runningshoe

I drink chicken broth or vegetable broth with no msg or yeast extract. You can buy good quality broth at Trader Joes or whole foods. Hey - I haven't had a cold in 3 years - must be all that chicken broth! For any of you who have bladder problems - gatorade is a no no and so is any artiticial sweetner. Learned that the hard way......

Hi I live in an area severely affected by Lyme. 7 people on my street had it last summer - who knows how many this year. My lyme tests are always negative. I took my daughter to a lyme specialist who also happens to be a neurologist. When she read our medical history and saw the stuff about me she said get tested for Bartonella. It is a co infection. Maybe suggest that to your son's dr and see what he says. I guess Bartonella causes neurological damage. Good luck!

Hi all I hope you are staying cool this summer. Anybody had a cortisol stim test? What can I expect? Thanks! lina

How would I determine if it is the cause or the effect?

When ever this happens I need to have it reexplained to me...some weeks my bp is consistently low. Other weeks it is very high. This variance in bp confuses me every time. I understand the low bp - that's what got me here in the first place (pass in car). I understand the high bp - I have had that since having kids. But why both and why so variable? Anyone understand this better? The problem is how to best medicate for this.... the betablockers can make me run low, the florinef can make me fun high...ugh THanks!!

I have interstitial cystitis and POTS. I work about 12-15 hours a week and have 3 kids at home. I am dragging tired somedays but I have the perfect job - I teach preschool. We make frequent trips to the bathroom and lie down when we are tired!!

Mornings are my best time. I am at my most tired in the late afternoon. I am sort of over charged - pots and jittery, for the rest of the evening. I have to lie down to shut off that feeling.

Hi I just wanted to add that i have pots and hypertension. I have had high bp for almost ten years and pots for two. This doesn't mean I don't have low bp days - I do but I also have high ones like today 140 over 100. Ugh. I have 3 kids and work part time. I could not work full time and be remontely funcitonal. But I am busy and you will get back to doing some things again. I have to pick and choose what I can do in a day. Some days I can work, cook, walk the dog, do the homework hours etc. Other days I can't do much. You will find a balance. Hang in there.

Thank you for doing this!

Hello I try not to over analyze my pots these days. I have had it for 2.5 years and I learned how to manage things pretty well. However, I have been experiencing a real flare and I just want to learn from it and so...let me know what you think. The past month has been very very busy and stressful. A tragedy struck in our town and I found myself very overextended with care giving, attending to details, pushing my body with late nights, lots of standing etc. There was also incredible grief. I was able to get through - just a bit tired but I was grateful that I was able to do the things that were necessary to help out. I also worked and took care of my family as usual during this time. A few days after things started to settle down I noticed major blood pooling (blue feet), dizzy sick feeling, tired, etc. I even slept through the night two times and that hasn't happened in over two years. I must have been super tired. I have had low bp days and now am having headachy high bp days. Is this from over doing it? What happens inside our bodies that makes too much activity lead to an increase in symptoms? I understand that we get tired, but why the other things as well? Thanks!

I was definately sicker then because my dr had me stop exercising until we knew what was wrong with me and I got deconditioned. There was also the added element of worry and anxiety because I didn't understand my body and what was happening. I had to learn to rethink everything I did. That added stress. With pots everything is just more extreme because your body is under stress. I can work a 6 hour day now but then not do much more later. Not much more still includes making dinner, helping with homework and maybe some light chores. Not too shabby you might say! I can only exercise for about 30-45 mintues now. More than that and I don't bounce back. If I do too much one day I will be tired the next day. I do not work everyday. Use the spoon theory (google it) or a points theory to help explain to others how you have to plan your activity based on your energy level. Are you on meds? Are you salt loading? The best investment I have made is seeing a therapist to help me learn to live with Pots (I also have intersitial cystitis which really *****). Pots can make you feel sort of nuts because your body does all kinds of wierd things and you spend a lot of time analyzing everything. Slow down, drink lots of water, rest, play with your kids, eat healthy, get good medical advice, cry when you need to...things will get better. lina

I know you are really scared right now but try to slow down and not jump too far ahead. You still have a lot to learn about your body - it takes time to figure out what makes us better and what makes us worse (we are all so unique). The most important thing for me is to listen to my body and go at my own pace. Maybe you won't be able to spend all day at the park with your kids but maybe a certain part of the day will be your high point and you can schedule outings around that. That is just one example. Two and a half years ago I was hit by pots and sort of fell of the earth for a while. It takes time to get the meds right and get your lifestyle readjusted. I have 3 kids, work part time and lead a pretty active life. I have yet to return to my previous level of activity but I get to what is important. Breathe, don't panic, get good drs, read up in the illness, write on this forum, give yourself some time.... lina

I don't have an answer for you and I don't know much about you (only visit the forum on occasion these days). But this I do know. The worry/why is this happening/oh no not this again/what should I do differently/ etc. about symptoms only add to the original symptom. This is true for me whether it be pain (I have IC) or Pots. Although it is not easy to do, you must befriend your body, recognize the symptoms as telling you something and try to bring some comfort or peace to your body. Of course you should always check with your dr when something is alarming or different. Once you get the everything is okay from the dr and you agree with him/her, take some time to heal and restore. Watch a funny movie, call a friend, lose yourself in a book, pray, meditate, listen to music, whatever calms you down. Repeat "I am ok" to yourself until you start to believe it. Give your body a chance to settle by settling your mind. I am not suggesting that this is easy to do. It is an ongoing struggle with a chronic illness. Don't for get to breath. Sending you healing wishes, lina

dx at age 42. Almost 44 now.

I take in 4-19mg of salt a a day - note salt and sodium have different amounts. I drink organic chicken broth.

Your story has left me in tears. Being a mom is so hard even when our kids are relatively healthy. My heart goes out to both of you. Through my health battles this I know: don't give up. There is something that will help. Keep looking. For her spirit, remember to make her laugh (my 14 yr old daughter loves the Reba series so we have been netflixing them). I am sending you all kinds of good wishes.

Help me understand this better because I have been staring at my midodrine prescription for 3 weeks and have yet to take one.... How do we know what form of pots we have? I have definte blood pooling in the abdoment and my legs are mottled from vasocontriction so does that mean I am a normal flow? And midodrine wouldn't help me?

The salt thing is tough but if it makes you feel better and letss potsy then it is worth it. I easily put on 5 pounds with the salt and florinef. I haven't worn my wedding rings in two years. This isn't fat remember, its just water weight. I also used to be super careful to eat low sodium. Now I drink chicken broth! Hang in there.

It seems to me that since our bodies have to work extra hard to perfom basic things like standing up, our bodies might not have energy to fight off illness. I also believe that the stress hormones that are released in pots probably compromise our immune systems. I'm not a doctor so don't quote me but.... Get as much rest as you can!

I was told between 4-11g a day. My dr thinks salt pills are two harsh on the system. I drink chicken broth and get both the salt and the fluid that we need. You get used to the taste and I buy the organic kind.

I have the multicolored fingers too! The worst is if I forget my gloves and have to drive on a freezing day.... Costco has great imitation smartwool socks - big pack small price!

The best thing I did when I was hit with this illness as well as interstitial cystitis was start seeing a counselor who helps me navigate the medical system and cope with the ups and downs. It is where I can go to think through medicine changes, plan for the questions I need to ask drs or vent about the flaws in the system. Do you think something like this would be helpful for you? Would your insurance cover it? Hang in there!

Hi Sorry to hear you had a bad experience. I love yoga but never put my hands above my head. Always keep them at heart center, as the yogis call it. Also if you are doing flow yoga make sure you take time to raise or lower your head. I always take the spot next to the wall so I can catch my balance and hold on if my head spins. I also have trouble with balancing poses and hold on to the wall. Good luck and hang in there!

He is so not the guy for you! Don't look back! If he has a child he already has his hands full and his first responsibility is to the child. This doesn't mean that you can't be in a relationship and have kids and have pots r be with someone with pots. But not everyone can juggle this life. My husband has his moments when it is too much for him. I have learned through the years that people who want to be with you will find a way to make it work. Wait for the one who will do this and focus on the family and friends who are already in your life. Hang in there.

Hello! Just wondering who else gets very mottled skin. It is not the purple look of blood pooling but a mottled look all over my legs. My dr says it is vasoconsriction. What I can't figure out because my brain is mottled too, is why this happens and how it fits into the pots scheme. It usually only happens in the evening. It is how I know I have had a long day. I am so impressed by all of you who can keep track of the current research and what it all means. I can't even remember why my legs look like they do! Thanks