Lauren78

Okay....I asked a question last week about bloating, food sensitivies, and the amount of food you eat. A large percentage answered 4-6 very small meals a day. I am having a hard time finding nutritious and healthy food that will fill me up, be small small amounts, but still give me my 1500 calories a day. So I am looking for help....opinions, advice....what do you eat?

I know fatigue is something all of us potsies deal with. But sometimes I am just SO tired, it's ridiculous. And it's not like I have even done anything! (Although I do notice it's worse when it's that time of the month...you too?) For example...I went to bed at 9:00 last night, woke up at 7:30 this morning. And still laid down to take a nap at 10:00!! I truly feel like my cats...just sleeping the day away. Does anyone else have days of extreme fatigue? Is there a reason why we feel this way?

Great topic Jen! I find it depends on the day...some days are good, some are bad. I can generally work out pretty well though. I go to the gym 5 days a week...but workout at my own pace. For cardio I just walk at a 3.5mph on the treadmill, that gets me up between 145-170 (so sometimes I drop down to 3.2 to get HR back down). I can handle about 30 minutes then I am done. Weights...I do all normal weights...pretty heavy, actually for a girl. But instead of the 30 second break between I rest about 1.5-2 minutes between sets. It takes longer to work out then a "normal" person...but at least I can still work out! Although I don't always get the energy boost afterwards, with the POTS I find it often makes my tired. But I still feel better overall. I love to exercise as much as I can within my limitations! My advice would be to start slow, see what you can do, rest between exercises when you need to, and above all just listen to your body. Even a little bit of exercise is better than none at all. Good luck!

This is a good question BellaLuna, and I enjoy reading everyone's results. I wondered about the BP thing too...my most obvious seemed to be my heart rate. My results were: At rest: 72 bpm and 110/81 BP 1 min in: 145 bpm and 104/78 BP 3 min in: 257 bpm and 105/80 BP 5 min in: 175 bpm and 102/67 BP For the next 5 minutes my heart rate went between 120 and 198, with one tachy strip. BP was between 84/51 to 118/64. For some reason they felt the need to give my nitro...since I didn't faint. Is this normal?? Because, reading my above info I think that would have told them the outcome right there!! Anyway, after the nitro my strip was: 164 BPM and 107/55 BP 3 mins later it was 188 with 82/53 BP and I passed out Upon waking my bpm was 86 and BP was 102/58 These seem pretty full on POTS to me. But I was discharged with a "partial dyautonomia" diagnosis. What do you all think??

Thanks guys...I will try the suggestions. I don't remember having malt-o-meal before, but will look for it in the store. Mmmm....homemade pudding! I like the shake idea too. Thanks again...it will be nice to get some soft food that I can eat so I don't waste away! LOL.

Hi all! I just got braces yesterday and my teeth are SO sore!! I can't eat anything really....even oatmeal was too hard for me. Yogurt is okay, but not with any fruit chunks in it. I bought some protein RTD shakes, and my husband got me some chunkless soups today (tomato, cream of broccoli, etc). I was wondering if any of you have any ideas for some fairly healthy, yet quite mushy and soft food. I can't live on RTD's, but I am too sore to chew anything at all. Any suggestions would be wonderful! =) BTW...I don't know if POTs make having the braces worse or not, but goodness it's not fun!

Hi Flop...I know this is a day late...but HAPPY BIRTHDAY! I hope you had a fantastic day!!!

Hi! For me it's any place that is overstimulating, or too hot. Wal-Mart is impossible. Libraries. Too long in a mall. A lot of the places already mentioned. =) It seems that the hot and/or "business" of a place really gets me.

Thank you everyone for your replies. It does seem as though it's mainly a woman thing, but that there may be some POTs connection. I will give the compression hose a try, as well as more hydration. For the cellulite...I read about a product called Oligo DX that is supposed to be fantastic...I think I will give it a try. Any one else try this product before? Thanks for the congrats everyone.

Yes, vacuuming bothers me too. As does any vigorous cleaning...like the kitchen. Laundry gets me too, the bending, sorting, putting into the W/D. Lucky for me my wonderful husband now does the chores. We used to split them 50/50, but now it's more like 90/10. I do what I can, he gladly does the rest.

Hi everyone! Sorry...I have been incommunicado for about a month or more. I had wedding plans along with normal crazy life. Then family and friends in town. We got married...then went on our honeymoon. We are back now and life is settling back down to normal. So, I have a question about cellulite and spider veins. It seems that since I have had POTS I have noticed a lot of spider veins on my upper and lower legs. Is this because of the vasoconstriction/dilation thing? Is this normal for POTsies? Is there anything I can do about it?! I notice the same with cellulite on the thighs and butt too...seems more prominent than before. I know these are also just women things....but I am not even 30, and not at all overweight...so I wondered why all this is happening now. I wondered if it was connected to the POTs or if I am just suffering from women problems now! LOL. Thanks for listening and giving me your opinions! I've missed you all, so it's good to be back!

Awesome...got it! Thanks Rachel!!!!

Happy Belated Birthday! I hope you had a great day and will have a great weekend!

I have tried, but it always tell me to contact a moderator. Am I doing something wrong? Thanks!

Gosh...thank you so much everyone for your response. It is SO good to know this is normal and that I am not alone in this. Although it's a shame any of us have to deal with it huh?! Except you Ernie. Sounds like I have both the dysautonomia and drug side effects working against me. Nina, I laughed out loud when you said it feels like you've been neutered! God, I know that feeling. It is a miracle any of us have a sex life!! Thanks again for the encouragement and support...nice to know I am not alone. Now if only there was some miracle pill we could all take to get that "O" so great feeling back!

Hey guys. I am feeling frustrated and wanted to vent and see if this is a common thing. It just seems as though I have no sex drive...I mean, none...zip, zero, zilch. It is so frustrating for me, because I used to thoroughly enjoy sex with my fiance'...who is the sweetest man in the world with a heart of gold, and lucky me a body to make one drool too! I am turned on mentally/emotionally...but physically I get nothing. And it's not just with him (not I DO NOT mean other people)...I mean with myself...you know, taking matter into my own, uh, hands. No response all the way around. I am only 29 and am discouraged. Is this due to POTS? Is this a possible side effect of the sertraline? It hasn't dampened our sex life, because we still have a very active one with lots of love between us...except I don't, um, you know. And sometimes it takes me a looooong time to get into it. What gives? Does anyone else have this problem with their husbands, wifes, or life partners? Any suggestions on what you have done to help this, if you have? Just feeling discouraged and sad...I would like to be able to enjoy sex again. Anyone else deal with this?

I answered "No, I choose not to concieve." However, I must make a note that this is do to personal choice and that I have never wanted children, and nothing to do with my POTS. Although now with the POTS it further reinforces that decision.

Hi everyone! Like most people on hear I live on gatorade and vitamin water. The one thing I hate about those products is the amount of sugar and calories in a serving. Especially since I will have 2-3 servings a day! So...I went to my local health food store, the vitamin shoppe, and found a great product there. This is carried in national chains like Hi-Health, GNC, The Vitamin Shoppe, etc...so easy to find no matter where you are. It is chalk full of vitamins, esp. B vitamins, electrolytes, and minerals. More than gatorade or vitamin water and it only has 2.4g of sugar per serving...instead of the 14-24g in gatorade or vitamin water. Also, depending on the flavor it's only 10-14 calories...opposed to the 70-90 calories. It's powder form, so you just add it to water and viola! It's not as sweet as gatorade...due to lack of sugar. But it's not bad and better for health. So...if you are looking for an alternative like I was, I say give it a go! It comes in 4 flavors. Just thought I would share with everyone, as I am SO happy to have found this!! http://www.traceminerals.com/products/elstpwrpak.html

Thanks guys for all your responses. I guess I should make a doctor visit just to be on the safe side. Funny that you mention FMS Nina. My mom has FMS...and they think their may be some familial or hereditary attributes to that. Glad I am not alone, but not glad all of you have joint pain too. I hope it's nothing...didn't want to do anything about it before since it just happens at night mainly I blew it off as a sleeping thing. But I think I should make an appt. Does anyone else ever get tired of seeing the doctor so much? The nurse there knows my voice on the phone without me introducing myself!

I have noticed more and more lately over the past few months that I have a lot of joint pain, especially when I wake up. I toss and turn A LOT in the middle of the night, and it's because I either have to pee , or because my limbs have fallen asleep, or because my joints are sore. I wake up and my elbow(s) hurt to extend fully. Sometimes my shoulder hurts if I lift my arm up. Fingers and knees are okay. When awake though I notice my knees will hurt if I sit cross-legged too long or just sit too long in general...when I go to stand they are really sore. I wonder if this is a POTS symptom, or something else? I wonder if maybe I just sleep on my limbs or remain in a certain position too long which causes the problems? I wonder a lot of things LOL. Bottom line...does anyone else experience this?!

I kind of opened a can of worms on this one huh guys? I can understand where you are coming from Sophia. It seems that people I have met in my life are either very pro-tattoo or extremely against it...and naturally everyone is entitled to their own opinions. I am a both person in a sense. I am not against them, obviously. But like a lot of things I think they can be taken to the extreme, and I also think some look very trashy. So I guess I am for a nice, small, sensible and personal tattoo in an appropriate place on the body that has meaning for you, but can also be easily covered up for work, or whatever. But yes, they are FOREVER...so once you decide to get one you better make sure you think long and hard and that you like it. I have been thinking about mine for 2 years now. And hey, it will be on my back, so if I am 80 and don't like it I won't be able to see it well anyway! I have heard lately about people having reactions to dyes. I am going to do more research on that, now that you brought that back to my attention. Of course I will do thorough research on the tattoo establishment and artist as well.

Hi Mary, Welcome!! No, that's not weird...I was completely relieved when I finally had a diagnosis!! You will find a wealth of information here and very friendly people. Sorry you have NCS, but glad you found a place to related to others who have dysautonomia. I don't have the problem with the planes too much, but like Corina elevators are terrible. I get this weird heady feeling and some vertigo.

Thank you everyone for your input and replies. I know tattoo are a cause for concern with infection, mainly Hepatitis. I would not go to a tattoo artist who didn't have an autoclave in their office and perform appropriate infection control procedures. I am in the medical field, so they couldn't pull one over on me! I appreciate you pointing that out to Angela, because a lot of people probably don't know what to look for in infection control so I appreciate you mentioning it! And you are right, a good tat artist should be very concerned with the sterility of their needles, etc. Outside of that, I have also had the Hep A and B vaccinations (due to medical field), so a little added protection there. I am glad to hear you got one without any problems Angela, and that it was significant meaning to you also. I think that is very important...since it will be there forever. The one I am getting is in the same location as yours, and will be a calla lily which had very special meaning to me. Good to know the ortho issues are just the standard issues. I know to expect the traditional pain with tightening, etc. Fun fun. LOL. Melissa, your post made me laugh. And I can't see my alarm clock either! LOL. I love the idea of lasik, I do not, however, love the idea of someone coming toward my eye with a laser and cutting pieces of my cornea. Totally freaks me out. So, until they develop an even better way I guess I will stick with the contacts during the day, and "blindness" when I am sleeping. Thanks again everyone. I feel a lot more reassured and plan on going through with both in the near future. Will let you know how it fares for me!

Huh, that's interesting Sue. Did he give a reason why he is anti-tattoo? Is it a POTS thing, or a personal thing?

Hi everyone. I am curious as to the relation to pain, dental work, and other factors when it comes to POTS or any other dysautonomia. I notice sometimes pain will increase my heart rate, and am hoping this won't be an issue with dental work or tattoos. The reason I ask is because I am about to get braces put on (as an adult, I am nearly 30) and wonder what effect, if any, will be experienced in addition to the normal ortho pain felt by "normal" people. I am also planning on getting a small tattoo on my lower back and wonder about that as well. Any one with dysautonomia, and POTS in particular, if you have had ortho treatment or a tattoo can you please tell me your experience? I am really worried about this. Of course the tattoo would be elected. But the ortho is needed. Please help. Thanks!