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Blog entries from lnester7

lnester7 has a total of 97 entries.

  1. lnester7
    Sooo I went to see electro, basically he told me to push thorough it and exercise for POTs, I am also getting a TTT but he said that he didn't expect anything different, besides that I have mild dysautonomia. My respect to those with severe one!!!! He did give me Florinef to try. I started half a dose (.5mg) (he didn't tell me to do so, but I have seen posts here). So far sooooo good. Not sure...
    lnester7, Aug 22, 2012
  2. lnester7
    As some were worried about, I did crash with exercising. I have been kind of crashed for a few days but not too bad, just incapable of producing energy but other symptoms are tolerable. Having some mood swings but I think is the sleep med withdraw. I quit the temazepan that I used to fall sleep. I am still on trazadone 100mg to stay sleep but I am waking up about 4 to 5 times a night so not...
    lnester7, Aug 20, 2012
  3. lnester7
    Sooo I was symptom free pretty much at rest so I decided to add exercise again :confused: . First day was Good, I did 20 min of easy stationary bike. I got little burning on spine and head, not too bad :thumbsup: . Second day, I did 1h of easy bike. Got Really bad burning in spine and head, I am also now experiencing the weirdest pain in neck, kinda in the base of the skull (left side). So I...
    lnester7, Aug 18, 2012
  4. lnester7
    I have more stamina overall, I have been doing more with family on weekends but I get this small crashes too. I am wondering if I am really getting better, or if by just doing nothing, I don't feel bad as much. I am concerned about the progression of the disease and If I am going to get to my before crash level again. I have been asking the veterans CFSrs if the intensity of the symptoms gets...
    lnester7, Aug 14, 2012
  5. lnester7
    Sooo I have had great days! I am resting during the week and having close to normal life on weekends, I am running around and trying to participate more on family activities. This vitamin powder is really doing the trick. Unfortunately now that I am seeing progress I have to stop the imunovir for one month. I am trying to decide what to do to maintain my current state. I had a lumbar puncture...
    lnester7, Aug 8, 2012
  6. lnester7
    I had a big crisis again about 2 nights ago, the burning in head was so hard I was crying and ready to curse the day I was born. I prayed, haven't done that in a long time, I have not received relieve in such a long time that I don't bother to ask for mercy anymore. The feeling of desperation was so big that I remembered the verse: 1 Corinthians 10:13 There hath no temptation taken you but...
    lnester7, Aug 3, 2012
  7. lnester7
    It has been some interesting days. Doing better in a way, I am finally feeling some progress. I was Banned from taking b12 from Dr because My levels were to high, So I kept away from the vitamin from fatigue to fantastic which is what I use to get out of relapse, the powder really works for me but it has 3 problems: Gives me Acne, Destroys my stomach and b12 in general is giving me angina pain....
    lnester7, Jul 31, 2012
  8. lnester7
    OMG! I had a sleep study with CPAP and I just had the best day in a long time!!! When I have these days I just get a glimpse of how life can be!!! You know how I complain about head buzz? when I first got the CPAP machine on, I started to feel like my brain was a balloon and the buzz sensation started going away per area. First the frontal lobe and slowly in all head. By the time it was morning...
    lnester7, Jul 26, 2012
  9. lnester7
    I have been wanting to explain the general terms for the "normal" and newbies people. Brain fog, we all experience it differently, but I will give you examples so you can identify it or understand you loved ones. I have different levels of mental capacity depending how bad the brain fog is, and this differ from day to day and even through out the day, The more I do physically, the less I can...
    lnester7, Jul 23, 2012
  10. lnester7
    Update: I had the most wonderful day yesterday. I could go out with my family for a walk in the woods (I would lay down every 5 min) So I can definitely do a somewhat normal life if I follow the 5min on 5min off (rest) rule. My family is adapting better. So it has made the whole difference in my life when we all understand and adapt. When we got to the trail my 5 year old saw a bench and...
    lnester7, Jul 23, 2012
  11. lnester7
    Thank you all for the kind encouragement and for reading my blog. When you all let me know I am not the only one struggling with these things, it just makes CFS mentally more manageable overall. Update: Brain fog keep increasing, I cannot even watch movies, I think is the walks. Minor crash after therapy: 2 hours in bed. Exercise is on hold until further notice or maybe I will just change the...
    lnester7, Jul 19, 2012
  12. lnester7
    So mentally my situation is the following: I was raised that pain is personal and when you are sick you suck it up and keep going. So, that did not work well for me in the first 5 years of CFS so I decided to change. I am wondering what level of detail is necessary for family and friends to understand the situation without sounding that you are whining all the time, what is the balance...
    lnester7, Jul 17, 2012
  13. lnester7
    So I stopped blogging because I figure the Blog is public. What a dilemma. These are very embarrassing thoughts and personal feelings, I don't mind helping here and exposing myself after all the things that we share with each other. I am just not sure I am ready to open that to the world. But apparently some people are following my progress so I decided to sacrifice for the grater good....
    lnester7, Jul 17, 2012
  14. lnester7
    So today I woke up better, didn't sleep well again but for some reason I felt better. I put ice first thing in the morning on my head. Ha! those that thought it was not possible to discover something better than coke!! Ice on head is a godsend!! Like I was feeling like a normal person, human and all, I decided to exercise, 5min into it, I felt so good that I did not consider my natural 5min...
    lnester7, Jul 13, 2012
  15. lnester7
    So I had another horrible night of sleep. I was miserable when I woke up and had that burning again. I put ice and felt better. Got out of bed finally about 9:30am. I had a Sleep Lynk and apparently my oxygen is bad while I sleep and have mild apnea again. So the dental appliance is not longer working, I am going to get another sleep study to try the mood killer (CPAP). SEXYYYYYY!!!!! Overall...
    lnester7, Jul 12, 2012