Chiari Malformation Community
Wednesday's Weight In~~~~~
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Wednesday's Weight In~~~~~

Hi All...lets get started...first who all wants to participate?

U do not need to tell us ur weight or how much u want to lose, but u may want to get the tracker up and running so u can track ur progress.

SO...post ur name and if u want to participate in a diet modification/exercise program for those with limitations.

    and hopefully we can support each other as we shed weight....and feel stronger with out pain : )
48 Comments Post a Comment
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3224597_tn?1347322388
I'll join you!
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620923_tn?1393294254

  I have an older thread and I can post some of the exercises we did last yr....I post the weekly threads during the school yr as that seems to be when we have more activity.

R u more concerned with diet or exercise?
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620923_tn?1393294254

  Hi all I made the yellow cake and pumpkin muffins....soooo very yummy only 2 left tho : (
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  Ok waiting to hear what this group is looking for diet and exercise wise so I can add.....
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Hi Selma!  I would like to share Chris Adams F.U.E.L website http://www.thefuelfitness.com/.
This is a man that is a fitness trainer and also raises monies and awareness for chiari!  He is true cheerleader of chiarians and is inspired by what we go thru daily to push him to do what he does better!  He has a facebook page as well.  
Being fed up with everyting I cant do  I have been walking on my treadmill daily, now only up to 45 min. and 2 miles.  I'm not sure it is doing anything physically yet, but I love how encouraging Chris has been.
I am by no means encouraging anyone to start a work-out routine, but was just so excited that there is a trainer out there that understands chiari. Thought maybe we all could check out his site and encourage him in supporting us!
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Thanks for posting about FUEL! From his page I linked to the Chiari Warriors' facebook page -- SO inspiring!
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620923_tn?1393294254

  This is wonderful that he supports Chiari and Chiari research.....what I am concerned about is his type of exercise he offers as he states he believes in resistance training, for those of us with EDS this is not a good way to go...and I appreciate ur sharing this info......

I do feel we can use the Dr on the site here to offer exercises for us, and we can also develop a diet for our individual situations....

  Don't get  me wrong there r some of us that may be able to participate in some of what he does, and some that would not ....so I just want to caution neone looking at the site to consider  if u r newly dx'd wait until u have ruled out all related issues and if u r recently decompressed, wait until u r healed.

JMHO
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1827123_tn?1383868876
I agree Selma! And I do believe he customizes the work outs for each person, as he also trains many non-chiarians.  By no means did I  mean that I thought everyone should jump on board and start a program.  I honestly dont know how Kalyn does what she does, but simply thought how great that he is out there educating others.  
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620923_tn?1393294254

  I deff agree with u. I just wanted to make sure that others also know that there r other issues we can have in addition to Chiari and I do not know if this person knows about all of them,

Although I am impressed in his generosity and willingness to help.

  
  My immediate plan is to try and find what people need in exercise and diet so we can get a new thread started.....

I have a Dr that helps with the exercises I post keeping in mind all limitations, including those recently post op , and those with EDS...etc...

  We all r at diff levels and I am just trying to find what the need is at this point for the group we have now.

Thanks again for sharing that info as I find it so inspiring that someone is so willing to help : )
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620923_tn?1393294254

  Ok...so what r u all looking for...or should I let this drop?
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   Hello?
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Avatar_f_tn
Personally, I would prefer book/movie recommendations.  I always keep a list, then frequently misplace it, lol.

Or, crafts?  I recently looked at a book on holiday decorations, & some were easy and/or unique.  Not the 3 story ginger bread house a la Martha Stewart!
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1827123_tn?1383868876
well, since I havent been on the treadmill once since the kids hit fall break...and I'm on my way to drink coffee and eat cupcakes...I think I'm up for anything new!  I loved Vivas recmd. for Rosemary and Thyme...I got about 4 episodes in before the kids took over!   Books would be great, tho I never have the money to buy them, and our small town library is awful!  I like movies, but same thing again. And I love to pretend to be Martha Stewart, (my hubby HATES her) but then again, it can get pricey too! HMMMMM.....not sure!  
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620923_tn?1393294254

  Well the movies and such would be a thing for Fridays thread.....I was hoping we could address how we should exercise and watch our weight .....

  BTW- I also can not stand MS I will not even spell her name......
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I will never write her name again, although I did like her idea for serving peas within a circle of a slice of baked squash.

Sorry, I cant be with you on the exercise (yet), & I don't think you want to be with me on the weight loss; not this way.
I wonder if w/Chiari, our metabolism out out of our control.

My DD went on the S. Beach diet, lost 20+ lb & never put it back on.  Of course she's young & healthy.
A friend's father, a dr, lost 70 lb--& put most of it back on.
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620923_tn?1393294254

  Well with the thyroid issue it is diff to lose weight for many of us, then add EDS and we have restrictions as to what we can do...no resistance with those elastic bands and that is what PT wants us to use....and I am searching for what I can do....

Not that I enjoy exercise, but know I have to move it or lose it.....
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I was gaining a lot of weight before the Chiari crash last yr.  it was weird, because nothing had changed (activity level or food quantity), & I could not lose it for anything.  I thinkmI gained weight just Looking at carbs.  I had to buy new clothes, just to wear around the house.  It's very frustrating to feel heavy, but I will never be judgmental about it again.
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1827123_tn?1383868876
Ive gained 20 pounds in 14 months...thanks to chiari and thyroid(tho, I'm not under dr care for the thyroid yet.). So far, the only thing I can do is walking on the treadmill. I have scaled back what I eat and how much I eat, but nothing seems to make a difference.  I wish I had something to contribute on the Wed. thread.  Years ago, because of IBS, I went to a no white sugars, flours. Lots of yogurt, almonds, turkey and salmon. I lost 30 pounds. But I gained some back, and now I am heavier than I was when I started. :/
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620923_tn?1393294254

  My weight fluxuated too with no change to diet or activity so I know how the thyroid can affect our weight regardless of what we eat.

U mentioned IBS...do u have that regulated? I know weight gain for me also goes hand in hand with a IBS flare....

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How much do you think is due to dysautonomia?
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1827123_tn?1383868876
Selma, I'm not sure it is IBS with the more I learn.  Started around 2000.  I would lose bowel control randomly. I never really got constipated, just always had diarrhea.  Dr. told me it was IBS and to change my diet. I ate yogurt by the truck loads as I was so embarrassed at being in my 20s, and messing my pants while out of the house.  About 5 years ago I started having problems with my bladder, dr gave me a little blue pill to help me not pee myself.   Now I eat and within seconds, I'm in the bathroom with diarrhea...not sure if its thyroid related or not?
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  So u had a loss of control...an incontinence type issue....I was always told IBS when I either just did not go and did not feel a needed, or I was running I never felt constipated either...

And a syrinx and tethered cord was ruled out?
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  I really am not sure....hmmmm something to do some research on....
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nothing has been ruled out. I moved with in weeks of finding out about cm. I finally have a NL name, but have not made the appt. yet.  I was also told I had gerd, and told to take prilosec daily....which I dont. I just try to avoid foods I know trigger it, constantly adjusting that....
I wouldnt be surprised if they find syrinx or tethered cord at this point. The research seems convincing enough for the symptoms I have.  EDS seems to bring it full circle for me to kind of that "a-ha" moment when everything makes sense. Had someone with EDS do their assessment of me and said to me, have you been checked...adding that to my list of to do.
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  I may have said this b4 but those with EDS r prone to have hiatal hernias...hence the reflux issues....we  also  tend to have umbilical cord hernias at birth....during my chiari journey my mom told me I did have the umbilical  hernia....but as far as the Drs knew back then it did not indicate nething to them....

  And I am told I was always a picky eater...well if after eating something it makes u feel sick, u r not going to want to eat it....lol...even a child knows that much.....

  Well I do hope they look at u for all of it as it is not good to have all the worry of what it my be...and the discomfort it brings.....

Do check out the  GERD forum here on MedHelp for more tips for  managing symptoms -http://www.medhelp.org/forums/GERD-Acid-Reflux/show/333?controller=forums&action=show&id=333&camp=msc
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  Neone looking for exercises or have a question regarding weight loss with limited mobility?
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  How about this week?
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1827123_tn?1383868876
hmmm...I think I just need a good kick in the backside!   I was doing so good on the treadmill, and then I had some things come up and havent been back on in weeks....not good for me, especially with the holiday season coming up...and then a wedding to attend the beginning of January...need motivation to get back on and work on those extra pounds that I already have... :/
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620923_tn?1393294254

  Well this is y I was trying to get a Wednesday thread  so we had to check in with someone and have someone to kick our butts when we back slide.,..lol...

Not sure if we can do it with the group we have....sigh....

I hear u....I just need motivation to move period...lol..I feel so tired lately....I just want and need the energy to do it...lol..
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  Bumping up just in case we have neone interested.....
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3060676_tn?1371241540
My goal is to gain weight- healthy weight. Since my last set back with the pseudo, I lost an unhealthy amount. I am up 2 pounds since then! I'm so happy to report! PT starts next Friday, so I'm hoping to add some muscle weight once I feel better!

I must add, I'm not sure how it is to try to lose weight, but I am having a struggle trying to gain it. I have a slew of gastro issues and eating is not a pleasant experience, so mentally, I don't want to. I would imagine trying to lose weight would feel just as frustrating! But I'm happy for my small victory! It only took me 6 months to get here! hahaha but I'm still happy!
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I am  so happy that u r getting up to a healthy weight and that is all we need to look to is what is health  for us.....

I also have gastro intestional issues....so I know what u mean....have u tried a probiotic? Magnesium? they r helping me  more then nething else I have ever tried.

Well I can lose weight, but I gain it right back a few days later....it is not a real loss....so I am happy u were  able to lose and I pray u can keep it off  and add to it : )
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620923_tn?1393294254

  Hi all how are u all doing this week?
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I am on probiotics and magnesium. I am actually trying to gain weight because I have gastroparesis and I keep losing it. These past 3 days, I lost the weight I had just gained, but I'm still hopeful that I can do it! I have been pulling out all the stops and doing what I know will benefit me the most. Hopefully, I will be back to my target in no time! :D
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620923_tn?1393294254

  Do u see a benefit to using the magnesium and probiotics?

It could be the start of them that u lost some weight...but, I am  sure in time u will gain some....

Now if I could lose .....lol...
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I need to lose a few pounds.....I think I mostly need to get back into an exercise routine.

But it seems everytime I think I am doing good enough to try some other medical issue pops up. I am just over 7 months post op PFD, and just ended up taking an unplanned week off work thanks to now my heart rate is getting too high.

I'll see the Cardio Dr next week, then maybe I can try to do the exercises you posted last year.

Dawn :)
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3060676_tn?1371241540
The probiotics definitely helped put my intestinal tract back in order! The magnesium was for headaches LOL. But multi purposeful! I started the probiotics much after the magnesium so I know it was the probiotics that helped. Gastric emptying study next Tuesday. Hopefully we can find a treatment after! :)
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620923_tn?1393294254

  Good luck with the Cardio Dr...have they tested u for POTS? It is related to Chiari and can affect ur heart rate.....???

  Let me know when u r ready for those other exercises and I will repost them.


@RheaAnn....I am so glad that u saw benefits from the probiotics....I know it is something we all may need,.....what is the  dosage of magnesium u r taking...? I was on one and my Dr upped the dosage.....
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Not yet. I'll have to remember to ask the Cardio Dr on Monday.

They did check my thyroid levels but everything came back normal there too. My primary Dr is thinking of putting me on Beta Blockers but wants a full cardiac work up done first.

Dawn :)
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620923_tn?1393294254

  Did they do autoimmune thyroid testing or just TSH?

  Keep us posted with the Cardio Dr...I went too and everything was fine,..Chiari can affect so much,....
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3060676_tn?1371241540
500mg twice a day
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  Wow that is double what I take,....lol...
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620923_tn?1393294254

  Hi all how are we doing this week....my weight stays the same,...fluxs up and down but with in 5lbs each direction...ugh....
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620923_tn?1393294254

  Hi all...we are in the middle of all the tasty treats with the holidays...Christmas is next, and then New Years,....I know other Holidays such as  Hanukkah , Kwanzaa, may also be celebrated by members  and I feel we all overindulge on special treats we have just during this time of year....so since many of us are more sedentary we need to be mindful of our diet and our activities.....
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Oh, I need to participate in this! I've been super depressed about how out of control my weight has gotten lately. Last winter, I lost 20 lbs because I noticed my weight had gotten out of hand around this time as well. Now I'm almost back to where I started. I keep telling myself I'm going to stick to my diet hardcore "tomorrow." I don't know where my drive went, but I need to find it again. I hate going in public and feeling like people are looking at me thinking how disgusting I look. So diet, now!
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620923_tn?1393294254

  Good for u....we do post recipes on Thursday...some r ok for those watching their weight....some are not,,,so u have to watch...and if u have ne recipes u can add them on a Thursday.

We did have a list of exercises on the older Wednesday thread, but there was a loss of interest....so I am still trying to see who would like the info.
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620923_tn?1393294254

  Hi all how are we doing weight wise...I actually lost 5 lbs...I usually lose it then find it ...so far it has stayed off....crossing my fingers I do not find it and then some with all the treats over the holidays.
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I know I don't post much on this forum, but I saw this thread and it peaked my interest.
I'm a HUGE advocate for Weight Watchers. I joined WW in April of 2009 and I've lost a total of 77.4 so far (I'm only 3 pounds from my goal weight now). If anyone has questions about the program or have even been curious about joining let me know! I swear by it.
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