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Roselover

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Everything posted by Roselover

  1. Thanks for all of these responses. LindaJoy, I too was very athletic before I got sick. I was playing tennis regularly and teaching preschool dance classes. It is encouraging to hear that others struggle with this too and I appreciate the suggestions for starting slow. It feels sooooooo slow to me becuase of how active I used to be and yet I think I can embrace many of your ideas. Thank you. KathyP, I too had a hysterectomy just last Novemeber. They left my overies, but I have wondered how I will know when to check hormone levels. I hadn't thought of my current fatigue being connected with this. I'll check with my doctor. Thanks And thanks to all!
  2. Hi Lisa, I'm new to the board, but sugars is one of the things I considered early on in my illness too. However, thought losing weight, I really don't see any difference in my health or energy based on sugars or any other foods for that matter. There just seems to be no rhyme or reason for my flares - at least that I recognize yet. Here's something else I seem to be different in than most - I actually feel better, a little more energy and less pain after a soak in my spa tub. I know heat is supposed to hurt us, but I feel worse when I am cold and better after the hot tub. I don't keep it too hot and don't stay too long, but from what I have read, being able to soak in heat is very unusual! Guess we're all different. ~Roselover
  3. I just read through the exercise posts. I am amazed that some of you can ride bikes etc. I have such debilitating fatigue that some days it's all I can do to get up and put some dinner in the crock pot for my family. I can sit up for about and hour before all energy drains out of my body. Some days, I can hardly make myslef lift my teacup (that's when I know I am really bad! ) So my question is, does this mean that I just haven't found what is helpful for my POTS, or is this sever fatigue due to something else??? I do some stretching in warm water, but have lost lots of my flexibility. If I am having a good day, I do some gardening which stetches and strengthens my muscles, but as for exercise, I just don't know what I can do that won't cause me a total lack of energy the next day. I have assumed I have to get the POTS under control first, but maybe not. Any advice or personal experiences would be appreciated!
  4. Hello everyone, I have been reading your posts and have found many of them very helpful. Thank you. I have been sick for 3 years now. I have POTS and Fibromyalgia. My POTS was diagnosed with a tilt table test. Then I had "autonomic testing" (done at OHSU in Oregon) and it showed most functions on the borderline of normal. My neurologist questioned the POTS and so I had another tilt-table. It defineately, showed POTS -again! The OHSU tests were done with poor equipment and the report was poorly written and contradicted itself. I started on propanolol and florinef. It dropped my BP lower and I felt even sicker. I stopped all meds for a surgery last November. I required extra IV fluids in the hospital, but they sure made me feel better. Now I have seen a new cardio who insisted that we give florinef another try. Started me on 2 a day plus atenalol. Again BP dropped. He increased florinef to 4 a day - headaches began. He reduced the florinef to 3 a day and I stablized, but no improvement in symptoms. He added ProAmatine. It didn't help BP BUT - I ended up in ER with heavy heartbeat and strong pressure/chocking feeling in throat. However, the IV I recieved helped my BP for over two weeks. Now, I am taking floinef 2 a day and atenolol and I have added a sustained release salt tablet, but planning on getting off so we can do some adrenal testing. I don't know what else to do. I am hoping my doctor will prescribe a regular IV treatment. I don't understand why it works better than drinking water and salt. We are looking for the right doc to visit - anywhere in the country. (Although I wish I could find one on the west coast - Oregon or Washington) My family physician is great, but doesn't know anything about all of this. She will work well with another doctor who does though. So... that's my medical overview. I used to be an active person with lots of church activity, gardening, tennis etc. I have three lovely children - all very helpful in taking care of me and a husband of 21 years. It's hard on him, but he is very caring and helpful. Thank you for this forum. I look forward to getting to know some of you and for the help I know I will find. ~M
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