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friday

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  1. Thanks. it helps to know that I'm not alone on this.
  2. How do you deal with doctors who won't listen or believe your problems? Like my temp. My normal temp is 96.6 so If i get a fever of 99.8 I feel pretty bad. My face even gets red. Yet when I try to tell a doctor I had a fever. I always know it' s coming. "How high was it.? ..um 99 . OH that's not a fever... Yeah but my normal temp is 96.6. yes but that's not a fever. normal temperatures can fluctuate and be a little over 98.8. Yes but my normal temp is 96.6..and on and on. They just can't accept that since my temp is low, a 99.8 is equal to about 101. ANd I feel really bad. I dont' understand why it is so hard to get through to them. I have the same problem with my salt levels. I need to know if they're ea little abnormal. Sometimes doctors will tell you everything's normal, after taking blood tests. They ignore little lows and highs. I tell them I need to know the numbers because i have trouble with keeping my electrolytes up. ANd they say oh well there's always little fluctuation's that's okay. And I then have to try to explain to them, if i can get a word in edgewise, how important it is to me that these levels be normal. They don't understand how it effects me because their minds see everyone as a being normal. Just like the temps. This is what's normal.-98.6 Why is it so hard for them to except that some of us aren't normal. It makes it so hard . ANd when I try to explain it they don't' want to hear it. They think it' s just overreaction or well who knows. It drives me up the wall. I also have this trouble with my iron anemia. I feel it way before the hemoglobin shows it. They took me off my iron tables cause they said I didn't have anemia. I said it' s becuase i 'm taking iron tabs but of course they said I didn't need them so a few months later I feel weak and ask for the test. Of course hemoglobin shows up fine. Then I keep feeling weaker so finally i got a doctor after twisting his arm to do ferritin and saturation levels. They came out so low he had me back on iron pills immediately. Yet before that he thought I was fine. Don't understand this. So maybe it isn't' normal for iron to effect people in that way. Maybe most people don't' feel it until the Hemoglobin clearly shows it..but I feel it way before. Why is it so hard to accept that some patients are different. I'm really nervous now because my GP has left. I have to get a new one.Not that he was perfect but over the years he's actually saw the weird things my body has gone through.LOl And so we had some kind of an understanding. He also knew my CFS doctor and had respect for him so that helped. If my CFS doctor said something he'd consider it. But now I have to go through it all over again.I'm so sick of this!
  3. I was just curious , do others here find it's hard for them to get rid of infections or viruses? It seems whenever I get sick it takes longer than normal to get rid of these things. My brother and aunt had a stomach virus and they got rid of theirs. Then I got something and at first it seemed vague. I was just kind of sick, but then eventually I got really sick and figured it was the same virus they had but it stayed with me. I went to the doctor and she even gave me antibiotics because she thought it was a bacterial infection. But then after the five days of antibiotic I still had whatever it was. I still feel sick now, about a month after it started, but it seems like the fever has gone down and the symptoms are a little better. I 'm not even sure what it is. This seems to happen whenever I get "something" It takes a while to develop and then it stays with me for a long time. I see other people i know get sick , then they're sick bad for a few days and then they have a few days recovering. I was just wondering if anyone else had a similar problem to mine. Whenever you just seem to have a harder time fighting things and have them a longer time than normal. One time a doctor said I didn't have a virus or infection cause it wouldn't last over a month. But then what was it.
  4. Yeah that's the problems with nutritionists. They used to dealing with certain things. I would think if they a good nutritionist they should be able to help you figure out what's right for you as an individual..but maybe that' hoping for too much.
  5. I was thinking would it be possible to see a nutritionist? They might have some answers of these questions. I know certain foods effect certain people in different ways. Like someone mentioned protein and the kidneys. I know my Dad has liver problems and so extra protein could be a problem for him, So, maybe you should check with a Nutritionist so that they can help you eat right for your body.
  6. Melissa, I'm so sorry for your problems. I know you probably aren't up to answering this but I thought i"d ask some questions anyway. You said you originally had some tests..blood cultures and they didn't show anything But later on they found a partially collapsed lung and pneumonia? sorry If i didn't get this right but I'm having trouble reading right now ans I am not feeling well. I am having fever too. Not as bad as yours but daily. And my normal temp is about 96.5 so when I go to the doctor and it's 98.8 they'll say oh that's not a fever. I tell them about the fact hat I run low but they never really trust that. plus my GP left and I 'm left to start over with a new one..good timing. anyway, Last time it was 99.9 so they paid a little attention to it. Gave me antibiotics zpack which didn't help. SO I guess it would be equal to a 100 to 101 temp that I'm having. IF I was normal. I'm trying to figure out where mine in coming from also. Like I said you're is much worse. But I know how it feels to feel sick from this fever every night, and not get any answers, So, I hope you get your answers and get this resolved.
  7. I was just wondering if there is any way to take potassium besides hard pills? I had to begin supplements again. WHen I used to take them sometimes they would come out in the toilet. I had IBS and sometimes I get that with certain pills. So Some of them I have to chew or get a liquid version. I was wondering if anyone else had this trouble with potassium and what they did. I don't' know if I can crumble them up maybe? I just don't' feel comfortable not knowing whether or not they are getting into my system. Since my Potassium is a little on the low side I want to make sure I get the benefit of the pill.
  8. Thanks for all of the replies. I am so confused about what to do though,LOL It so hard because it' s different for everyone. I do see that some of you had trouble with the hormones. Right now I'm thinking maybe I should try to stop the Prempro and see how it feels. I'm scared because i don't know if maybe I just need more hormones. Maybe it's not enough. Then it could be too much or this paritcular brand could be upsetting me. I just wish i knew one way or the other. I've been feeling sick now for a few weeks. And now I feel more exhausted. I saw a GP and she said to try a week off and see if it helps. I just hope it helps me feel better. well thanks again.
  9. HI. I've recently had my ovaries removed. I tired to keep off of HRT but I found I was just getting too many bad symptoms. I felt I needed something. Anyway they put me on Prempro, which is in the same family as Premarin. I think it' s been a month. The thing is I feel very weak and tired. I felt that way before the Prempro, But I feel it' s gotten worse. Now I have read an article by the author of "Screaming to be heard" and in it she stated that Premarin was not good for patients with CFS or Fibro as it could worsen symptoms. I have been told I have CFS prior to being diagnosed with POTS and as we know a lot of the problems we with P.O.T.S. have we share with people with CFS such as low blood volume. So I am concerned about being on this drug because I am concerned it maybe making the CFS worse. I was wondering if anyone here is on HRT and if so what kind? Have you felt an improvement of your symptoms after receiving HRT or ERT?
  10. I think it's mainly because salt can cause a high BP. You always hear about how bad salt is but people don't realize if you have a salt deficiency it is going to help you. Salt is bad for most people, so people just assume it's bad for everyone. In most cases of P.O.T.S. we are trying to raise out BP. Of course like some of the people hear have said you have to monitor your BP and your electrolytes while you are adding salt and water. But if you already have high BP and P.O.T.S. that's a different story. You'd have to go about things differently and i"m not even sure how. You'd have to ask your doctor and some of the people her who have a high BP about that.
  11. I haven't been reading much lately . I can' t read much cause I have trouble with my eyes, but I read a little bits at a time . I have read are books are to do with Zen, budisum, The I ching, Etc. So I have heard of Thich Nhat Hanh and particularly that book. I guess I was afraid to read it. LOL See, I had a near death experience years ago. After that I didn't really have a great fear of death. But then my brother died, and then I went through an experience in the hospital where thought I was going to die after that. Part of what was hard was that I felt bad for leaving my family after they already lost my brother. The other part was just not knowing what happens after. I'll go over to Amazon and look for the book. If it isn't the right one I can look for others. I think it might be good though because I have found books on eastern philosophy to be helpful.. It 's something I have to deal with. And I have to find a way of dealing with the fear. Thanks for the suggestion.
  12. Angela, I'm so glad that you're child is alright now. That must have been so horrible to have to go through. But I see you know what I mean. It's a reaction that you don't really think about, it just happens automatically. I'm glad you found something to help you. My mother's a big reader. I wish I could read but I have trouble because of my eyes. I have thought about books on tape. I htought maybe I would try to listen to that at night and maybe it would be relaxing. I'm gonna look tonight and see if they have any online that I can download right into the computer. Thanks for the suggestion. The only med that really helps with anxiety is Ativan. I've tried other things but they never seem to work. But it doesn't put me to sleep. thanks for sharing your experience with me.
  13. Thanks. I think that's the thing. I'm trying to deal with the fear. It' s so hard. It' s just hard to address all of the issues I have in therapy in just 45 minutes a week. I need about three hours.LOL I want to try hypnosis with my therapist. Problem is right now I'm too sick to ride all that way..She's pretty far so we do phone sessions. But I was hoping that might help me deal with the fear easier.
  14. Thanks, Yeah I have done those types of excersizes in the past, and found them helpful. I guess what happens is when have trouble breathing it gets harder to do them. Or when I feel this really weak feeling. It' shard to describe but when I am falling asleep, it' s like all the life is draining from my body. Then that scares me and I wake up. I can do the excersizes and get to the point of relaxation enough to start sleeping but then like I said I get these weird feelings and get scared and then that wakes me up. I gets really frustrating relaxing yourself with all of these excersizes and then get jolted awake anyways....I guess what I really need to do is work on the reaction I'm getting to these feelings. trying to re frame the way I'm thinking about them. Not an easy task. But all the support helps. Thank you.
  15. Thanks for your understanding. I also have been taught the relaxation techniques..for trying to sleep etc. I guess it' s difficult.. sometimes it helps and sometimes I just get nervous about using my breathing to relax. See when my brother passed one o f the things that was so upsetting was he couldn't breathe. So the subject of relaxing my breathing brings up conflicted feelings. It' s hard to explain. But I'm trying to get through this. Talking about it helps. I have tended to avoid talking about the breathing thing for a while. But I need to address so .. Thanks for your understanding.. it helps.
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