Weight Loss

[shayden]

Hi All,

I haven't posted in quite some time. I have been very ill with POTS for the past 2 years and for the past year, it has really been getting the best of me. At this point, I am more ticked off then anything. I really wish Doctor's would just tell me when they have no idea what to do with me! I think some feel that I am just a mental case and then the others just don't have a clue how negatively this is effecting my life. Ok...sorry....just had to get that out. lol

On to the weight loss. Like I said, I have been suffering from pretty severe symptoms for the past 2 years and in that time period, I have lost a total of 78 pounds. Now grant it....I had it to lose but this is starting to really worry me. I have gone from a size 22 to a size 10. My Doctor's act like it is no big deal and that it is actually a good thing and that I should feel "blessed that I didn't have to work for it." So I started reading all of your posts and the one that caught my attention was "but you look so good". God.....I hear that all the time....It's driving me crazy. I am asked daily, how I am losing all the weight, I finally just started telling everyone....you try fainting every single day.

Do any of you know why weight loss coinsides with POTS? Anything I can do to slow it down? Is it all going to come right back when or if I start to feel better?

Thanks for always being there to help!

Susan

[janineerrn]

Hi All,

I haven't posted in quite some time.  I have been very ill with POTS for the past 2 years and for the past year, it has really been getting the best of me.  At this point, I am more ticked off then anything.  I really wish Doctor's would just tell me when they have no idea what to do with me!  I think some feel that I am just a mental case and then the others just don't have a clue how negatively this is effecting my life.  Ok...sorry....just had to get that out.  lol

On to the weight loss.  Like I said, I have been suffering from pretty severe symptoms for the past 2 years and in that time period, I have lost a total of 78 pounds.  Now grant it....I had it to lose but this is starting to really worry me.  I have gone from a size 22 to a size 10.  My Doctor's act like it is no big deal and that it is actually a good thing and that I should feel "blessed that I didn't have to work for it."  So I started reading all of your posts and the one that caught my attention was "but you look so good".  God.....I hear that all the time....It's driving me crazy.  I am asked daily, how I am losing all the weight, I finally just started telling everyone....you try fainting every single day.

Do any of you know why weight loss coinsides with POTS?  Anything I can do to slow it down?  Is it all going to come right back when or if I start to feel better?

Thanks for always being there to help!

Susan

<{POST_SNAPBACK}>

[lalalisa]

Hi! I'm so sorry that you are doing so poorly! And that your Dr's don't seem to be very understanding / concerned.

I tend to think the weight loss is for different reasons for each one of us. For me I lost a lot of muscle weight because I had to quit exercising. Then once I quit exercising my appetite diminished like crazy because I just wasn't burning any calories. (I went from running 3-5 miles/day to MAYBE walking a block or 2/day)

I also have weeks of nausea where food just doesn't sound good and I just don't eat much at all.

Have you tried to analyze your eating patterns and changes to your lifestyle over the past 2 years? Are you eating different foods, portions, etc?

I know this doesn't seem profound but it seems to be the reason I've lost weight. I started out at 120 and now I'm around 105-110 depending on how nauseas I am.

Hope this helps,

Lisa

[Kitsakatsa]

My intial 35 pd loss was due to deconditioning and the inability to eat anything but rice pudding.

[Gena]

I lost weight and can't seem to gain any due to adrenaline, tachy and lack of sleep issues. When I have bouts of being in the POTS hole, I'm up for many hours at night (like tonight), sometimes with major adrenaline rushes, and I inevitably burn calories and lose weight. I make a concerted effort to eat a lot of calories and high fat, but it doesn't really stick anywhere!

Can you tell if you're losing muscle mass in addition to fat? Are you still exercising if possible? Even though I'm thin, I still exercise, because it's so important not to get deconditioned. I just don't over do it though.

The weightloss is frustrating, but I know that some people with POT/dys. also have the opposite problem of trying to keep weight off. So I guess either way we're screwed!

Hopefully your body will stabilize soon, which is usually what happens. Hang in there!

Gena

[Jenn202]

When I forst started becomming ill I lost a trememdous amount of weight. I was 5'5 and down to 90 lbs, my bones showed through but I was eating everything in site...I was so hungry!

As I have been treating the cause of my ANS ( Lyme) and feeling better I was able to excersise again and put on muscle mass which has brought me up to 106lbs.... I feel I look much better... Now I wax and wane from never feeling full to feeling too full and not being able to eat,,,,

Does anyone experience this?

[calypso]

Susan,

I have lost quite a bit of weight and have tried to have my doctors investigate this, but they come up with nothing. My adrenaline levels are totally normal, my protein levels in my blood are normal. Those two things being abnormal can cause weight loss.

I eat 2000-plus calories a day right now and still can't gain a pound, but I am finally able to maintain my weight. Have you reached a plateau in terms of weight loss, at the very least?

I think you had a baby in the last couple years. Did you breastfeed for a long time? That seemed to exacerbate my weight loss.

I have lost a lot of muscle along with my fat. I am going to physical therapy starting in two weeks and hope to really work on regaining some of it, but I realize until I can put on weight, this may not happen. Wish I had more ideas for you. Try high-protein foods or shakes (low-carb version of Carnation Instant Breakfast is what my nutritionist suggested).

Good luck, and feel free to e-mail.

Amy

[shayden]

Thank you all so much for your posts. Amy...you are correct....I had my first and only child 2 years ago. I did try to breastfeed but I simply could not produce milk no matter what we tried. Even the lactation consultant was at her whits end. lol

Unfortunely, I have not hit a plateau yet. I am hoping this will happen very soon. I, like most other POTS patients, go through spurts where I will eat everything in sight and then go for weeks without feeling the slightest bit hungry. I have made a consious effort to eat now even if I am not hungry. I currently go to the Doctor's about every other week and each visit I am hopeful that I either put on a couple pounds or not lost any at all. This never happens. It always shows about a 3 pound weight loss. In the beginning I was losing about 15 pounds per month so it has slowed down a bit.

I have been confined to my house now since the beginning of all this being in bed most days, so I am certain that I have lost a tremendous amount of muscle. I think I am going to discuss with my Doctor the idea of physical therapy. Sounds like a good idea for the days I can manage to stand up. Unfortunely, I am still fainting approx. 2 times per day so this really draines everything out of me.

Thanks for all of your great advice and I am definetly going to try your suggestions.

Please take care and any other suggestions would be greatly appreciated!

Warm Regards,

Susan

[MomtoGiuliana]

Susan

I am so sorry that you continue to have such a very hard time. I thought that perhaps since we hadn't heard from you for so long that you were doing pretty well. I remember the photo of you with your baby--which is still posted on DINET photos.

As far as weight loss--I don't have anything to add, except that weight management does seem to be an issue for most of us for a variety of reasons that have to do with possibly the effect of this condition on our metabolism as well as on our activity levels. My first bout with POTS in 1999/2000 (not very severe as far as symptoms) did result in my weight inexplicably going down to 118 pounds --and I am 5'10". This time, (POTS came back w/a vengeance during pregnancy and post partum), I have been able to easily lose the pregnancy weight, but my weight is now stabilized.

I think the suggestions given so far to you are great. Physical therapy/exercise is important for recovery--I hope that will help you.

What medications are you on and what other things do you do to manage your symptoms on a daily basis?

I hope you have adequate support for care of your child and your other needs.

Take care and stay in touch

Katherine

[morgan617]

I'm sorry you are having such a hard time. My 50 pound weight loss was due to esophageal crud. I have to get it dilated every three months and the motility is terrible. I feel really sick when I eat, so I just don't like to eat, or when I do I spend the whole time choking on everything. My doctors have said I am not to lose anymore. Okay, I didn't plan on losing any in tne first place.... And I get that "oh you look so good" all the dang time. I'm so sick of hearing it, I could rip my hair out.....hey, if I did that maybe people would stop saying it.... morgan

[Kite#7]

Hi Susan,

I would ask maybe you go through Lisa's Thread about Creatine and see what you think as this might help to allieviate your weight loss , or at least stem the tide and give you a steady weight range / improve energy. I would also think trying to eat bit more complex carbs might help , like cearals , oatmeal ( add honey its a great equalizer , a natural SUPER food). I eat this cearal called Jordan's Museli and its other iterations , sometimes with yogurt instead of milk, when I need to steady my weight. Smoothies are also great way to help and say nutritious. add a bit of Protein powder for weight gain ( not to much though as you want to add slowlly and keep your metabolic rate fairly tepid and digestion could be issue with too much protein).

Susan, I have also ranted on about exercise on some previous posts that i think would be relevant to this situation. I would stay away from Cardio and do Core/ Resitance very light , in a chair -- on the floor and of course with a Swiss stability ball to start. Even just a few minutes / day will help to mitigate your issues. Certainly won't stop them But , may help make then more livable , heck , even enjoyable.

from there , Small meals , live foods , fluid intake (not just water ---tea ,even coffee count) Good supplementation ie omega fats 3,6,9 ( evening prim rose - flax , borage oil etc.) a good multi and you should start to see some weight.

cheers Kite 7

[Jenn202]

Hi Shayden - I just wanted to add that I drink a daily protien drink .... Its made by Jay Robb.. I get it at WHole Foods Market or Wild Oats.. you can also order it online.. it is a really yummy drink you can get chocolate or vanilla, and you can buy it in either egg white protien or soy protein, whichever you prefer. It has 24 grams of protien perserving and all the animo acids...

I drink it every morning with some rice milk and ice in a blender.. its like having a milk shake.. It also gives me energy.

[calypso]

Morgan,

You crack me up with that ripping your hair out thing!

Amy