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About nadine

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    New England
  1. thinking of you and hoping you will be able to return home soon------
  2. thanks for sharing---- I am months behind on reading posts and learning about all the new members, but it is so good to read an encouraging post from a long time member. Sounds like your bday was wondeful.
  3. Amy-- I am sorry to hear that things have been so difficult for you. I haven't been on much lately either and very out of touch with updates on everyone and all the new members. I know you have been battling for a long time and it is hard to stay strong. Let the better days lift you and hang in there. I know all our situations are dift.. but I can relate to the inablility to walk more than a few feet or stand for any time and needing to use a wheelchair. I will be hoping and praying that your health will improve and you can enjoy some of the summer with family. take care
  4. wonderful--- hope he enjoys his trip or trips!
  5. Heat intolerance is a huge symptom for me and most I see on here. I can't tolerate it over low 60's, summer time over 70- I have A/C on to 60's. This is when I am most comfortable. My family is constantly freezing due to this. I also have very poor sleep due to waking up from being too hot, taking all the covers off, sometimes opening windows in winter. It is awful for me. I can't stand in front of anything hot on stove, no steamy showers, have fan and window open for shower. Eating makes me very overheated after for about an hour. I think it is right up there on the top of my list as far as m
  6. thinking of you and your family- wondering how the surgery went?
  7. I also use zofran and did get preauthorization for this and had no problem getting approval. This is done yearly, but also just started getting the generic in last order. I haven't tried it yet, but assume it will be pretty much the same. I have pretty good insurance so it is of almost no cost to me-- but it cost thousands of dollars, very expensive medication. Melissa- I found it interesting that you stated it doesn't do much for the "low- level nausea"- I find the same and I also use it for more intense flare ups or riding distances as I have a lot of motion sickness now. It does help. IV
  8. wonderful --THANKS FOR SHARING! Did you find any specific medications or treatments that were helpful for your recovery?
  9. tried it and could not tolerate it at all- felt extremely anxious on it.
  10. I did try COQ10 at 50mg I believe it was once a day- and I was very excited at the possibility of this helping in some way, whatever it may be as I had read that it was being used for so many things. Well, I tried it for about a week or so and was feeling worse every time I took it. I was more lightheaded and could not stand to lift my arms at all above shoulders- was in bed a lot more on it. My HR is very low already with the atenolol- so not sure what the deal was. Again---everyone is dift. My physician was deft. for the attempt to try it-- just didn't work for me.
  11. No real great words of wisdom, just wanted to say thinking of you. I am also having a really bad week. I know what the days are like when you feel you really won't make it through another day- physically and mentally. Is it worth being seen by your regular MD just to see if something else is going on? I also continue to seek diagnosis and treatment for what is going on in this crazy mess of a body and frustrated beyond belief by symptoms, lack of response to treatments tried and the frustration with physicians. All of this often keeps me from wanting to call my physician to tell them someth
  12. This was a recommended med by one cardiologist for me, but my family MD and another cardiologist--said no- thought it was too risky and not comfortable with it--unless last resort. Family MD wanted no part of it. I really think it varies greatly with each individual. For me, I trust my family MD- most of the time, as he knows my medical hx best.
  13. Right there with you- I haven't been on as much in the past few months, one of my coping mechanisms I guess- avoidance. I find such support and information here and love reading the posts, but sometimes I think I need the break from reminders of what life is right now and may be indefinitely. I have also tried numerous meds-- all making me worse, as well as dift. therapies and treatments. My 5 yrs is coming up as far as being diagnosed with NCS and 20 yrs ago diagnosed with CFS( hard to believe), now 3 yrs of being completely disabled by health problems. I must say most days I try not to fo
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