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  1. I'm a gluten-free soy-free vegetarian, and my favorite dish is quinoa. You can cook it in a rice cooker (no standing, no stirring!), and it's a grain so I personally find it easier to digest than things with lots of fiber or fat, AND it's high in protein. And you can cook a lot of it at once and then heat it up later as necessary. I often cook a big pot of quinoa and a few different steamed vegetables on Sunday. Then all week I eat quinoa and veggies heated up in the microwave. I have a vegetable steamer and a rice cooker, so all in all it's pretty easy. And it's not nearly as expensive a
  2. For the most part, I look and act like a healthy 29-year-old woman. POTS affects me daily, but not enough to disable me, and the many ways I've had to modify my life are not necessarily obvious to others. For me, POTS followed a very long and dangerous illness, and I have other things going on that seem to be connected (unresolved thyroid problems, food allergies, etc). I am grateful that my health has improved and I am grateful to be doing as well as I am, but I don't know that I would consider myself a person in good or excellent health, and I definitely feel like I have a complicated and
  3. Florinef has been the most effective thing I've tried for mitigating my POTS symptoms. Honestly, even if it means I get glaucoma in twenty years, it's worth it, because taking it means I am a mostly functional person. I went from barely being able to work 5 hours a week to being able to work 20 hours a week, and I virtually have NO palpitations anymore and my tachycardias are much less severe. It's good to know potential side effects, but I wouldn't let them stop you from trying the drug. For me it's been the closest thing to a magic bullet that I've found.
  4. I have a friend who does not have POTS and does not have Celiac disease, but does have weird numbers when she gets tested for autoimmune diseases and does have joint pain. RA runs in her family. She does notice a difference in her joint pain when she doesn't eat gluten, even though she doesn't have celiac disease. She stopped eating it for two weeks, didn't really notice much difference, but then did notice an increase in pain when she started eating it again. She doesn't eat completely gluten-free now - she'll occasionally have a slice of birthday cake, etc - but she tries to eat GF most o
  5. So, over all my POTS symptoms are pretty manageable right now. I still get tachycardias and feelings like I'm going to pass out, but they are usually restricted to mornings. I'm able to do most of the activities I enjoy, so long as I don't try to do them all in the same week or something. But my fatigue is still overwhelming. I work part-time, and if I want to be able to do a minimum of household chores, socializing, and exercising, I can only work about 10 hours a week. If I work 20 hours a week I'm literally unable to do anything else - I just work my 20 hours and sleep the rest of the t
  6. Hi all, Thanks for the advice. My doctor's appointment went well - I felt like she really took my fatigue seriously, which was good. BUT she wants me to do a sleep study instead of testing my adrenal function. Also, I realized from reading the links you all posted, that I'm already doing half of what I would need to do anyway if my adrenals were off - I'm taking florinef and using seasalt. The florinef and seasalt have helped considerably. So part of me wonders, is it really important to also test cortisol? And would my results come back normal anyway, because of the florinef? Thanks again
  7. Hello all, I am seeing my PCP this week, and I want to ask her about addison's and/or adrenal insufficiency again, since I have pretty much all the symptoms, and I also have autoimmune thyroid disease and gluten intolerance, all of which often go hand in hand with adrenal problems. The last time I asked her about adrenal issues, she said that if anything was wrong with my adrenal glands then I would have a potassium abnormality in my routine yearly blood work, so she did not run any further tests. I know from reading here that a potassium level alone doesn't diagnose or rule out adrenal probl
  8. This is a tricky one to answer. SOME cardio activity definitely helps my POTS symptoms, and decreases the severity of my tachycardias. But I suspect my POTS was triggered in part by severe over-exercising and over-training, which strained my body and my heart. I know if I push myself "too much" then my cardiac symptoms are worse the next day; I suspect if I pushed myself too much for a period of time, my cardiac symptoms would get much worse. For me, building up to being able to go for a brisk walk has helped me. I think if I tried to make myself jog, or something "more" cardiovascular than
  9. Is there anything for people who CAN work, but only part-time? The problem I'm having now is that I can work about 15 hours a week. That totally exhausts me - I can't really do anything else beyond the very minimal (eg, I can't work 15 hours a week AND cook myself dinner AND clean my apartment AND get moderate exercise as recommended by my doc - but in a week, I might be able to work and do one of those things). But working 15 hours a week isn't enough to really sustain myself financially. I can BARELY make it paycheck to paycheck, but only with a little help from my parents, who both just
  10. I'm so glad this poll was brought up, because I'm struggling with this myself. Everything I've read recently suggests that new research shows that POTS and CFS are probably the same disorder. But my own doctors don't seem to know this, and/or don't agree with this. My EP, who I trust the most, says my debilitating fatigue, headaches and low-grade fevers aren't symptoms of POTS. My PCP, who is really the person who takes care of me since I have to drive two hours and pay a lot of money to see my EP, says the fatigue, headaches and fevers are "just POTS," and there's no need to look for any o
  11. Eating gluten-free has been the single most helpful thing in decreasing my POTS symptoms. I agree with others - it's probably a question of figuring out your allergies, instead of assuming we all have the same allergies - but eliminating gluten helped me a lot. Also, I was mis-diagnosed with IBS for years... and I never found relief for my GI symptoms until I eliminated gluten.
  12. Thanks guys! Everyone makes good points, so I'm going to take your advice. I am surprised at how, even after several years of dealing with this, I still have a great fear of appearing to be "making a mountain out of a molehill" or of appearing to be self-pitying by acknowledging that this illness does affect me in significant ways. I do have a tendency to dismiss my own challenges, with a kind of, "well, it could be a lot worse" sort of mentality. This community really helps me! Thanks so much.
  13. Hi everyone, I'm doing pretty well write now, and I am going to be starting graduate school in the Fall. Last time I was in school - five years ago - I had POTS but did not have a diagnosis. I had difficulty keeping up with my work load and had to ask for a lot of extensions. Since that time, my symptoms have improved, mostly because I have learned my limits and I manage my life in a way that supports my health instead of hinders it. Right now I work part-time, about 20 hours a week. I find it challenging, but still manageable. I do better when I am working closer to 15 hours a week. In gr
  14. yes, I have red dots, too! Lots of them. My doctors have always told me they are nothing. But, they started to appear at EXACTLY the same time I started having POTS symptoms. I never made that connection before, but it all started happening around the same time. But, I've had my vitamin levels checked lots of times, and I've never had a C deficiency.
  15. Yes, I have this too, and it has bothered me a lot. Partly because some of my doctors say, "Oh yes, that's just POTS" and some look at me funny when I ask if chest-pain is part of POTS. For me, it does get worse when I stand a lot, or when I am very busy. It does not really go away, although sometimes it is much better than other times.
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