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Old 11-15-2012, 01:45 AM   #1561
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Well it seems like I can never get on my computer lately unless its to pay bills . Sorry its been so long since my last post my phone died giving me one less outlet to chat. Anyway new phone and completely insane schedule. Both my son and youngest daughter had birthdays in Oct. Then came the storm which we were so blessed to get 10 inches of rain but no loss of power YEA!. Did set me back two days to prep for a 10day outage that was forecast. I feel so bad for all those families near where I grew up.

Basically I am all over the place. Had to go off diet due to kidney pain but am back on it and lost another 3 lbs. House is cleaner and more organized than ever and ready for my friend and her 4 yr old to stay while we go with dd8 to Disney: next week. However, I have stable days where whole chunks of day just feel like the bottom falls out in such a way it scares me. feels like I'm falling off a fibro cliff . I find a way to rest and it stops but I cant help feeling its an omen of a really bad episode like the one I had 4 yrs ago where I even had heart problems they cant explain. Mostly I ignore the symptoms til I cant .

Well in less than two weeks I will be in wdw to watch dd dance in the parade. Would you believe they didn't have the steps ready for the little ones 8/9 til last week!!!! dd learning her steps well but omg this is quite the way to start her dance team experience at wdw and soooo little time to prepare. we are practicing every am for half hour or so and then again in afternoon. Cant say she isn't ambitious since this was what she asked to do Monday morning after her first real practice of her second routine. First routine is for the parade and they all do the same thing then they break off by age and do two specialized routines. I think the actual routine is supposed to be secret so I will keep my mouth shut for now

please send out so pixie dust for my dh. His Lyme is not improving and they will not give him more antibiotics even though they said if he was symptomatic they would. He has symptoms(pain/fatigue/irritable) and 3x normal titer yet they halted treatment (?????). Now we are like a really old married couple fighting over nap times and how much pain we are in LOL. I really worry if this trip will be too much for him making my fibro worse to boot. Tomorrow he sees another Dr. hopefully he can get on a real course of antibiotics long enough to kick this. I don't think it would take long ( maybe 6 weeks) but it has to be consistent not 10 days on 4 days off 14 days on 30 days off 14 days on....duh they made him antibiotic resistant by giving the bug a chance to grow in between doses. They say he cant have more because he SHOULD feel better but if he had a ear infection and the blood work said he had an infection and he still had symptoms they might switch meds but not stop them! But with Lyme everything says infection and they say nope not possible (HUH????) .

Hope all of you are doing a bit better. It seems like this has been a rough year for many of us here. I feel blessed to have had a productive year I can be thankful for. I just wish I could chat more with you all and talk a. bit more to family and friends on the phone. I seem to have gone months without talking to many people at all. Just no energy. It all went to my kids this year which isn't bad just a bit isolating.

Wish us luck with DR . hopefully I will post around Thanksgiving.

Sending pain free vibes and pixie dust to all!
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Old 11-19-2012, 03:07 PM   #1562
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Bonnie. Thinking of you and DH and the family.. Throughout it all, Dr, WDW..

1) Happy to hear you didn't have much damage.

2) I hope he saw the other Dr, and has something to help...That sounds incredible rough...

3) Wishing you all a MAGICAL trip, and hoping the stepss are all ready, and you all can take it at your own pace.... And lots of pictures

4) I hope you can get a little R and R in before you go. IT is always stressful prior.

Sorry for the numbers, it is just that kind of day
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Old 11-22-2012, 11:06 PM   #1563
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Happy Thanksgiving!
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Old 12-02-2012, 06:50 AM   #1564
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Hi all-I am new to the thread but not new to fibromyalgia. I was diagnosed about 5 yrs ago. However if has always been "mild". A lot of joint pain but treated with medication and felt great until recently. I have had major stomach issues . A lot of tests to be told IBS. I never really did a lot of research on fibromyalgia but started looking to see if this is fibromyalgia related. I am so overwhelmed right now cause it appears a lot of issues I have been having keep going back to fibromyalgia . So can you recommend good books and am books on FODMAP diet. I guess it is time for change. I have been up since 2AM due to IBS flare up. Guess I need to take my head out of sand and deal with this. Long post so sorry. Jenn
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Old 12-02-2012, 06:52 AM   #1565
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Duplicate post.
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Old 12-02-2012, 10:32 PM   #1566
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hi jen
my ibs is triggered by my food allergies, as im in the uk, i dont know how ur medical system works, but can you get tested over there? im allerfic to alot of foods, seafood, fish, onions and pineapple are my worst triggers...

i too as diagnosed with fm recently (may) and am struggling to come to terms ith the effects it has on my day to day life, to top it off have had flu for a week and feel drained (tho one good side effect was that i got a weeks sleep... back to the insomnia again for me... hey what else do u do at 330am but dis?? lol!!

my only advice is to keep a sense of humour, easily said but i have got to the stage i cant cry anymore, so now i have to smile (oh and keep a good book in the toilet for flare ups!!!
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Old 12-03-2012, 09:21 PM   #1567
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Hi guys back from Dance the Magic trip with DD. I will catch you all up when I can get to my computer.

Jenn WELCOME!

I was never diagnosed with IBS but when I first got sick I had awful stomach pains. Was tested for allergies but had none. After two yrs of taking double the prescription dose of zantac I read something online about garlic tabs. I figured what's the harm? I began taking a garlic supplements morning and night. In a few months my pain was gone and it NEVER came back! This began my supplement route to treatment. If you look back I have posted on supplements many times. I still take a few meds but for me supplements work better than meds but it is by no means a cure just takes the edge off my crazy symptoms. You will find that each of us has our own unique path to relieving symptoms . For me meditation, relaxation techniques, pacing activities and supplements have taken me from bedridden for two years to functional enough to do the basics for my family with ALOT of support from my husband. Learning your bodys unique patterns is key. If you cant find old posts through that answer your questions. I'll be back in a day or two and the gang here is GREAT! We have been having a tough year though so sometimes it takes a day or two for people to get back.

Pain free vibes and pixie dust to you all!
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Old 12-03-2012, 09:41 PM   #1568
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Thanks for the responses. Well, I was laid up all day on Sunday. I felt like I had a truck run over my stomach. I was able to get an appt with my rheumatoid doctor. GI doctor wants to increase meds and i am reluctant. I trust my fibromyalgia doctor, so glad I can talk with her tomorrow. I am going to do the elimination diet to find my IBS triggers.
I look forward to hearing others stories. Jenn
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Old 12-04-2012, 12:36 AM   #1569
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Hi Jenn, it can be so overwhelming indeed. I don't have any help specifically with IBS. Can you ask for a specialist? Glad to hear you like your Dr, SO important. How was the appointment?

Tigg. CAN"T WAIT TO HEAR ALL ABOUT IT


I saw my Dr today for some results. I had a little pity party, and am just accepting what is. My results for my memory tests are quite bad. It is permanent damage, and they suggest counseling to learn how to adapt and deal with this. Many other tests were poor, but I guess the sound of anything permanent, and they don't know if it will continue sucks to me, at least today it did. I see my Neuro on Thursday, and will try to remember what I forgot to ask today, as well as ask for a copy. My Dr said he was happy? to read the report, and that it does have some play with my insurance, that 90% of reports state depression causing this, but mine is completely void of that, and he states that it is good proof for me. I think I am exhausted and rambling.



I start physio and Ergo therapy 3x a week this week. Hoping for the best, and have a positive outlook. I was supposed to start last week, but it was a bad week pain wise.

Thinking of everyone...Gentle hugs to all
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Old 12-05-2012, 09:22 PM   #1570
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Went to rheumatoid doctor on Tuesday morning. She feels that my stomach issues may be related to the Relefan. I am trailing going off of it. We will see. If I cannot make it without it then my prilosec will get increased to combat the side effects of Relefen. We will see. I really really like and trust her. I always try and go with the least invasive methods first. She saw my mouth was very dry and I did not tell her. She is just gresy, just very intuitive. Anyway, I am hopeful again that I will get this bad spell pushed to the curb. Thanks for all the support. Jenn
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Old 12-10-2012, 02:23 PM   #1571
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Quote:
Originally Posted by 5 at disney View Post
Went to rheumatoid doctor on Tuesday morning. She feels that my stomach issues may be related to the Relefan. I am trailing going off of it. We will see. If I cannot make it without it then my prilosec will get increased to combat the side effects of Relefen. We will see. I really really like and trust her. I always try and go with the least invasive methods first. She saw my mouth was very dry and I did not tell her. She is just gresy, just very intuitive. Anyway, I am hopeful again that I will get this bad spell pushed to the curb. Thanks for all the support. Jenn
Well Jenn my Fibro brain did it again
I posted to your responce within minutes of you posting...however I did it through my phone upon reading an email transfer from Dis. I responding via email which I know doesnt work but....anyway here is a copy of my responce 5 days late

Jenn

Thats great! A place to start. Sounds like your rumey is a keeper. Always better to take the less is more approach since more usually has a price to pay. You might want to look into things to support your stomach/urinary track health to decrease pain. Probiotics, cranberry juice and the garlic I mentioned before might be places to start. Sassy water is great for water retention and bloating..tastes good too! I posted recipe quite awhile back.

I haven't had a dr I can partner with like that in a very long time. Mine has been fine to keep me stable, allowing me to keep the meds that work for me. Unfortunately during my last visit my Dr. seemed to show he wasn't really looking for a solution just falling back on depression/anxiety which luckily for me I have never had. So I need to have a frank discussion this month and possibly look for another Dr. I can't be helped right now but I definitely think there is/will be something and I don't want to miss an opportunity to get better because I have a Dr that has given up. It has been 18yrs and I haven't given up yet!

good luck coming off the meds. I had a hell of a time back when I took meds on a schedule. took almost a yr to fully come off ativan my body got so dependant on it that the pain was AWFUL. Luckily i knew that was a sign I needed to get off not go back on. Two yrs later I used it again briefly found it worked great and so now all my meds are "rescue" meds. I never take them more than a week or so in a row on a consistent schedule (like on vacation) the rest of the time I use them only when I just cant stand the pain anymore and relaxation/meditation techniques, showers, bengay etc just cant keep me moving anymore. Not a great way to live but better than being an addict. Dh has been taking celebrex for his lyme disease and it has helped alot. Anyone here take it? I took its cousin vioxx and it made me mean...like raging at a toddler mean so I got off asap. Considering asking for sample of celebrex since its $100 month copay. I don't want to pay and find out in a week it makes me crazy angry. It would be nice to have something I could take everyday. My experience has been nothing works on same dose more than a month or two then I need to go up and risk addiction or come off and take as rescue med...and so it goes

Jenn let us know if the lower meds work for you.

Sending pain free vibes and pixie dust to all!
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Old 12-11-2012, 10:07 AM   #1572
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I used to take Celebrex until the insurance copay got so high. Hoping when kids are out of college I can afford it again!
I really liked it. I have side effects from so many meds and I didn't with Celebrex. I was happy on it, as it relieved some of my pain and put me in a better mood.
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Old 12-11-2012, 10:33 AM   #1573
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[QUOTE=Earstou;46901601]I used to take Celebrex until the insurance copay got so high. Hoping when kids are out of college I can afford it again!
I really liked it. I have side effects from so many meds and I didn't with Celebrex. I was happy on it, as it relieved some of my pain and put me in a better mood:

Im glad it worked for you but sorry you had to stop it!

The cost is the delemia for me. My dh can function at a near normal level on it but this will not get me back to work just help stablize my days. $90 co pay is high! I guess I have been in so much pain for so long that I have got used to dealing with it on a mental level, using visualization and distraction on a professional level . If im honest with myself i have to admit that while it does work that level of concentration is exhasting and if it is broken by fatigue or say a child running full force into me a bad cascade effect happens that can quickly force me to bed or as in the later put me to the floor in a puddle of pain.

Our finances are getting better so the only excuse I really have is that I dont put myself first because I feel guilty by how much my FMS is always impacting my family. Guess trial run is in order.
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Old 12-11-2012, 10:39 AM   #1574
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[QUOTE=Earstou;46901601]I used to take Celebrex until the insurance copay got so high. Hoping when kids are out of college I can afford it again!
I really liked it. I have side effects from so many meds and I didn't with Celebrex. I was happy on it, as it relieved some of my pain and put me in a better mood:

Im glad it worked for you but sorry you had to stop it!

The cost is the delemia for me. My dh can function at a near normal level on it but this will not get me back to work just help stablize my days. $90 co pay is high! I guess I have been in so much pain for so long that I have got used to dealing with it on a mental level, using visualization and distraction on a professional level . If im honest with myself i have to admit that while it does work that level of concentration is exhasting and if it is broken by fatigue or say a child running full force into me a bad cascade effect happens that can quickly force me to bed or as in the later put me to the floor in a puddle of pain.

Our finances are getting better so the only excuse I really have is that I dont put myself first because I feel guilty by how much my FMS is always impacting my family. Guess trial run is in order.
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Old 12-25-2012, 06:38 PM   #1575
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MERRY CHRISTMAS!

Wishing pain free days and boundless energy for Christmas and the year to come!
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