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potsgirl

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Everything posted by potsgirl

  1. D, No, I have no idea if the dark circles are for casein. How do you find out?
  2. Dizzysillak, I also have problems with my eosinophils getting really high. What do you do for your allergies? I'm especially allergic to basically anything living outdoors, perfumes, and I cannot tolerate a lot of drugs. Can you tell me more about casein allergies? I also have very dark circles around my eyes...Thanks! Jana
  3. I also see Dr. Goodman and love him. As far as I know, he sees patients of any age, and POTS is his specialty. I'm also in AZ, though I'm in Tucson, I drive up to see him a couple of times a year. Personal message me if you'd like to know more about Dr. G.
  4. Hi Dani, I see Dr. Goodman at Mayo Scottsdale, which doesn't help you right now, but I also see someone here in Tucson that works with POTS patients and who I think is good. My cardiologist is Dr. Ewy, pronounced 'a-v,' or I see his assistant, Connie Doner. They're with the Sarver Heart Center at University Medical Center, and work with about 10 patients who have POTS. Connie was great in writing up my symptoms/diagnosis for my disability, so you may want to take a drive to Tucson to see them. If you try to make an appt with Dr. E and you can't get in, ask for Connie. She'll see you first, then get you in to Dr. E, who is the head of the heart center, especially if she's really concerned about your symptoms. PM me for a phone number of more info if you're interested. I also have a great internist who works within the same system. Hope you're feeling better soon, and perhaps if you come down here to try out those doctors we can meet for coffee/tea!
  5. A+ A poll really would be helpful to see the results in an easier format. Do you know how to set one up?
  6. My doctor also advocates exercise, so I try to push myself and walk a couple of times a week for 30 minutes or so. Some days I can barely make 30, some days I can go 45, and I do think that moving more helps with the pain and prevents deconditioning of your body. I know it's really hard to do with chronic pain. I have small fiber neuropathy in my hands and feet, and in the morning I can barely walk or hold my coffee cup. I take Gabapentin after the Lyrica and Oxycontin didn't work for me, and it's taken the edge off of the pain. My doctor has me on 300 mg of Gaba three times a day, and then I take a 5 mg dose of Oxycodone in the morning when my pain is usually at its worst. I've also seen a pain specialist, who advised the same things. I've also heard good things about Cymbalta. Right now I take Paxil, but am thinking of trying to switch to Cymbalta. Don't suffer from your pain - ask about trying some pain relieving medication. It could really help to make your chronic pain at least bearable. Jana
  7. Naomi, I also get tested for amyloidosis. So far, nothing has shown up, thank God. It's very hard to find, from what I hear. I've had a couple of fat pad biopsies done on my abdomen (I keep telling them to take it from my thighs - there's more fat there!), and I'm probably due for another check soon. Why do they think you might have it? How are they testing you?
  8. I like some of the nutrition bars made by the same manufacturer, aimed at women's needs. They have a lot of nutrition, with 8-10 grams of protein, 4-5 grams of fiber, and good antioxidants. It's also a good source of calcium, folic acid, vitamin D, iron and potassium. I really like to use them when I travel, and keep a variety at home. You can find these almost anywhere, especially in the 'health food' aisles or Trader Joe's. You can PM me if you'd like to know more about them...Tuesday, I'm glad that the shot bloks are working for you!
  9. I'm up from about 6 am until 12:30, then I lay in bed and read for an hour before turning out the light and trying to take a nap. I'm up again about 3 pm until 5:30 pm, and then I'm back in bed reading until about 7-7:30. Lights out and the next day starts the same way....This is my main pattern, but I'm usually sitting most of the time I'm "up" - on the computer, reading, watching t.v. On good days I can leave the house for about 2-3 hours, sometimes more. All depends on the day, of course.
  10. I have a very narrow window of heat/cold intolerance. If I could find a place where it's between 70 to 80 degrees with low humidity all year long, I'd be set. AZ is not the place to live when so much of the year is incredibly hot! I can't stay out in the heat, and when I get chilled, like targs66 wrote, it takes me forever to get warm again.
  11. I was diagnosed with SFN at Mayo Scottsdale about 9 months ago. It started abruptly with burning feet, then the hands/wrists became extremely painful, as did my feet/ankles. Some mornings it feel as if something had broken my hands and fingers with a hammer. I have a lot of pain with this, daily, and am taking Gabapentin and ALA for the pain. It doesn't seem to do much, until I miss a dose and the pain escalates to a point where I can barely handle it. My doctor says it's from my POTS/OI, and I had the skin biopsy done to make sure. The test came back positive, and it's difficult to manage on top of the other POTS/OI symptoms. Christyd - did they do the skin test on your son? I thought the only test that could definitely show SFN was the skin biopsy? I guess it doesn't matter - he's not having symptoms and the only thing they can do for SFN is treat the pain...if there are other treatments available, please let me know! Cheers, Jana
  12. Just like a lot of the other posters, I checked that I could do moderate exercise, socialize outside the home (on a good day, and only between 10am to about 1 pm, since I nap from 1:30 for about an hour or so if I'm lucky), I try to stay up without a nap a couple of days a week. Exercising is only on 'better' days, I really have very few 'good' days, and shopping/errands are also on better days and I can only do one or two at a time. No carrying of heavy items, my sig-other gets the major groceries, but I can pick up a couple of things as needed or get a prescription. Then there are the days that I can't drive and am just in the house not doing much of anything....Difficult poll to answer, for me.
  13. Thanks, Rachel. I didn't know that either.
  14. I get the hiccups, and they're loud! All of a sudden, I'll just start hiccuping, and they almost hurt. Sometimes the episodes can last for quite awhile. I don't burp much, but with my funky digestive system, sometimes I get pretty bloated and pass gas - yikes! - how embarrassing!
  15. It took me about 1 1/2 years to get my disability approved, and that was in court with a good disability lawyer. From what I've heard, in most cases, we are turned down the first time and then with the appeal. I think quite a few people end up going to court, and you really need to get a lawyer after you've been denied the second time, or before that. The judge didn't need any time for consideration, he approved me at the court hearing. I got quite a bit of backpay, which was very helpful. I applied for disability the month that I had to quit work, thank God. It was still a very long time, but I was lucky enough to also get disability from my county job. Hope it goes well for you!
  16. Re: Calling Dr. Goodman. I live in Tucson and also go to Scottsdale to see Dr. Goodman. I saw him earlier this summer, and he changed a medication for me. I called when that medication was giving me problems, and his nurse spoke to him about it and called me back the same day. I've called him before, and either his nurse or Dr G gets back to me almost always on the same day. I can't think of any of my other doctors who do that! He's terrific.
  17. Ginger, I am very sorry for the loss of your father. I lost my father at 26, way too early - I still miss him, especially on special occasions. My mother remarried at the age of 74, so life does go on...Make sure you give yourself plenty of time to grieve, and be very good to yourself. You may need more rest and fluids, etc, right now also. Remember to take care of YOU.
  18. Just a short note to tell you that I'm thinking of you this morning, as you prepare for your hospital stay and procedures...I wrote you an e-mail that I hope you get the chance to read before you leave your home today. Why is it that you're alone in the hospital all of the time? I can't imagine that your daughter/son/friends wouldn't want to be there with you! You're so thoughtful to others, but it seems like there aren't many around you who are thoughtful to YOU. Again, I wish I were closer to you and that I could be there holding your hand right now. Realize how special you are to so many people - including me. ((((HUGS AND POSITIVE ENERGY YOUR WAY))) I'll pray a special prayer for you today.
  19. I agree with jennyg97. I use a fan every night while I'm sleeping, and we keep a close eye on the humidity. We do have a dehumidifier and use it when it gets too humid in the house. Both of these things help me. I do live in a hot climate, which is not good and summers seem to last forever, but on the other hand, it's very dry here, so that's helpful. Good luck with your daughter!
  20. Dani, Unfortunately, I think it is. I often have flu-like symptoms, and am sure I'm running a fever, but I almost never run a "true fever." My temp runs low like a lot of people on here, so when I read 98.6, I have a fever for what's normal for me. I'm also allergic to many things, and I'm sure that makes us feel worse. Do you take anything for your allergies? Jana
  21. My doctor also recommended 8-10 grams of salt a day. I salt my foods like a crazy woman, and I've tried salt tablets but couldn't tolerate those. So, I do the best I can with salty snacks/drinks and just salting everything in sight. I also drink sports drinks to help out a little. It's a good thing that I love salt - sometimes, in place of the margaritas I used to love (rocks, extra salt), I'll buy Crystal Light's Margarita mix (no alcohol) and have it with a ton of coarse salt.
  22. Thanks for sharing this information! I know it'll help people in the Forum (like me).
  23. I just want to remind posters that the use of symbols for swear words is not acceptable on the forum, especially if anyone uses a name of a doctor negatively. Please try to keep replies positive and supportive. Thanks! Jana
  24. Wow, PotsyTurvy, you're doing great on an exercise routine. I try to work out 3 to 4 times a week, but can't tolerate much weight work. I usually do about 30 minutes at the gym on the elliptical, or at home on my treadmill. Then ab work, but I can't work my arms too much due to my small fiber neuropathy/pain in my hands and wrists. I haven't found that exercise helps with my weak leg feelings, though.
  25. Hi Tinks~ I think this is something you should probably get checked out. Do you have a cardiologist? If not, maybe start off with your regular physician and get a referral if your insurance requires it.
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