Blog entries from Seven (formerly lnester7)

Seven (formerly lnester7) has a total of 130 entries.

  1. Seven (formerly lnester7)
    What was that??!!?!?!?! I really would love to figure it out what is causing pain like that. I have not made 2 miles walk in a few days so not sure it the walking was just too much. I feel better overall, I slowed down today considerably, Will start routine tomorrow hopefully can maintain the upswing.
  2. Seven (formerly lnester7)
    So I have energy alright but the pain has become intolerable, Usually when I get this kind of pain is because I am having an immune reaction or start up. I have only gotten this when I start new medication/supplement that touches the immune system but I have not added anything new so I am at a loss here. I don't think midodrine has anything to do with immune function. I also stopped the LDN...
  3. Seven (formerly lnester7)
    So my test has been going well. I have been EXTREMELY Active, I do not feel fatigue anymore (CFS like) I do get tired but not that deep bone I am going to die fatigue. I am set on 5mg upon breakfast of midodrine and 5 mg 4h later. I cannot lay down as I could on 2.5mg. So is kinda of hard when I overdo. But I mean I have been cooking for hours, going to mall for hours and so on. I have not...
  4. Seven (formerly lnester7)
    I went skating!! I have been pushing my limits and I know I need to account for ME so I don't relapse, but I always like to do this to see what is OI vs Deconditioning (which I believe is BS). I had a full day, did not rest nor stop one second, I have been socializing, playing with my kid, went out, made dinner, laundry...... I have no symptoms when I am on current dose. My muscle pain is...
  5. Seven (formerly lnester7)
    Ok so I had a friend doctor asked me why I was still so symptomatic with OI when the recommended doses of midodrine is 10mg 3/day and they have me on 2.5mg 3 times a day. So I decided to run an experiment. I tried 5mg 3/day first day. It was amazing but I took last dose too late so only slept about 2h. I got no PEM or fatigue so I knew I was unto something. Second day I tried 7.5mg 3 / day,...
  6. Seven (formerly lnester7)
    I really don't understand this CFS, every time I think I am ok and accept where I am, It turns on me, rules change, limits are different and is a completely different ball game. It is as if all the players change and all the rules change while you are getting ready to bat LOL. So I woke up feeling great and I mean great, No symptoms in my head, no other symptoms much at all. So my first...
  7. Seven (formerly lnester7)
    So since I stopped the allergy foods I am doing worse than ever. I relied a lot on carbs for fast energy. Now I don't even have that. I had a great family trip so I had great 2 days and over did it. Now I am payin for it. But overall is getting harder and harder again just to do the basic stuff. Imagine the big ones :rofl: . I am even thinking about stopping work because the going has...
  8. Seven (formerly lnester7)
    So the last thing that I ever thought about was having food allergies. The only clue was I felt better when I didn't eat and something I thought was IBS, when I went last to Dr My TH17 was high which I thoguht to be associated with allergies and a lot of inflammation. Also I would eat some stuff then get loose bowels and other times I didn't (will be clear bellow why) At this point I have...
  9. Seven (formerly lnester7)
    Sooooo, I am doing great, more energy, participating at family live more. But I am passing / balcking out a lot. I get those bouts and then they go away, I have been hydrating properly so not sure what boguht this on. Is very inconvinient because work requieres to call an ambulance if someone passes out. So I hide it. Is quite comical actually. I blacked out in front of a few people and like...
  10. Seven (formerly lnester7)
    Sooo I miraculously been doing much better of the "deconditioning" (I AM BEING SARCASTIC), I noticed I can just do more and don't get as tired. I went up one point in scale I would think, I have noticed an increase of energy and just general neuro symptoms from day to night. I do get emotional at night when I take the extra dose, but I know is the pill, as soon as I wake up I am my sunny...
  11. Seven (formerly lnester7)
    Sooo I increased slowly for the past week and added half a pill of famciclovir but yesterday I added the full pill AND OHHH MY. I got full blown flue like symptoms and muscle aches, also burning on the back around the spine. It has been rough 2 days, but in another way I have more energy. I did a lot around the house which I haven't done in a very long time. I forgot how rough the herxing...
  12. Seven (formerly lnester7)
    PACING sounds soooo good in theory. Sooooo On CFS I have learned not to push my limits but anything that needs from us to push that bit can get us out of our stable condition. So my dog run away, on a pretty steep hill. I knew the moment I went running after the dog that it was a bad idea, but is not like I could just sit there and let it go!!!! I have been doing great in general. Dealing...
  13. Seven (formerly lnester7)
    I am doing sooo good symptoms wise, I don't feel as sick with viral like stuff. I only deal with muscle pain (Mostly when I overdo) and head feeling (this one is mostly constant, like brain is tender) , I still get a lot of those crashes but I am smarter now to learn to wait it out BY RESTING. I get normal days more often than not. I sit on a chair and just exist. Is very exciting to be able...
  14. Seven (formerly lnester7)
    So, I came from work tired, I was with family in the table while having dinner. I was not symptomatic , just tired. So I put my head down in the table to rest. I don't remember if my husband moved me to the couch or if I did, All I know is I couldn't have made it to the bed upstairs. But when I am like that the first thing to go is the voice, so I couldn't ask to be put flat. It felt like...
  15. Seven (formerly lnester7)
    Personal note: Started day 2 on new sleep med. I feel very grogy in the mornings, Might need to lower dose. Overall I think has created a little fatigue. Will keep an eye, but I have spent the last 2 days sleepy. Still going strong, Brain clear, Not very symptomatic except for muscle stiffness in neck and muscle latic acid pain. Need to find a way to lower acidity?!?!?