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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
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...
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...
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...
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...
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...
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...
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...
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...
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 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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...