I Just Don't Understand

[bebe127]

I just don't understand how I can feel so crappy all the time, I mean every single day of my life! I've been in bed all day not feeling well, which unfortunately is not all to uncommon. I did get up to fold some laundry, put it away, and get the kitchen cleaned up before my hubs comes home. I just took my vitals and my bp was 122/83 and hr 97, so why do I feel so crappy??? One would think, I'd feel on top of the world.

I haven't been getting much sleep and I know that could be a factor. I am dealing with some emotional stress, and I know that that can do me in. I haven't been eating well lately as I am nauseaus most of the time and just want to hurl at the sight or smell of food.

I just want off this ride! Had a bit of a breakdown over the weekend and maybe I'm still in the midst of that. I just don't know anymore. I just don't want to feel this way

I hate being so miserable all the time.

Sorry for the rant

[misstraci]

bebe, I'm so sorry! I want off this ride too. How unfair to feel like this every single day of our lives. I've also been feeling very rough lately so I can completely understand. I don't have any good suggestions to help but I just wanted to say I'm sorry to hear about you not feeling well and I wish for you to improve.

[Aimes]

I'm so sorry you're feeling so terrible. I'm sure brighter days are on the horizon! I wish I had some wonderful advice for you, but I don't. Being sick day after day is torturous! Just know my thoughts are with you! Keep your chin up! :-)

[bebe127]

Thanks for the well wishes misstraci and Aimes

I just hate feeling like I live in a state of fear all the time as well as on the verge of an ER visit every other day. I never go to the ER, because really, what are they going to do? The first time and only time I went they almost killed me with medication (if it hadn't been for the nurse who halved it, I probably wouldn't be here). I don't regularly go to the dr. as I don't have one that knowledgeable in POTS, so I only go to him for refills and physicals. I just feel like I'm on a roller coaster that won't stop. And my vitals are fine, nearly perfect some might say. I just don't understand why I feel this way. Plus the guilt over my family can be so overwhelming. I feel as though they work so hard to hold me up, but who is holding them up?

I know I should eat better and exercise, but I feel so blah all of the time, I have no motivation for anything. I envy those on here that just fix it in their mind and work really hard to get better, to eat well, get enough sleep, exercise, etc. I want to be that strong person that faces adversity and says "I'm not going to let this beat me." I just don't have the energy right now.

I do have hope, it's just real dim right now...

Ok, I'm done whining for now, thanks again for listening/reading

[boymommy3]

bebe127....

I can totally relate! I don't have any great words of wisdom here as I mostly feel the same as you. Just know you aren't alone!

My bp and hr are similar to yours and I think to myself all the time, why in the world do I feel soooo weak and fatigued????

I also have been dealing with some pretty big life stressors and I know that makes all these stinking symptoms worse.

I always say, "if it isn't one thing it's ten!"

I am sorry you are having such hard time and I pray you get some relief quickly! Just know that others on here are thinking of you.

Blessings,

Heather

[lissy]

Sorry everyones feeling so terrible, as I have not been doing too well after a period of feeling better than usual:( Sometimes I just sit and wonder how many years can a person deal with the ups and downs and longer periods of downs, its exhausting in itself..I slept most of the day today just because I'm tired of all the symptoms I'd rather just sleep and that puts me behind on all my daily chores.A never ending ride is exactly what it is!!! I go to a counselor, I try to stay positive, but sometimes it just seems so hard. Sorry can't offer any advice just letting you know your not alone.

[Altruism]

Count me in...

I'm so sorry for you and I sooo know how you feel. But! There are always good days ahead of us, remember it! Try vitamins, try moving, try surviving, try another diet, try seeing a new doctor... but don't give up!

[spinner]

1. have you tried a med like klonopin, or a ssri like efexxor? You may have serotonin issues beyond POTS.

2. GUT/DIET. It sounds to me like you have absorbtion problems going on, mineral and vitamin deficiencies

from a gut/bacterial/leaky problem that is preventing absorption.

Have you had all bloodwork done to see where youre deficient? Have you had a vitamin b12 injection?
B12 is one the most common deficiencies and it can wreak havoc. Thiamin is another b vitamin to be checked

alongside potential celiac disease and food allergies like cassein.

It sounds like your body is not giving you the nutrients you need and you feel nauseous as a result. Im not giving advice other than GET TESTED and find out why you are nauseous. You could simply be allergic to something.

A holistic medical doctor who can check for parasites, leaky gut, and adrenal levels via salivary can really

help some people. Its not ALL just pots.

[bebe127]

Thank you all for your well wishes, I truly helps to know that I am not alone. I might not be feeling better physically, but please know that my heart is full of gratitude for each and every one of you I do hope and pray for all our sakes that we can get on the road to recovery sooner rather than later.

I do need to remember to count my blessings and focus on the things that I can do instead of all the things I can't, especially since there are so many out there that are so much worse off than me. I am thankful that I have a loving husband and children that try their best to be understanding and helpful. I am thankful that I am able to get out of bed every morning, even though I'd rather stay in my cave of covers all day:) I'm thankful that my brain works well enough to teach my gems Algebra II and Geometry each day. I am thankful that I can still force myself to take my kids to their co-op each Friday as well as teach poetry to my 21 5/6 graders. I'm thankful that I have such good kids. I am thankful that I can get the laundry done. There is so much more that I am thankful for and it would behoove me to focus on those things.

Thank you so much for your support, it means the world to me!

Spinner,

I have not tried Klonopin, but have tried Celexa (SSRI) that I didn't tolerate it well at all. As far as bloodwork to see what I'm decicient in, sadly I have no idea. As far as I know, my GP just orders the regular bloodwork for a physical and always says everything is normal. I will however go back to those results and look more closly at them. As far as absorbtion goes, I probably don't take in enough to be absorbed and that surely must be part of the problem. I'll probably end up getting scurvy on top of everything else! I should probably look into boost or some other type of liquid nutrition and or vitamins for supplementation. Thanks for the advice and I have gotten info from friends about a local MD that focuses on holistic medicine, I might try her in the near future.

Again, thanks so much to all of you for your caring words. I hope your days are bright and good.

[micheller]

Can I get off this ride too??? The ups and downs are horrible. I feel for you bebe! If I venture out in public (doesn't happen often) I always look at people and think it must be nice to feel 'normal'. To come and go as they please. Not have to plan every little daily task days in advance. I've had this for 4 years and I try to remember what it felt like before and I can't. I just remember being able to have a meal or snack and feel great! Now I have to watch what I eat, wait 4 hours after any intake before I can go anywhere or I get sick, and by then I'm so worn out I just want to sleep.

I've been to several GIs about my reflux/nausea and none had an answer. I've had 3 surgeries for reflux and no relief. My one GI is who diagnosed me with pots. He said my nausea is probably a nerve related problem. All of my reflux tests come back normal which is frustrating when I can feel it, taste it, smell it. What other answer is there besides nerves?

One thing I had tested was my iron. My levels were less than 1. I ended up getting an infusion and it was amazing! Literally like a coffee iv. I had energy for a week and then none. I had my levels retested and they were normal. It was nice while it lasted I guess. My vitamin D was low too but not alarmingly low. Can you ask your dr to do some tests?

[bebe127]

Thanks for your response Michelle. I am going to look at my past bloodwork and see what I can make of the results. I also might look into an MD that works with holistic medicine and have heard from friends that she starts at the very beginning and does bloodwork to check everything. As of right now I can only suspect that I am deficient in certain areas as I don't eat well at all, mostly because I'm not hungry or I'm nauseaus. I eat minimally in the am, 4oz. of yogurt and maybe a banana and a cup or two of coffee. This morning I had some oj as now I'm worried about the whole scurvy thing LOL JK!! For lunch, if I eat anything it is usually a half a sandwich or just cheese and crackers or just crackers. My husband (bless his soul) makes dinner, but I can only eat a little bit. Last night was cuban pork, mashed potatoes, mixed veggie casserole and baguette. All was great, but I can only eat about a heaping tablespoon of each. My 110 lb 5'9" teen daughter eats more than I do. Honestly, I think that I've gotten myself into this rut or habit of not eating well and I just need to start back with small steps. I am going to look into that holistic MD though, I'm at my wits end. Also, I'm sure that nerves plays a part in my situation as well.

Thanks again! Hope your day goes well and you are feeling bright

[looneymom]

I agree with all of you. My son wants off this rollar coaster too. As a parent, its really hard to see your child go through this. We saw his cardioloist back in November and all he could say was that between the ages of 16 and 21 he should outgrow it and then we'll see what symptoms he left with. But he also believes there is underlying condition causing the problem, so I research and he continues to talk to doctors at Vanderbelt after new test results come in. Feeling bad all the time is awful and wears you down. And missing sleep dosn't help. Try to keep your mind off your symptoms. If you feel like getting out, maybe just a 15 minute break in the sunshine or sitting by a window. Sunshine can help with depression and raise vitamin D levels too.