JaneEyre9

I'm so sorry to hear what you are going through. I can't imagine what it'd be like to have your life line pulled from you like that. I'm sure that as you continue to feel worse the thought of fighting is that much more overwhelming. Is there a way you can share this burden with a family member or even an attorney (or law student?) who could speed up the process? I know my dad has fought some battles for me when i felt too sick to even think of fighting. (He can be more intimidating and attention getting than me too.) You deserve this drug. Kristen

Hey thanks for the great feedback, and letting me know i'm not alone...! Suzanne-- thanks for the empathy! I still cannot tell what exactly causes it...if it's the physical stress of sitting up, or the mental concentration of keeping up with conversation or a combination of other factors i'm not thinking about. do you notice a pattern or trend with your symptoms? I haven't looked into CFIDS very much, but will do some research on it. lthomas-- that's a really good insight. a friend of mine does research in that area specifically and mentioned B12 as something i might want to think about. At the time it was just a general suggestion about my multiple chemical sensitivity but if it would specifically help this symptom, i think it would be worth asking my doctor. nadine-- i feel this way in the morning too! No matter how much sleep i get, i always wake up feeling like i can't move because of muscle aches. I usually "warm up" and feel better after a little while, but like i said, if i try to do any activity outside of laying around the house, i get the muscle aches more severely as a consequence over the next several days.

Just wanted to add a "me too" about the bruising. I never understood why but i bruise very easily and sometimes can't explain where they come from. If i actually do bump into something, look out because i get the nastiest looking bruises. I even bruised my arms trying to play volleyball several years ago (before POTS). My basic bloodwork is normal.

I have noticed that the few times i try to go out of the house i have major muscle aches (along with terrible fatigue) for at least 2 days afterwards. I also get a sore throat. Do any of you feel this way too? Could this be a sign of an underlying disorder or is it "just POTS"? I expect the dizziness and fatigue and tachy, but the muscle aches don't seem right. Thanks for any insight... i thought at first that it was just me being tense and stressed trying to go into work, but recently it happened at an enjoyable family get together as well. I didn't do any activity more than sitting or lying down with my feet up the whole time, yet i feel like i ran a marathon! Kristen

Thanks for the info! What have you tried before? How long has this been working well? Any side effects? I've been trying to manage my abdominal cramps and diarrhea for years with fiber. It works fairly well, but i always have attacks every month or so.

I have definitely felt "woozy" when getting out of a car or an elevator for that matter. I don't know how to fix it except maybe keeping your legs up on the dashboard and then pumping them lightly (like doing some stretches) before trying to stand up. I also try to carry a water bottle with me when i ride in the car. Hope this helps! Kristen

Hey Kim, i can sure relate about the antibiotic giving you stomach problems and your period at the same time! I am also lactose intolerant, and i can't handle the yogurt either. The acidophilis pills worked for me but they took a couple weeks to kick in. I hope you start to feel better with those. As for the tofutti, i'm right there with you! It's great for a down day, or even a good day. Hope things start to feel a little better. Enjoy your trip! Kristen

Hi anjuu, I have problems with moodiness especially before my period. The symptoms seem to have worsened since I got sick. I have noticed some moodiness at other times too. Who wouldn't be a little moody when debilitating symptoms come and go without warning!? If you think this is more than just adjusting to illness and hormones, you might want to get a second opinion-- especially if this is affecting your social network/everyday life. Another thing that really helps me is regular low-intensity exercise. I try to do 15-30 minutes of walking as I'm able, and that tends to smooth out the peaks and valleys, emotionally speaking. Not a cure, it but makes it more bearable. I also pray a lot for help!! Welcome to the forum! Kristen PS- listening to uplifting music also helps when i'm moody

I'd most likely take a woman's medium. And of course, depending on the design, maybe two more...a man's XL and another woman's medium.

I definitely feel sick after large meals, however, small meals tend to energize me. My symptoms are the worst when i haven't eaten.

Hey Amby, I've haven't been posting much lately either. Just want to say i hear you about the sleep issues. That is one of my major problems. I really hate it when people tell me to get on a schedule. Like you said, if we were normal, that's exactly what we'd do! I just wish i could put certain people in my body some days so they could experience what i feel. I also feel sick when i wake up. Frustrated right along with you... Kristen

Mornings are not easy for people with dysautonomia. I think part of it is related to dehydration we experience by not taking in fluids overnight. When i have some salty broth or snacks in the late evening, my mornings are a little easier to handle than if I had gone to bed on an empty stomach. Also, I know that my pulse is always high when i wake up because my beta blocker has long worn off. It takes a while for my food and meds to kick in once I'm awake. I too feel my best around 10pm-12am. It's so frustrating to feel well right when it's time to turn out the lights!

Glad your dad made it out of surgery ok! Also glad your brother made it to the hospital...through a unique route...

Happy Birthday, Jan! What a wonderful moment to treasure.

Jan, I'm so sorry to hear you're facing such discouraging news. Please know that I continue to pray for you and Jeff. Kristen

Awww, thanks everyone!! Your post warmed my heart! I had a great day...lots of rest, a good meal, and wonderful family...and CAKE. My friends called me too, so all in all I was a pretty happy camper! It just feels good to be remembered, ya know? I hope and believe that this year will bring good health as well. Thanks for starting the post, nadine, and thanks to all who posted! :-D You are all so supportive, and I don't know what I'd do without this place. Kristen ;-) you were right corina

Hey Melissa, I'll be thinking about you and your family. I hope everything goes according to plan and that your dad will be up and walking around as speedily as he estimates ;-) Hang in there...i know it's hard when you feel stuck at home and not able to physically DO anything, but by praying we are all doing something mighty. You know my prayers are with you all...you, mom, dad, and bro. Kristen

Jan, I will continue to pray for you and Jeff. I'm so glad to hear the cryotherapy went well. I'll pray the delivery of the radiation spheres is just as successful on Wednesday. I am really glad that you posted the update. I have been thinking about you. Kristen

Hope you had a very happy birthday!

Jacquie, It's tough for healthy, young people to understand chronic illness. I agree with dionna that it's easier for people to get that something's wrong if they can *see* you sick on a continual basis, but with most friends, they aren't around enough to get that 'advantage.' I have found that i try to put on my best "healthy behavior" and appearance to my friends and that ends up giving them the wrong impression. It's a lot like willows said...It's tough to plan your whole day around trying to do one event that most people just take for granted (energy-wise). I think the best advice i have is just to accept people right where they are. If you really value their friendship, hang on to them and accept their flaws. If they are draining you and giving nothing back to you, then maybe try to distance yourself. All you can do is explain your situation and hope for the best. I truly empathize. POTS is a great sieve for friendships. The good ones stay in and the uncommitted drain away. Kristen

Hi Janet, I don't think your symptoms are all that out of the ordinary. I have had episodes of syncope and near syncope while sitting and while lying down. I especially have difficulty going to restaurants because sitting for a full meal is very difficult (not to mention i'm usually empty/hungry and therefore dizzy to begin with!). I empathize. It's often hard to explain to people that sitting can be a problem just as much as standing! I think that BP has a lot to do with it. When I was in cardiac rehab last fall, my biggest problem was not walking, but sitting down after I walked. The body reacts to exercise by raising the BP during exertion and then when you rest, your BP drops after exercise. I think the best thing the techs did to help me compensate was to keep my HR from going too high while walking, and then immediately having me lie down when I finished. Also doing some slow leg lifts while lying down helped my BP. Hope this helps! Kristen

Good luck on your surgery! I hope it makes you feel a lot better.

I too have had pain in the upper right side of my abdomen. I had an X-ray, ultrasound, CT, HIDA w/cck, and endoscopy. All came back normal. I had a lot of nausea and lost a lot of weight when the pain was at its worst. It would also radiate to my back. It was the worst when someone would push on it. I was told that it might be the nerves in the cartilage around my lower ribs getting inflamed. I have no idea if that's the case, but it's strange that several of you have the same symptom....very interesting! let us know how the ultrasound goes, Jacquie!

Hey Claire, It's tough to get a lot of salt. Your doctor typically sets the amount that you should have each day. I was confused at first because my doctor gave me my number in "grams of salt" but this is different than "sodium." Salt is 39% sodium, so for instance, if you are told to eat 8-10 grams of salt per day, you are looking at 3,120mg-3,900mg of sodium. If you are a label reader (which i bet you are being gluten intolerant ) then you will notice that a normal person's sodium intake should be about 2,400mg. So we have to go a little above and beyond. For a gluten free diet, chicken broth is a great way to increase sodium. It's good just to drink hot, but you can even make your own soups if you like to cook. Fritos and corn tortilla chips are also great for snacking. Specialty stores also might sell gluten free pretzels. Luncheon meats are a great source of sodium. I prefer turkey but ham is even better. Pickles and olives were already mentioned. Stir fry is a great high salt food because of the soy sauce. I like to add salt to things like potatoes, rice, meat, vegetables, eggs, and toast. I know you can't have toast, but I also eat my grandma's gluten free bagels toasted with salt. My favorite meal is salty eggs, salty toast and bacon. Hope that these suggestions help!

Welcome, Janet! I know what you mean about feeling lonely at the beginning! This forum is a great place to get support. Here is some sunshine for you.... That's for both of us because I don't get out much