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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blog entries by Seven7
So I was talking to mom, and I said "I am tired today" and she said something, which I replied. "Unfortunately CFS does not kill you that easy, so stop worrying every time I crash, you cannot get this worked up about it"
She said but you are being so negative, you have to fight, do not...
So I have been ok for a few months. The only issue I had was bones popping out of place WAY to often, Since then I decided to lower the midodrine since I was doing better and that did the trick.
But I have not have a crash or the regular CFS fatigue for about a few months.
Then today I...
This is amazing, I always get "normal" energy when I get a cold, or several viral (Zica also) and it is a constant for me.
This week I felt fluish and just wiped out, first day I was very weird out because when I feel a cold I am supposed to feel amazing (I am the only person in the world that...
This is more a note to self kind of blog so I can track my progress.
So I do well overall CFS wise, I struggle more w POTS I would say. But my biggest thing is PEM. I really need to get a handle on this thing.
So I decided to concentrate on the energy production and PEM issues (I have the...
I have been thinking about my year and where I am at with CFS. I feel I have gotten out of the miserable state I was constantly in, that place where everything you do feels like torture, where you question how you can make it for another minute.
I mean I had suffer, the only word I can use...
One of the gifts that CFS has given me, is the inability to hold things with my left hand.
If I think, make a conscious movement of the act of grabbing or doing whatever it is I am doing, it is ok, if I automatically grab something and think about something else, I will drop it.
I know with...
I had the best summer I had in 10 years, I traveled and did a lot of the things I put in my bucket list when I am bed ridden.
I keep a notebook next to my bed where I "create" hope by doing achievable goals of things I desire to do but can't in the moment, but I can do as I get better: silly...
OK So do not ask, I didn't change anything much and I have been with 0 symptoms. I have a clear head and I don't feel pain anywhere or anything bothering me today (probably I will get my period since I get remission on it).
But in these past few days, I have been noticing the brain fog finally...
OMGGGGGGGGGGGGGGGGGG
I was on Friday and last week with the worst brain fog to history. I was dragging myself and I was called to go into the office. So I did.
As I went in I was trying to keep a low profile, I had tones of office work (admin) so my brain fog was not much of a factor, I could...
So I had a unscheduled crash, I say was unexpected because was not fall, I did not overdid, I was not sick. I really do not have an answer. I did all that I was supposed to do.
But this one hit me hard from an emotional point of view. Not because a particular reason except that JESUS CHRIST how...
So I have good and bad to report. The bold has the meat of it all.
If you ask me what stage you are in CFS, I would say getting better and rehabbing my body.
Brain is great:
My brain is doing AMAZINNNNNG, the good news. I have so many lucid periods where I feel no CFS at all (the overwhelming...
:oops::oops::oops::oops::oops::oops:
This is for my personal tracking , too much detail and graphic. So might want to stop reading now.
So I have IBS like symptoms but never too bad, also spasms to swallow where my throat closes up and hurts like a MOTHER &&&&&& but I read in the POTs forums...
Sooooooo.
I can't rate myself if I am better or worse. My disease keeps changing. And is a new challenge every time, By the time I get used to the symptoms they change and I get new challenges and have to figure how to deal.
I have a new thing where I start throwing up and cannot stop the...
Update,
I started having low BP at wake up time for a week, adjusted salt accordingly and BP got better, then on Friday I started passing out left and right. I was scared because in the # 5 or so I hit the floor pretty hard. I called the Cardio and I was asked to go to the ER. I knew I would...
As the fall approaches, I for the first time experiencing anxiety, I am not one to get anxious so took me a bit to figure it out what I was feeling.
Every year about September I have a major crash. And I do not think I can mentally or physically go through another crash. So I decided to plan...
Ok so I was doing great, I went on vacation, saw CFS Doc and increased my LDN to 4.5mg. I was doing great, One day back and I had to travel back and had to push myself beyond any limits known to man.
My father had an emergency and ended up in ICU, I don't know how I got strength and how my...
So apparently I am not suppose to pulse the imunovir anymore. Except for the every 6 months break.
She told me to use 3 pills a day all week (do not skip weekends anymore) and that is all. Stop every 6 months for one month.
Also told me They start by LDN now in protocol instead of imunovir...
So I always wonder why when I buy the expensive electrolyte Pedialyte I do so much better, I do not crash and I have better overall performance.
When I do my own I always decline. My CFS Dr told me that I need some sugar in there and I forgot the qumical lecture that came with it but I wonder...
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...