will be spending a lot of time in bed before these babies arrive! I've been trying to save up extra money to cover the expense of me not working for a while so hopefully things won't be too difficult. As long as my babies are born ok, I can deal with my pain.
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Taking it one day at a time.....
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Thanks Tina. Yes, I'm sure I've had it for some time now and it is nice to actually have something to call it. The dr this morning wouldn't comment on if there was a connection between IBs and fibro but your right, a lot of people who have one seem to have the other!
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Taking it one day at a time.....
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I'm sorry that was the diagnosis, but so glad you are now with a doctor that can diagnose and treat properly! Especially now that you are expecting!! Hang in there and keep us posted!
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God is Faithful!
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Thanks Ruchie! Connective tissue diease is basically a catch all term for a degeneration of the connecting tissue in your body. There are lots of specific dieases and syndrome that fall within this umbrella term but he hasn't narrowed it done yet for me. It bascially means the tendon, legiments and my joints are staring to deteriorate. Thats probably why I'm so prone to injuries and sprains. I don't fully understand it all myself to be honest.
I'm sure I've had these for a while and I'm very upset with the RE (fertility dr) that I was seeing for not running some of these tests. My new obgyn (the high risk dr) was rather shocked as well and the dr this morning just shook his head when he reviewed my file and saw that these things weren't followed up on. I'm trying not to get upset by things that were done (or not done) in the past and concentrate on the future. As long as my babies are ok, I can deal with everything else.
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Taking it one day at a time.....
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Re: Geez!
#228517 - 12/01/05 11:51 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks Ginger. I agree with Angela, the little bit of "spotting" you've had very well could be implantaion spotting!!!! If AF does show up, be sure to keep a calendar with all this info. If your cycles, specially your luteaul phase runs shorter than 10-12 days if can be a sign of a luteaul phase defect and can be corrected with hormones. I'll be keeping an eye out for an update from you! Good luck! Sending some fresh baby dust your way!
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Taking it one day at a time.....
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Thanks Angela. I'm sure I've had this for a while now and I'm resigned to ended up in bed before the babies are born so I'm ok with it! We've really got to get together soon!!
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Taking it one day at a time.....
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oh michele! you poor thing.
thats a lot of crap to put up with. do they think that is what was causing all of the miscarriages?
Take care of yourself!
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Thanks Ashley. Its very possibility the cause of the miscarriages. There is a specific diease that causes heart defects in unborn babies inutro, I forget the name of it, but he ran some blood work to check for that also, just in case.
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Taking it one day at a time.....
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Wow, Michele! I'm sorry to hear that. At least you know what you have, though, so you can better understand your treatment options.
Big hugs! Get lots of rest!
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Christine
Those who can do; those who want it done better teach.
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I'm glad he found the fibro, etc.! I hope it's not a burden having "more stuff" wrong... I know it was for me when I first found out, but I'm glad now that I know! You have a lot to deal with and you do it with dignity... and I'm proud to be your friend.
~nelly~
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Good luck, Ginger! Don't get your hopes up, but you never know!
I have learned so much about my cycle in the past few months, it's ridiculous. We're not trying, but my body has had some trouble regulating since going off the pill after almost ten years on it. I really want my body to be ready when we decide that we are.
Anyway, good luck!
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Christine
Those who can do; those who want it done better teach.
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Good Grief, Girl!
#228601 - 12/01/05 03:15 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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When is your life gonna get back on track? OMG, I can't believe this....
Do you remember "LS" (LauraSue)? She has fibro, as well as JenX, and both of these gals have left the IBS Boards. JenX hasn't gone to another support board, but LS has. I don't know the website, but it's a fibro support board, and when she first joined, she said it wasn't as good as our Boards here, but it's very supportive. You might check out the internet and see what you can find. I wish she was still here to help you.
I'm rootin' for ya, Pretty Lady.
Bevvy
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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*Gentle hugs*
#228604 - 12/01/05 03:27 PM
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melitami
Reged: 02/23/04
Posts: 1213
Loc: Ewing, NJ, USA (IBS-D, Vegetarian)
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I'm sorry, but happy for you that you got a diagnosis! Fibro isn't fun, but your rheumy sounds great, and like he should be a valuable resource. The only thing I can add is heating pads and hot showers are the best things for my fibro pain! And Mac bought me the best thing ever last week as an early Christmas present - an electric matress pad. It's like sleeping on a very low set electric blanket. Might be a good thing to look into for when you're stuck on bedrest later, I think Mac found it for $30 at Linen N Things for our full size bed.
And I second ButYouDontLookSick! I'm on those boards as well!
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Melissa
Friendship is thicker than blood. ~Rent
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I don't know what to say. Please take care of yourself and that precious little baby. I know this is gonna be tough but I'm sure you can pull it off.
Hugs
Barbie
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The good news is you now know and you can do something about it AND you have those precious babies to focus on right now.
It's nice to have answers isn't it? I do wish I lived near you...I would help you in any way I could. I got to hold a little baby at church Wednesday night...I didn't hear much of what the pastor said but that baby was loved on reaaall good!
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Have a blessed day!...Rachel
stable and sooooooo thankful!
I have IBS but it doesn't have me!
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I am glad I checked the boards today....but I had no idea! You poor thing I am glad for the diagnosis, and hopefully some great help from that doctor in the future. You have tons of support here too. It definately does explain some things, and that's always nice to know that there is a reason you're feeling that way. Hang in there sweetie! <<<HUGS>>> You have been through enough this year -- 2006 is going to be great for you!!!!!!!!!
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~Cara~
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Oh yes, there are a few: Linz, Nelly, Ruchie, Christie, JenX, Laura Sue, you...etc.
Please get advice from those who have it on the best treatment. They'll know probably better than most doctors.
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Thanks Cara, it certainly does explain some things, doesn't it! Aw well, at least I know I'm not going crazy! LOL!!
I just logged on and won't have too much time on line today but I hope theres an update from you somewhere! If not girlfriendm you'd better email me! I know you've been on bed rest so I haven't sent you anything but I'd love to hear from you when you can!
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Taking it one day at a time.....
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Thanks Rachel! Yes, I wished you lived closer too! I'm really doing ok right now. Will has been a doll. He keeps the house tidy anyway and has been doing most of the cooking and shopping. Its all I can do to work all day. Overall though, I'm starting to feel better as I enter my 2nd trimester! I swear that my belly is growing an inch a day. I couldn't see my feet in the shower this morning!  I plan on taking some pictures this weekend and post them Monday!
I'm glad you got to love on a baby the other day, even if for a short period of time! I'm sure the baby was just as happy as you about it too!
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Thanks for the support Barbie. Overall nothing has really changed. It just answers a lot of questions and at least I know I'm not going crazy! LOL!!
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Thanks melissa! We have one of those tempurpedic foam beds thats super comfy and we aren't supposed to use heating blankets with it but thats ok as I tend to run hot anyways! Although I have been know to sleep with my heating pad when my IBS is bad. I've been told no heating pad on belly right now, it'll cook the babies! But, luckily, my ibs hasn't been too bad lately. I did have the heating pad on my lower back a few nights this week but I think thats ok for short time periods.
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Taking it one day at a time.....
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Thanks Bevvy! Yes, I remember both the girls and its a shame they left, I mis them both. I know several of the other girls here have fibro as well. I do plan on checking out the support boards the other gals mentioned, hopefully Monday I'll have time to do that!
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Taking it one day at a time.....
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Aw thanks Nelly, you're always so great! No, I'm actually a bit releived to have a diagnosis, I was being to think I was a hypocondriatic (SP??) The diagnosis explains a lot and it helps to know its not all in my head!
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Thanks Christine, yes it helps knowing what I have. We will wait until after the babies before starting any sort of treament but at least I know what it is and that its not all in my head!
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Taking it one day at a time.....
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I think that's what LS and jenX were on. It's not as upbeat as these boards and I couldn't take it...so here I am
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Formerly known as Ruchie
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It is def not in your head, and now you have independent verification! I know that feels good for me!
We IBS-ers-slash-fibromites all need cool silk jackets for our gang, I mean club. Like the Pink Ladies from Grease or something. Yeah.
~nelly~
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Formerly known as Ruchie
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Melissa
Friendship is thicker than blood. ~Rent
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...but we'll be the coolest sickies on our block.
~nelly~
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BYDLS is alot more upbeat for Fibromites (or anyone with a chronic invisible illness).
www.butyoudontlooksick.com
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HAve you guys seen them on the BYDLS CafePress shop? They ROCK!
Man I love that site. It's just loads and loads of funky fun chicks like you guys (and Sarge! )...rather than depressing people!
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Oooh, I like that idea, pink silk for the gang, ah club! Purple is nice too though! 
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Taking it one day at a time.....
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I popped into the BYDLS site for a quick second and it looked a bit confusing. I'll have to check it out again when I've got a few more minutes!
P.S. I'm ALMOST to the 2nd trimester and I haven't puked in days now!!!!!!! YAY!!
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Taking it one day at a time.....
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... BYDLS boards .
Then Register (button in top right of screen - you may have to scroll right). Then once that's done, post on the New Members forum . And you might want to post in the Recently Diagnosed forum .
Oh and here is a link to the Spoon Theory!
HTH! You'll get the hang of it soon. Most baby discussions are in the Parenting / Family Life forum. The Happy Hour forum and the Unlisted forum (right at the botton of the overview page) combined are like the LivingRoom here. There's a CFS and Fibro forum and then separate ones to discuss meds, tests, doctors, etc.
Basically there's just alot more separate forums than on here.
HUGE congratulations on both reaching this stage and on not puking!  Here's hoping it'll just be 1st trimester ms or you!
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I'm sorry, Michele -- that sucks! But, at least now you DO know what's going on, and once you have your babies you can get more treatments and hopefully get to feeling better!!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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ohhh, I just saw this. Wow, Ginger, that would be so awesome!!!! I really hope that's the case. Keep us posted!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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