Blog entries from lnester7

lnester7 has a total of 122 entries.

  1. lnester7
    This is some crappy decease when you are doing well or you get used to the symptoms you have, something else pops up and you have to start all over, the research, the reading the what do I do..... So I have been struggling with lymph pain and body pain, the body pain stopped after vit D was stopped. Then I sun bathed and the same happened so I am still sore. Maybe is the pain is back or was...
    lnester7, Apr 11, 2014
  2. lnester7
    Note to self, do not use Vit D. Sooo I have been struggling with muscle pain for a while. As soon as I stopped Vit D the pain stopped, I had observed this before, I am pretty sure is when I go over 1,000 where is more obvious, at 1k I feel it on and off. Also the brain issues cleared up about one week after stopping Vit D also. Will be more careful to use Vit D in the future, maybe use...
    lnester7, Apr 4, 2014
  3. lnester7
    Quote from the IACFS conference point in this matter. I am soooo relieved somebody brought this up (specially an experienced Doctor) and I am willing to discuss this now. By far the freakiest symptom and scariest one: the thing about this disease is those periods of time where I cannot account for or remember at all, Or those were I partially remember parts but not others (specially with...
    lnester7, Mar 20, 2014
  4. lnester7
    She was so care free. The world her playground, the sky just there to be reached. There were no limits to her insatiable curiosity for life, there were no enough hours in a day to learn it all, to absorb like a sponge life's mysteries. There were no boundaries, life was meant to be lived, the rain to dance on, the ocean to be discovered, the world to be conquered. Her smile would light up a...
    lnester7, Mar 1, 2014
  5. lnester7
    So After my crazy ski trip, I finally crashed about Wednesday. Which I expected something to happen. The weird thing for me is that I did not have other symptoms other than couldn't produce energy (AT ALL). I experienced that really muscle tiredness while trying to go up the stairs and basic functions. I didn't get any other symptom (except the constant joint pain that I have been living...
    lnester7, Feb 16, 2014
  6. lnester7
    This is so funny, My husband yesterday said "Deconditioning theory is the biggest bunch of crap! " He was like insulted, "can you believe that you went skiing and did that much. This people talking about decondioning do not know what they are talking about, never had CFS or lived with one that had it. This was impossible a year ago." Is funny, I have not even attempt to go skiing but I am...
    lnester7, Feb 9, 2014
  7. lnester7
    So I have been doing great. I finally got to see the electrophysiologist again. I feel so frustrated because I have asked him to increase midodrine before and he didn't let me do it. I had an appointment on thursday and had a crash in his office. I was sitting in his bad chairs in the waiting room for one hour. I had run out of the meds by then (med only lasts 4h in the blood) and I didn't...
    lnester7, Jan 11, 2014
  8. 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.
    lnester7, Jan 5, 2014
  9. 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...
    lnester7, Jan 3, 2014
  10. 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...
    lnester7, Jan 1, 2014
  11. 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...
    lnester7, Dec 28, 2013
  12. 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,...
    lnester7, Dec 26, 2013
  13. 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...
    lnester7, Nov 29, 2013
  14. 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...
    lnester7, Nov 25, 2013
  15. 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...
    lnester7, Nov 8, 2013