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Old 08-16-2009, 01:17 PM   #61
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brighteyes

I would give you the same advice my Dr gave me. Have your kids . If we find a way to treat or cure the disease and your too old to have kids then you will regret it. If you have kids you will always find a way to care for them. It may be hard but its a lot harder to have kids as you get older. She also told me most of her Fibro pt's went into some sort of remissions. That was true for me each pregnancy. It brought a 75% remission at around 4 months that lasted 6 months post pregnancy just long enough to care for a newborn. My Drs joke I should just stay pregnant because I love it so much! I will say though, each time my full blown symptoms started to come back I would cry because it was like seeing a train coming at you that you could not stop from running you down. It is also harder when you have an older child that does not nap anymore. My migraines are triggered by sounds, light and lack of sleep so that is an issue with kids. We have from time to time had nanny's come in to help especially with housework which kills me. My husband also took full paternity leave and was able to work from home when my symptoms were bad (he is a social worker). If you have a plan it will be worth it. Although some days I say "what was I thinking!!" LOLROTF
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Old 08-16-2009, 05:26 PM   #62
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Bonnie--glad to see you back and to see your positive attitude!

As for me, I've been doing pretty good the last few days on my low-gluten diet, then "splurged" on a roll for brunch. Interestingly, I am now having pain in my feet that I haven't had in several days. So--no more bread for me!
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Old 08-17-2009, 03:42 PM   #63
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Do you go completely GF? Or how much do you reduce? And how long did it take to see a difference?
Thanks

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and Welcome! to all the "newbies"
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Old 08-18-2009, 06:28 PM   #64
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Thanks toocheri! afraid not to positive today my mind is with me but my body is screaming. It is hot and VERY humid in Pittsburgh today and we dont have AC! Our house doesn't need it but a few days a year so its not worth putting in but ugg!
On a better note I had an Eye appointment because I had developed an occasional blind spot in the center of my eye which is a new symptom. I have complicated migraines and have had foggyness and loss of vision from the side for 14 yrs now. ( Oprah had half a face one day! ) I also have difficulty speaking sometimes from these "Auras" that never coincide with the headache ..go figure. Dr says eyes perfect especially for my age but I have a "bad brain"..well duh! Anyone else have these symptoms?

On the Diet note If I go almost carb caffeine free I feel alittle better but I find it impossible to stick with something that means I'm stuck with eggs or grapefruit and other citrus as my main breakfast options. Caffeine also helps my pain med's work better. Does the Gluten free diet restrict all carbs?

Well hogged the thread long enough pain free vibes and pixie dust to all!
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Old 08-23-2009, 02:25 PM   #65
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Hello

who would think you are researching Disney and you find people who suffer just like you do. I am 55 and have suffered for better that 25 years. I started with the headaches and paralaysis of the face joint pain and fatigue. next was diabetes now i have problem with the tendions in my feet retracting and the arches are falling. So I am here for support. we leave for Disney in 2 weeks and I a, so scared I will not be able to do this
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Old 08-23-2009, 02:57 PM   #66
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Hi There Nitewarrior!
I know what you mean I was terrified I would ruin my kids first trip to Disney with a Major crash.

If you have a very specific plan geared to your needs you should be fine. I used Ridmax and don't think I would have survived without it. It allowed me to plan which rides to go on when so that we had the least amount of walking and waiting in line. Only twice did we wait more that 5 minutes in line last May . I hear tour guide Mike is good too. Don't forget to get your Guest Assistance Card in case you need help in line etc. I cannot stand for long periods and have great difficulty with temp extremes so I had one in case I ran into trouble with an outdoor line or extremely long line. Luckily that was not a problem because of ridemax. I don't know If you have started packing but I was done packing two weeks before we went and spent the majority of those two weeks in bed. Last year we tried three times to go on vacation and I had to cancel the day before each trip because by the time I was done packing my body was done! This year I didnt allow anything to be scheduled for those two weeks and let everything go an I made it!

Have a great trip look foraward to hearing how it went!
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Old 08-23-2009, 03:29 PM   #67
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I just found this thread and am glad I did....

I am 38 have fibro amongst other issues and am living in constant pain. I have been on lyrica through to hydrocodone and am currently on cymbalta (I just cut down the dose to one a day). I have terrible nerve issues (neuorpathy) and it is exhausting at times. I live in fear that this is going to make me lose my job and push through during the day only to crash at night... I am a single parent so that is not an option for me.

I have investigating bypass to help with weight loss as that should help my symptoms and despite my efforts to be proactive with exercise and diet it never works. I have gained over 100 punds in the last 18 months.

That feels good to get it out there... no one in my life to really talk about it with - my son is 10 and I do what I can with him and we look forward to WDW because I actually feel better when I am down there - maybe it's the weather or pixie dust but I do feel more like the old me.

It's nice to meet all of you.
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Old 08-23-2009, 09:47 PM   #68
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Originally Posted by Tweevil View Post
That feels good to get it out there... no one in my life to really talk about it with - my son is 10 and I do what I can with him and we look forward to WDW because I actually feel better when I am down there - maybe it's the weather or pixie dust but I do feel more like the old me.

It's nice to meet all of you.
Hi Valerie--it's nice to meet you too! My name is Cheryl . . . . .

just fyi--bypass is not necessarily going to help--honestly I had it in 2001, don't eat that badly and have never completely lost the weight. I know I need to exercise . . . . . but it's hard.

I have had fibro since college days and have good and bad days. I think I have a "milder case" than some of you but have also struggled with fatigue the past couple of years. If your doc hasn't done it, please have him/her check your labs--it turned out I was anemic from the bypass and that was part (but not all) of the cause for the fatigue.

Anyway, welcome and I'm glad you've found this community.

Cheryl
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Old 08-23-2009, 10:20 PM   #69
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brighteyes

I would give you the same advice my Dr gave me. Have your kids . If we find a way to treat or cure the disease and your too old to have kids then you will regret it. If you have kids you will always find a way to care for them. It may be hard but its a lot harder to have kids as you get older. She also told me most of her Fibro pt's went into some sort of remissions. That was true for me each pregnancy. It brought a 75% remission at around 4 months that lasted 6 months post pregnancy just long enough to care for a newborn. My Drs joke I should just stay pregnant because I love it so much! I will say though, each time my full blown symptoms started to come back I would cry because it was like seeing a train coming at you that you could not stop from running you down. It is also harder when you have an older child that does not nap anymore. My migraines are triggered by sounds, light and lack of sleep so that is an issue with kids. We have from time to time had nanny's come in to help especially with housework which kills me. My husband also took full paternity leave and was able to work from home when my symptoms were bad (he is a social worker). If you have a plan it will be worth it. Although some days I say "what was I thinking!!" LOLROTF

Well I probably would consider having more if I wasn't single. I have been single for awhile so the probability of a pregnancy happening soon is pretty close to nil. Ha, I'm just saying.

What I was saying is, that as a single mom, it is my number one worry that I continue to support myself and my DS. Additionally, I am in college to try to ensure a better job for the future - because I am really scared that I will not be able to continue to work one day. I have one more year of college left and it is the hardest program - besides nursing - and it has been really hard on me. My illness has progressed two fold since being in college the last two years. I am really dreading this last year.

I wish I would have had more but it is not in the cards for me.
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Old 08-23-2009, 10:32 PM   #70
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[QUOTE=tiggspring;33182825]Hi everyone. I finially made it back. This last week has been one of those weeks that I just couldn't think so waited to post. My name is Bonnie and I have had Fibro for 15 years. My official diagnosis in FMS, CFIDS, Chronic Toxoplasmosis and complicated migraines but I have a lot of bizarre symptoms and my disease acts a lot like MS with good and bad days and symptoms taking turns as to which will be worse day to day or month to month.

Hi tigg,

Just a thought because I have a friend with MS. have you had an MRI to rule out MS? My friend tells me often that some of my symptoms mimic hers.

She has also told me to up my vitamin D levels to really high. I can't remember how high but she said her doc does research on MS and other similar diseases and found that high levels of vit D can slow or sometimes halt the progression of autoimmune diseases. I don't think fibro is autoimmune? or is it? I can't remember??

Take care, I hope everyone has a relatively pain free day.
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Old 08-24-2009, 12:57 AM   #71
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Brighteyes,

I'm afraid I had a major brain hiccup I meant to post the encouragement to go ahead with children to IvyandLace and posted your name instead! Thing is I remember changing the post name because I thought I got the post mixed up. Thanks for making light of it,

I have had two MRI's one 14 years ago when I started having migraine auras at separate times form my migraines. They still cant tell me why. I mean the definition of an aura is a warning sign yet I get them without the headaches and If I can quickly stop a migraine with Excedrin, Ice and rest I will often lose my speech or have sight difficulties to replace it?? I had the second MRI last year when my "brain hiccups" ,as I affectionately call all my memory and verbal slips, became more pervasive than my pain or fatigue symptoms. Since my pregnancies my constant symptoms were pain, fatigue and migraines with one usually being worse than the others for 6 month cycles or so then they would switch. My long list of others symptoms would pop up randomly and last for anywhere from a week to 6 months. 18 months ago we noticed the cognitive stuff was much worse and I figured it would ease in six months. The Dr thought since it was so long since my last MRI we should double check for MS but the MRI found nothing. I find it interesting that when I'm pregnant ALL of the cognitive stuff goes away. I can even read Novels again! By 6 months post its gone. I read somewhere that a pregnant mothers brain shrinks at about 4 months pregnancy and stays that way until about 6 months post. They think it has to do with hormones, water retention and biological base for bonding. Wish they would study that more!
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Old 08-24-2009, 01:13 AM   #72
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Hi Valerie!
On the weight front I have to agree with Cheryl I would move slowly on the surgery. I don't eat much at all and gain 15-20 lbs each time I have a Major crash. 100 lbs total from my original weight. Only after my kids could I lose weight about 75 lb.

Last winter I tried an over the counter sleep aid with Tylenol that I got for free figuring what would it hurt. I slept a little better and lost 1 lb every time I took it! Well I'm not going to stay on sleep aids and risk getting addicted or not hearing my kids at night so since I have had better luck with supplements I tried meletonin. Wouldn't you know I lost weight. Lost 35 lbs over 5 months by drinking more water and using meletonin! Only problem is I needed to stop taking it every 4 days or so because my legs hurt so bad. my guess is because I don't move as much when I sleep. The research I read also said not to take it for long periods. Since I have been off it I went to WDW and promtly crashed when home. Gained 18 lbs back although 7 of those I got from my trip to Disney from eating around the world! At least I EARNED those poundsLots of studies are now saying sleep disturbance is a contributing factor in weight gain. If that is a problem for you then you might want to see if finding a sleep solution helps you lose weight.

Well speaking of sleep I really should try to get to sleep again before dawn! I agree with you It feels good to finally have a place to talk about this stuff. Sending pain free vibes and Pixie dust to all!
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Old 08-24-2009, 06:57 AM   #73
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Hi Valerie!
On the weight front I have to agree with Cheryl I would move slowly on the surgery. I don't eat much at all and gain 15-20 lbs each time I have a Major crash. 100 lbs total from my original weight. Only after my kids could I lose weight about 75 lb.

Last winter I tried an over the counter sleep aid with Tylenol that I got for free figuring what would it hurt. I slept a little better and lost 1 lb every time I took it! Well I'm not going to stay on sleep aids and risk getting addicted or not hearing my kids at night so since I have had better luck with supplements I tried meletonin. Wouldn't you know I lost weight. Lost 35 lbs over 5 months by drinking more water and using meletonin! Only problem is I needed to stop taking it every 4 days or so because my legs hurt so bad. my guess is because I don't move as much when I sleep. The research I read also said not to take it for long periods. Since I have been off it I went to WDW and promtly crashed when home. Gained 18 lbs back although 7 of those I got from my trip to Disney from eating around the world! At least I EARNED those poundsLots of studies are now saying sleep disturbance is a contributing factor in weight gain. If that is a problem for you then you might want to see if finding a sleep solution helps you lose weight.

Well speaking of sleep I really should try to get to sleep again before dawn! I agree with you It feels good to finally have a place to talk about this stuff. Sending pain free vibes and Pixie dust to all!
Tiggspring, no problem on the mixup I know how it can be.

On this weight issue, I will have to agree 100% that lack of sleep will cause weight gain. In the summer of 2007, I weighed 160, then lost 35 lbs. I felt much better on my trip to Disney. Then I started college that fall, and by 2nd semester I was in constant pain, and sleeping for one hour at a time. 1st semester I spent many nights awake doing homework, by the winter I said who cares if the homework is done, I am sleeping, and I could not sleep for more than an hour. I would wake up at LEAST five times per night and be awake for about 1/2 hour to an hour each time. Needless to say I was exhausted. I think by March I had gained at least 40 lbs and weighed about 170. Then I quit smoking and gained another 10. Then I started my meds and gained about another 20 -30 lbs.

I did my Weight Watchers again this past spring and NOTHING. I can't even lose a pound! I am sleeping better - (I mean I am not waking up to the point of being alert) due to my amitryptyline. I am however still not sleeping properly. I am hardly ever in deep sleep. I had a sleep study done, and they found that in 5.5 hours I had 29 "arousals". Meaning whenever I came close to stage 4 and 5 sleep I came back out of it. Shheesh! No wonder I am exhausted all day long.

I went off my ami cause I didn't think it was really working and hoped that I could try to lose some weight, but OMG what a mistake! I was in the worst flare of my life, for that whole week, I cried myself to sleep every night. I NEVER want to go through that again.

So my question is - How have any of you managed to lose weight? I am so scared to go for a simple walk. The last time I did a 5 min walk each way, my calf muscles siezed up and I could not walk for 2 days!! I am really at a loss here and want to lose weight.

In my first year of college for my psych class I also did a paper on fibro, to prove if it is a real disorder or imagined! Ironically enough, my arugement was a study that was done in which one group was deprived of deep stage sleep and woke the next morning with fibro symptoms. In stage 4 and 5 sleep, the body released chemicals that help the muscles and body repair itself from the day and restores our body for the next day. I was going to try to prove my thesis by showing studies with meds like lyrica, but found the study on sleep deprivation.

Sorry for the long post, but I believe so much that this is an issue because the dr. at the sleep lab said, I do not have sleep apnea, but many people with fibro have difficulty sleeping but cannot come to a conclusive reason why myself and others have such poor quality sleep.

I hope my long post made sense.
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Old 08-24-2009, 09:41 AM   #74
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who would think you are researching Disney and you find people who suffer just like you do. I am 55 and have suffered for better that 25 years. I started with the headaches and paralaysis of the face joint pain and fatigue. next was diabetes now i have problem with the tendions in my feet retracting and the arches are falling. So I am here for support. we leave for Disney in 2 weeks and I a, so scared I will not be able to do this
Rent a ecv! I did that my last trip when I celebrated my 50th birthday. Was apprehensive about doing it, but not anymore. It increased my ability to enjoy the parks sooooo much, and my family didn't have to wait for me this time (I was the one waiting for them to catch up!).
Really, the memories of my previous trip consist of me telling my family to go do what they wanted, while I either waited on a bench in pain, or dragged my aching body back to the hotel. Not fun.
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Old 08-24-2009, 12:00 PM   #75
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Rent a ecv! I did that my last trip when I celebrated my 50th birthday. Was apprehensive about doing it, but not anymore. It increased my ability to enjoy the parks sooooo much, and my family didn't have to wait for me this time (I was the one waiting for them to catch up!).
Really, the memories of my previous trip consist of me telling my family to go do what they wanted, while I either waited on a bench in pain, or dragged my aching body back to the hotel. Not fun.
Absolutely agree with this post--especially for a multi-day trip. I can do one day--if I can take it easy the next--for example I went to Disneyland and walked on Saturday this past weekend, but didn't do anything on Sunday. But if I'm at DL or WDW for more than one day I rent an ECV. It just makes the trip so much more pleasant and I'm not wiped out all the time.
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